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rohrer01
05-25-2010, 12:02 AM
Just wondering if anyone has been on long term opiates and benzodiazepine (valium, klonopin, xanax, etc.) and try to detox? I'm feeling better (hubby is getting the hang of how to get rid of my muscle spasms through massage and pressure) and want to detox. I've only been on them for two and a half months or so and am SOOOO sick. I was on oxycontin for about two or three years once and got very sick getting off of this. But after only a little over two months I didn't expect this much trouble. If anyone has any words of advice, I'm all ears. I do have a doctor's appointment on Thursday, so I'm going to ask him for help.

Lorraine 1966
05-28-2010, 09:57 PM
Glad you are going to ask your doctor for help. I have been on benzodiazepines for a long time and despise them. But nothing else seems to help, actually these don't either as I have a lot of break through pain but am determined not to go on any more tablets.

I did go off them by a quarter of a tablet every three weeks, was so proud of myself but then honestly the pain sent me nearly crazy so I had no choice. I wonder what the long term damage is going to be, and that scares me. I wish you all the luck in the world.

Lorraine.

jrnyc
05-29-2010, 01:57 AM
hey rohr
i've gone off oxy...but stayed on hydrocodone...so i didnt have any withdrawal...but i've stopped hydrocodone cold at times for up to 2 weeks (long story) and no withdrawal, just increased back pain! so i dont think my body reacts the same way as i've read on forum...and as a (retired) drug and alcohol counselor, i kinda know what to watch for...

i truly hope you can find some relief...what did your doctor say at your appt?

jess

LindaRacine
05-29-2010, 01:21 PM
We're all very different. A friend of mine had a relatively small back surgery about 6 weeks ago, and was weaned off of morphine very gradually over a 10 day period. The withdrawal was horrible for the last week. He had complete nausea (he barely ate or drank anything), and was sweating and cold. During the withdrawal period, he was still on other strong narcotics, so this wasn't a pain issue. Yet, I've known others who withdrew in a day or two, and were fine.

--Linda

rohrer01
05-30-2010, 12:01 PM
Well, I got off the klonopin by myself. I'm 9 days clean of that stuff, although it seems to work best for my muscle spasms when I have them. I tried to let my 50 mcg fentanyl patch run out. BIG mistake. I wasn't mentally prepared for what ensued. My doctor finally agreed that I needed to do something since I was down to 114# at the visit. He cut my fentanyl down to 25 mcg (then we will either stop it at 2 weeks or go down to 12.5 for 2 weeks then stop) and upped my percocet from every 8 hours to every 6 hours. I'm doing much better than I had thought, although today is day 2 and is a little worse than yesterday in some respects. I'm cold and sweaty all the time. I have some shakiness. Yesterday my nausea went away, as fentanyl causes nausea in me, but returned today but very mild. My skin hurts in the sense of being sunburned all over. Everything that touches me feels like sandpaper. I am having some pain, but I expected that. I am choosing to try to live with the pain with as little meds as possible. I expect that I will have another "pain crisis", as my doctor calls them. I have had them since I was 16 and know they will come again. I think trying to deal with them in a different manner next time will help prevent me from becoming chemically dependent on meds, though. I'm just looking forward to feeling clean. I know that I will always need a percocet rescue now and then, but that is a whole different ballgame than taking stuff everyday because you have to. Thank you for all your kind replies and concern.:)

foofer
05-30-2010, 02:46 PM
hey Rohrer....

Just wanted to deeply commend you on your efforts. I think it takes a lot of courage and honest self examination to go your route. Sounds to me like after your last visit with your scoli doc that shook you up so much, you entered a period of introspection and are so willing to try a different approach. (I feel very proud of you!)

This must be so hard....I can't even imagine.

I've also been wanting to mention that every time I read your comments in some of the research threads that I keep envisioning you eventually embarking on some kind of home study scoliosis research project. I am remembering some of your statements about wanting to work with your degree- the difficulty of being in an office or "out there" working. Anyway, since the thought keeps surfacing when I read your insights I thought I should throw it out there. Who knows, some day?!

Which ever way the wind blows for you, no matter how hard it gets- my hat is off to you....

rohrer01
05-30-2010, 09:57 PM
hey Rohrer....

Just wanted to deeply commend you on your efforts. I think it takes a lot of courage and honest self examination to go your route. Sounds to me like after your last visit with your scoli doc that shook you up so much, you entered a period of introspection and are so willing to try a different approach. (I feel very proud of you!)

This must be so hard....I can't even imagine.

I've also been wanting to mention that every time I read your comments in some of the research threads that I keep envisioning you eventually embarking on some kind of home study scoliosis research project. I am remembering some of your statements about wanting to work with your degree- the difficulty of being in an office or "out there" working. Anyway, since the thought keeps surfacing when I read your insights I thought I should throw it out there. Who knows, some day?!

Which ever way the wind blows for you, no matter how hard it gets- my hat is off to you....

Thank you! You are right about introspection. I still have pain. I will always have pain. I do have to admit that I have done this before, but then again it shows my determination to NOT be on drugs. My doctors' hands are tied because they can't DO anything more for me except give me drugs. Everything else has been tried and retried and retried... I'm not going to just curl up and let this disease take me to my grave. That's truly what these medications will do to you if one is not careful. Thanks again, you made my day!!!:)

Back-out
06-01-2010, 12:07 AM
Well, I got off the klonopin by myself. I'm 9 days clean of that stuff, although it seems to work best for my muscle spasms when I have them. I tried to let my 50 mcg fentanyl patch run out. BIG mistake. I wasn't mentally prepared for what ensued. My doctor finally agreed that I needed to do something since I was down to 114# at the visit. He cut my fentanyl down to 25 mcg (then we will either stop it at 2 weeks or go down to 12.5 for 2 weeks then stop) and upped my percocet from every 8 hours to every 6 hours. I'm doing much better than I had thought, although today is day 2 and is a little worse than yesterday in some respects. I'm cold and sweaty all the time. I have some shakiness. Yesterday my nausea went away, as fentanyl causes nausea in me, but returned today but very mild. My skin hurts in the sense of being sunburned all over. Everything that touches me feels like sandpaper. I am having some pain, but I expected that. I am choosing to try to live with the pain with as little meds as possible. I expect that I will have another "pain crisis", as my doctor calls them. I have had them since I was 16 and know they will come again. I think trying to deal with them in a different manner next time will help prevent me from becoming chemically dependent on meds, though. I'm just looking forward to feeling clean. I know that I will always need a percocet rescue now and then, but that is a whole different ballgame than taking stuff everyday because you have to. Thank you for all your kind replies and concern.:)

Incredible, rohrer! Truthfully I tried to write you a helpful reply when you started this thread and I had SO much to say, I had to stop., Judging by my other threads and posts, you can imagine what that meant.

You've probably seen some of them on the subject of my experiences with narcotics (scared you, I'll bet. Good! :() so you probably know what I mean.

I am terrified of those fentanyl patches. My neurologist (doubles in this town for my back doc since we don't have any) has been trying to push me into using them for years. I KNOW I'd get hooked. Everyone reacts differently to every med (with some commonalities) but I KNEW I would have been endangered by FENTANYL from the few times it was given to me in inducing general anesthesia or for a spinal. I became very hypomanic.

Seems to be no in between with the patches. If you're sensitive, you can't break a pill and take less like with Norco. My pharmacist told me frankly he'd "seen more people ruin their lives on Fentanyl than with any other narcotic". I appreciated his frankness. He saw me struggling.

Can't imagine how you're getting off! I will NOT let them give it to me after surgery no matter what.

Good girl!

Amanda

Back-out
06-01-2010, 12:11 AM
Almost forgot to remind you (certainly hope your doc told you this!) to titrate down very slowly on Klonopin, as it can cause seizures. Sneaky med, that one, and surprisingly hard to get ALL THE WAY off of.

What was your dose and what is it now?

jrnyc
06-01-2010, 12:24 AM
fentanyl patches never helped me...too little relief, and i always had "break thru" pain...or too much by increasing frequency, and i couldnt function that way...i hated them!
then the stuff came out about overdoses, deaths, etc, from patches, and they went off market...at least for a while..
i never bothered with them again...i generally dont like using patches as a medication delivery system anyway....:(
i stay on hydrocodone mostly...oxycontin had me down to 87 pounds, it destroyed my appetite so bad! i throw up oral morphine before it could have any effect at all! the hydrocodone allows me to at least stay in the 90's for my weight....

jess

Writer
06-01-2010, 01:43 AM
Rorhrer,

It makes my heart hurt to read about you and so many others suffering constantly and taking all kinds of pain medications.

If you are in Madison, you are about 100 miles from two different, very experienced scoliosis clinics which can almost certainly give you much of the relief you need -- naturally -- in a couple of sessions. Very often the therapist will suggest quite simple things you can do, like shifting your pelvis back towards midline, its natural position where it probably is not situated now, and teaching you how to sit (and it's different in a car), lie in bed, and how to carry yourself when you walk. We are all posturally out of whack in many ways that we do not realize till a perceptive PT points them out.

www.scoliosisrehab.com and http://www.sdwpt.com/

You can read lots of patient and parent impressions of Scoliosis Rehab and Spinal Dynamics on this board. Good luck!

Below is a full-text article reporting that programs like the ones above can reduce pain in scoliotic adults by an average of 2/3. In a lot of the patients, pain disappeared altogether. This is the main Schroth in-patient clinic in Germany reporting, but I know from my experience and that of others I've talked to that you don't have to go through the whole program to get pain relief.

http://www.mediafire.com/?1mkdz1hkm5j#1

rohrer01
06-01-2010, 07:45 AM
Well, I'm on day four of my step-down to 25mcg of fentanyl. Thankfully I've had the percocet to help me withdraw. I woke up today actually feeling normal again, no withdrawal weird feeling, no cold sweats, no shakiness. Awesome! I took my percocet according to my own step-down schedule. I don't need to add withdrawing from that to the mess I'm already in, although I usually don't get bad symptoms from stopping. I go down on the percocet every 2 days. Tomorrow I will be on an "as needed" basis only, but only up to 2 per day.

Yes, the problem with fentanyl is that it comes in a patch and you can't "lower" the dose yourself. Breakthrough pain is a given because the body adjusts to the drug being present and you eventually need the drug just to feel normal, which unfortunately takes you back to ground zero as if you weren't even taking it. I'm not afraid to take it post-surgical, though. It doesn't seem to have it's addictive properties that way. It's probably because they give it in one whopping dose to get the pain under control and then keep the pain under control with different medication. That's what they've always done for me anyway. Morphine doesn't help me after surgery or with the severe pain that I get.

Thanks so much for the links! The third link didn't work for me though. I've been reading about the Scroth method on the other threads. I know I'm a skeptic when it comes to some of their claims. HOWEVER, I KNOW from experience that excercise does reduce pain. So, with that said, if I look into it, that will be my only expectation, since the surgeon won't touch me. My only options are excercise and drugs. Chiropractic apparently messed me up pretty good. I always believed that it was quackery, but my daughter talked me into trying it one more time for pain. I found a really nice chiropractor who was willing to listen to me. It seemed as though things were going along okay, but when the verdict came in, I had progressed. She was mortified, as am I.

I feel so much better today that I am tempted to just take the patch off tonight and start the step-down sooner. I eventually have to do it anyway. My doctor wants me to do it 2 weeks at a time and I want to do it faster. They told me at the ER last week that it won't kill me, so that's why they wouldn't inpatient me to help me. I have plenty of percocet on hand. I am just in a position where I don't know what to do. I really want off of this stuff NOW. It's so hard to wait until next week when the urge to quit is soooo strong. Any thoughts?

Thanks again. You all are so thoughtful and HELPful!:)

rohrer01
06-01-2010, 07:55 AM
Almost forgot to remind you (certainly hope your doc told you this!) to titrate down very slowly on Klonopin, as it can cause seizures. Sneaky med, that one, and surprisingly hard to get ALL THE WAY off of.

What was your dose and what is it now?

I know they use Klonopin to treat seizures, but NO ONE ever told me they would cause seizures if I quit abruptly. I have always titrated down on this drug. You can't do it any other way. I titrated down too fast this last time, though. I also found out that it is the MOST addictive of the benzodiazepines. It figures, the one that would work the best for me would have to be the most addictive.:rolleyes: I'm 11 days out from that one and not having symptoms anymore. I just HATE being controlled by a drug. If I take something I want it to be because I truly NEED it, not because the drug makes you sick if you don't take it. WOW, what a rollercoaster my life has become! I sure wish these meds weren't addicting or have such terrible side effects!

rohrer01
06-01-2010, 08:09 AM
fentanyl patches never helped me...too little relief, and i always had "break thru" pain...or too much by increasing frequency, and i couldnt function that way...i hated them!
then the stuff came out about overdoses, deaths, etc, from patches, and they went off market...at least for a while..
i never bothered with them again...i generally dont like using patches as a medication delivery system anyway....:(
i stay on hydrocodone mostly...oxycontin had me down to 87 pounds, it destroyed my appetite so bad! i throw up oral morphine before it could have any effect at all! the hydrocodone allows me to at least stay in the 90's for my weight....

jess

Wow, you must be a really small person. I'm a bigger girl and am 5' 7" WITH my scoliosis, so they told me that I would have been between 5' 9" to 5' 10" if I didn't have scoliosis. I can't take hydrocodone anymore. I took so much of it about 10 years ago (it was my main rescue drug) that I developed an allergy to it. It really stinks, too. They can "call in" a prescription for hydrocodone and give you refills. Oxycodone is more highly controlled and I have to go in to get a written Rx. That makes it really difficult if I run out and end up in crisis on a weekend or at night when I can't go in and see my doctor. That's why I end up in the ER. I've had him call in tylenol #4, but that makes me loopy without the pain killing effect. Being loopy and still in pain seemed to only add insult to injury. When my pain gets really bad, NO oral medications seem to do anything. They are literally like I didn't even take anything, it's so very frustrating! I really want to be completely drug free. My pain specialist told me that was a noble goal, but unlikely due to the amount of pathology I have. Well, if I have so much pathology, why won't the spine doc fix it? Arghhhhh!!!!! But now, after getting off the meds, I'm afraid to have ANY surgery again because I know meds are involved.:(

Thanks for listening to me vent.:o

Back-out
06-01-2010, 07:05 PM
I know they use Klonopin to treat seizures, but NO ONE ever told me they would cause seizures if I quit abruptly. I have always titrated down on this drug. You can't do it any other way. I titrated down too fast this last time, though. I also found out that it is the MOST addictive of the benzodiazepines. It figures, the one that would work the best for me would have to be the most addictive.:rolleyes: I'm 11 days out from that one and not having symptoms anymore. I just HATE being controlled by a drug. If I take something I want it to be because I truly NEED it, not because the drug makes you sick if you don't take it. WOW, what a rollercoaster my life has become! I sure wish these meds weren't addicting or have such terrible side effects!

Oh, yes indeed they can cause seizures. And doesn't this fit from the whole notion of rebound effects?

This is more usual when people drop levels abruptly, especially from a high dose, but if we don't know our seizure thresh-hold, we might find out the hard way, it's more delicately poised than we knew.

As I mentioned elsewhere, I know of someone who died because of resulting brain damage. It was a few years out from her playing with her dose (she "was tired of being on so many meds!") butt she went into status epilepticus (uncontrollable seizure). In some unknown fashion, this eventually led to her death. :(

It's VERY hard to wean all the way off. I've been taking it for twenty years, only one mg a day now before bed, and rarely when I feel very jazzed up. I feel sure it's making my thinking cloudier, ,though, by hang over. (And not sure it's helping me sleep!). Such a long onset time!

BTW one thing universally recommended in helping detox from narcotics, was (temporarily) anyhow to resort to as many benzos as needed. Doing both simultaneously probably made it much harder for you.

FWIW there are online detox support sites for narcotics users/abusers. By the time I got in full swing I was too out of it to post there but reading other people's struggles was immensely helpful (and helped me prepare. Like having anti--diarrheals on hand! :cool:) They were almost universally people who'd begin with them, because of chronic pain and that's what I've heard from rehab professionals too.

While you're engaged in your challenging job, you might get even more support on such sites than here. I felt so sorry for them! And angry with doctors who hadn't properly educated them when first prescribing.

One day I had the AHA! of realizing there must be many more people like me. The inevitability of tolerance combined with the fact of intractable pain, made it all too clear. So I looked online, Googling combinations of “chronic pain” “tolerance” “detox” and found many, many, many sites. Some go by specific med names. Their drug of choice. (hydrocodone seems to be very popular, maybe because it’s the easiest to take and continue to function re sleepiness) Note I do not think I read of anyone taking as much as me, but I worried a lot about those anywhere near, because i was the only one who was taking it pure (without Tylenol(.

Did you ever wonder why there is NO pure form marketed? Heh, that certainly is Darwinian, isn't it? They're willing to market it as a class three narcotic as long as they're killing abusers! Many worried tremendously about their livers.

jrnyc
06-01-2010, 07:19 PM
hey rohr
so sorry to hear of all the grief you've been through with meds and all! vent any time..
the allergy..what a rotten situation...but i agree about the goal of being off all meds...and i'd rather be on meds than be in pain! i watched plenty of addicts while a counselor...in and outpatient...and i know very well what it involves...but i am not addicted to this stuff...as i said, it doesnt even kill the pain...just takes the edge off...i hate morphine and dont like oxycontin...so there isnt anything stronger i'm interested in...

does your pain doctor have any ideas of anything that could help you? have there been no injections that worked well enough? i cant remember if you said anything about injections or not...i am getting another one june 10th when i see my pain doctor in NYC...he wants to address the sciatica pain that has worsened lately...i dont expect much, so wont be disappointed, as none of the injections for lumbar have helped much...

jess

rohrer01
06-01-2010, 10:57 PM
does your pain doctor have any ideas of anything that could help you? have there been no injections that worked well enough? i cant remember if you said anything about injections or not...i am getting another one june 10th when i see my pain doctor in NYC...he wants to address the sciatica pain that has worsened lately...i dont expect much, so wont be disappointed, as none of the injections for lumbar have helped much...

jess

Hi, again. My pain doc wanted to put in an intrathecal morphine pump. My pain is mostly isolated to my neck and upper spine now, although not that bad that I can't tolerate it. I had an epidural steroid injection for my L5/S1 disc that has degenerative disc disease and bulging. It has all but eliminated my lower back pain. The thing is, about the intrathecal thing, is it is still drugs. It still gets into your system. It would be nice if it all stayed in the spine, but it doesn't. Besides, according to the hospital's protocol I don't even qualify. The spine has to be stable, which mine is not. Surgery on the spine can not be an option, well surgery is always an option when the time comes. Therefore I don't even know why he was trying to push this treatment on me. He seemed soooo determined that this was what was best for me, and I'm not at that level, ...yet. :eek:

So I decided to try going off the patch tonight. Wish me well. What made my mind up was that I was sitting in the bathtub and had taken my patch off and layed it face up on the edge of the tub. Along comes this spider out of nowhere dropping down right toward my patch. As soon as his little legs touched it, the little spider instantly recoiled as if it were on fire! I guess if the arachnid world can see that it is poison, I shouldn't put another one on.;) It might be silly, but that's my story and I'm stickin' to it! If I wuss out, I will let you all know.:o

Take care

P.S. If you don't hear from me for a couple of days, it's because I'm feeling too crummy to get on the computer.:o:o

Back-out
06-01-2010, 11:13 PM
Along comes this spider out of nowhere dropping down right toward my patch. As soon as his little legs touched it, the little spider instantly recoiled as if it were on fire! I guess if the arachnid world can see that it is poison, I shouldn't put another one on.;) It might be silly, but that's my story and I'm stickin' to it! If I wuss out, I will let you all know.:o

Little Miss Muffit. Great story!! (Didn't realize the patches come on and off!)
One of the sustaining things about detox is that when you formalize it, you start to get such a great feeling of achievement, it goes a long way to act against the crummies (which are SO MANY)

Day by day, there's a countdown and each one is a great achievement - just surviving! Right? Milk t for all it's worth. Every minute you are NOT taking that crap, you are doing something great for yourself (and one that takes tremendous fortitude)

Don't let yourself forget it.

P.S. If you don't hear from me for a couple of days, it's because I'm feeling too crummy to get on the computer.

I sounderstand!

Hoping it might help (and thinking it might have gotten lost in a sprawling post) I'm going to quote from myself - the part of the post, I think may help.

Me, repeat:

FWIW there are online detox support sites for narcotics users/abusers. By the time I got in full swing I was too out of it to post there but reading other people's struggles was immensely helpful (and helped me prepare. Like having anti--diarrheals on hand! ) They were almost universally people who'd begin with them, because of chronic pain and that's what I've heard from rehab professionals too.

While you're engaged in your challenging job, you might get even more support on such sites than here. I felt so sorry for them! And angry with doctors who hadn't properly educated them when first prescribing.

One day I had the AHA! of realizing there must be many more people like me. The inevitability of tolerance combined with the fact of intractable pain, made it all too clear. So I looked online, Googling combinations of “chronic pain” “tolerance” “detox” and found many, many, many sites. Some go by specific med names.

Might be worth a shot...

Going off the patch is hair-raising hard. I thought you were going to titrate down from 25 to 12.5 mg first. Maybe that's what you meant.

jrnyc
06-01-2010, 11:42 PM
hey rohr
oh, right...now i remember that catheter pump implant thing...kinda didnt like the idea of that....but if an individual epidural cortisone type injection has helped you, can you stick to occasional injections by the pain doctor, whether epidural or nerve ablation or facet block, or whatever...if it helps?

hope another injection will be tried for you to help relieve some of the pain...
and as i said, i kinda dont like patches for delivery systems, so it was great when i quit fentanyl!!

jess

foofer
06-02-2010, 10:17 AM
So I decided to try going off the patch tonight. Wish me well. What made my mind up was that I was sitting in the bathtub and had taken my patch off and layed it face up on the edge of the tub. Along comes this spider out of nowhere dropping down right toward my patch. As soon as his little legs touched it, the little spider instantly recoiled as if it were on fire! I guess if the arachnid world can see that it is poison, I shouldn't put another one on.;) It might be silly, but that's my story and I'm stickin' to it! If I wuss out, I will let you all know.:o

Take care

P.S. If you don't hear from me for a couple of days, it's because I'm feeling too crummy to get on the computer.:o:o

Again, Rohrer,
Thumbs up, hats off to you!

That is a great story...if one was ever looking for a "sign". woo

rohrer01
06-02-2010, 10:34 AM
Just letting everyone know that I've gone ahead with my plan. I am now fentanyl free for 14 hours. That might sound silly, but the drug leaves your system VERY quickly once the patch is removed. I was in full blown withdrawal last night by 11:00pm. Thank goodness that I have percocet to carry me through this, although I would do it even if I didn't, but it makes it much easier. I get chest pain and difficulty breathing when detox first starts. That is freaky because I have a heart arrythmia, which alway acts up, too. I am past that. I have to admit that I "accidentally" fell asleep which was a good thing, but woke up starting to have a panic attack because of how wretched I felt. Then I started to think to myself, this is just the poison leaving my body, give it time, this is the "real" effect of the poison, let it out. Once I started thinking thoughts like that I settled right down and let it happen. The chills and sweats are terrible. I was able to hold off the percocet until 1:30am, and have been taking it every 4 hours. As I feel better I will lower the dose until I'm not on it any more either. That will be my last drug to go. I have conquered 3 out of 4 now. I do feel really great about that. :D

Drugs gone:
klonopin
fentanyl
soma

To go:
percocet - although I will retain this as my "rescue".

Thanks for all the support!

P.S. I have looked on other boards for fentanyl detox. Quite frankly it scared the crap out of me! I haven't experience anything as horrible as some of those people out there. My doctor was kind enough to give me as many step-downs as I want. I chose not to drag it out and go the 12.5mcg route. I figured if I took a drop of 25mcg once, I could do it again.

rohrer01
06-02-2010, 10:40 AM
Little Miss Muffit. Great story!! (Didn't realize the patches come on and off!)


The patch doesn't go on and off. Once you take one off, you have to put a new one back on. They are designed to lose their stickiness.

rohrer01
06-02-2010, 10:41 AM
hey rohr
oh, right...now i remember that catheter pump implant thing...kinda didnt like the idea of that....but if an individual epidural cortisone type injection has helped you, can you stick to occasional injections by the pain doctor, whether epidural or nerve ablation or facet block, or whatever...if it helps?

hope another injection will be tried for you to help relieve some of the pain...
and as i said, i kinda dont like patches for delivery systems, so it was great when i quit fentanyl!!

jess

I will find out on the 15th what they intend to do about my neck and upper back pain. It's primarily in my neck. I think getting occasional injections are better than a pump, as long as they keep working.

jrnyc
06-02-2010, 12:52 PM
i think that is a better and safer idea, rohr..

so sorry to hear of the tough time you've had with going off stuff...it makes me so grateful that, for whatever reason, my body goes off meds... cold... without notice...and i was ignorant of what could happen, so just merrily went along, blissfully unaware of the bad things that could have occurred!

i hope the docs hit on a good injection for you that will bring you at least some relief!

jess

Karen Ocker
06-03-2010, 06:06 PM
it is dangerous to detox self. After surgery I tried to cut back on the fentanyl patch too soon--deadly depression followed. My pain doc prescribed Paxil-helpful for pain and depression, continued using Neurontin for 3 months, Tylenol Arthritis up to 4gm/day, lido patch and Tens machine. I was opiate free 3 months after surgery with a reasonable comfort level. After 4 months started aleve while continuing the Tylenol. Pain must be treated and opiates are not always the answer.

Went back to Pilates-private instructor after 6 months with great help.

jrnyc
06-03-2010, 07:26 PM
hey Karen
if there is no addiction, it is not detoxing...i worked for over 10 years in alcohol and drug addiction field...both detox and rehab...i know the signs and symptoms...and i know denial is not a river in Egypt! :rolleyes:
i take meds as needed...most days i need them, but some days, for example, after injections, i may not...and am so grateful...the worst days are the cold and damp ones...but at a certain point, i stop taking the meds...and get in the shower! at a certain point of pain, hydrocodone doesnt do it...i have morphine and oxycontin, but dont like either...one makes me sick to my stomach, the other exhausts me! so there are days where i am in the shower, in bed, back in the shower, in bed, then on a heating pad!
i have never gone beyond 8 pills a day, most days not beyond 6 pills...my happiest days are the ones when i need nothing! and i hated the fentanyl...happy to stop that...wasnt on patches for long...didnt like dealing with all the "break thru pain"!!
just a note...Paxil can be VERY tough to get off...for anyone on it for any length of time...i dont call it detoxing..it is an antidepressant..but reports of tough times with it are rampant...

jess

Back-out
06-03-2010, 11:34 PM
jrnyc

Paxil can be VERY tough to get off...for anyone on it for any length of time...i dont call it detoxing..it is an antidepressant..but reports of tough times with it are rampant...

Just goes to show how different every one is with drug metabolism.

I was on Paxil for two years. Didn't help at all,, but the inertia was so great I didn't get off. Finally call from old boyfriend goosed me into action, as I suddenly had to acknowledge I'd put on 30+ lbs since I'd seen him.

I went off it in a single day and had absolutely no side effects!

The weight took a while to unload though - it was 50 lbs in all from the very start. Ouf! What a drag. Hated the med. "Through a glass darkly" and then some...(But I was imperturbable! :D)

Not sure what you mean by addiction, Jess. I don't consider I was addicted to hydrocodone, per se. Even at the highest dose I was on, I didn't take it to get high (if I had, I'd have chosen a different medicine!) FWIW I use the term "detox" loosely. Does it have to be related to an addiction? I see it as meaning getting rid of the toxic effects on the body (though the changes in brain chemistry may never be fully undone :()

The tolerance was inexorable, built in. I continued because stopping would have felt so awful. I was upping the dose long after I'd hit a ceiling on therapeutic effects, but I didn't realize that until later.

Self detox may be dangerous, Karen, but some of us have no choice. It's very expensive and not all insurance covers it. :(

Hang in there, rohrer!! Sometimes it gets harder when the exhilaration of the first clean days, wears off. Of course, you still have Percocet to get through. That one can be a toughie. It was my first detox and oh yes, I WAS depressed. Luckily, I had expected it, and kept repeating my mantras:

"It's just chemical" and "It's just temporary". :)

jrnyc
06-04-2010, 06:24 AM
i have been in the field of addiction since 1997...i know what "addiction" means...people throw the terms "addiction" and "detox" around too loosely, in my opinion...
i have not upped my dose of hydrocodone in 3 years, since i know that at a certain point, it is useless, and doesnt help at all, at least, not for me..
while some may build a tolerance to the pain meds, it doesnt equal "addiction"...
and "dependence" and "addiction" are also not identical....

jess

rohrer01
06-04-2010, 10:14 AM
I wouldn't say that I'm addicted. I am chemically dependent to feel normal. I have built a tolerance to the medication. I am therefor detoxing from my chemical dependency. I'm not doing it alone. I am under a physicians care. I just upped the game a little, as I am impatient and want this stuff OUT of my system. I figured I took a 25mcg drop in fentanyl once, then felt "normal" after the third day (day four), so I did it again. I must say that today is day 3 and I'm about pulling my hair out. I just want to crawl out of my skin. I have this nervy sensation, like a whacked funny bone, in all of my nerve fibers. It's horrible.:( I think that my doc half expected me to do this. He knows me well enough. He made sure to give me more percocet than I needed to do it in two weeks.

Take Care,
Rohrer01

mbeckoff
06-04-2010, 10:18 AM
You are in my thoughts and my prayers

Hope you can do it

Melissa

jrnyc
06-04-2010, 01:28 PM
sorry you are suffering, rohr! that sure sounds like it is on the continuum of detoxing...i hope the days pass quickly for you! hope you can sleep for some of it!

jess

rohrer01
06-04-2010, 03:50 PM
I'm coming dangerously close to taking klonopin. I can't stand this. My mom says to "just take the klonopin and quit suffering". It's been two whole weeks since I have taken one :D so I'm wondering if I go back on an 'as needed' basis like I was before, where no dependency occurred, if it has been long enough. I don't want withdrawals from that stupid drug again. :confused:

rohrer01
06-04-2010, 03:50 PM
BTW I'm sure it's fine with my doc.

rohrer01
06-04-2010, 03:52 PM
The days are creeping along, second by second, minute by minute, it's aweful!!:(

jrnyc
06-04-2010, 06:46 PM
so sorry, rohr, that it is so tough! can you sleep at all...? i think that's the best if it is possible for you...
are you sure you are cutting back slowly enough?
have you talked to the doctor about how tough this is going for you?
i've been with all kinds of folks who have detoxed and gone into rehab...from heroin to pain meds to...all kinds of substances! it is hell...some situations worse than others!
it seems so cruel when one has been on meds for doctor ordered care that is for the kind of back pain we have on forum...but it is hell for anyone, any reason!

i hate to see anyone in pain...i would just suggest talking to the doctor again, if you havent already...

jess

Confusedmom
06-04-2010, 11:48 PM
Isn't there any other kind of pain med? Klonopin is so awful to get off of, and I had problems with Percocet, too. Bed sweats, hot/cold, panic attacks, etc.

Actually, antidepressants eased my back pain (Celexa and Lexapro at different times), but mine was not severe. These take a while to back down from, too, but for me it was more a mental than physical thing.

I take it Nsaids do nothing for you? What about exercise--is that an option? P/T did help me a lot.

Commiserating--and wondering what I'm going to be taking post-surgery!

Evelyn

Back-out
06-05-2010, 12:26 AM
I'm coming dangerously close to taking klonopin. I can't stand this. My mom says to "just take the klonopin and quit suffering". It's been two whole weeks since I have taken one :D so I'm wondering if I go back on an 'as needed' basis like I was before, where no dependency occurred, if it has been long enough. I don't want withdrawals from that stupid drug again. :confused:
I know, I know...Poor old thing (need huggie emoticon)
Thing is, chances are IMO that you're still sensitive to Klonopin, It REALLY stays in the system, and they all change brain chemistry in different ways (though it can revert AFAIK given enough time without exposure).

My efforts to get off Klonopin echoed by others I know, is that it leads to something called "akathisia" - a hideous creepy crawly feeling.

As I wrote earlier the advice I got from on-line forums is that when detoxing from opiates, one big help is benzodiazapines. My neurologist (who initiated my withdrawal) said the same.

You titrated down so great from the other stuff (I probably went way too fast) and you succeeded partly on that account. Maybe this is more of the same good sense and discipline.

If you read online about Klonopin withdrawal you'll see how slow it's supposed to be done. Most withdraw from Klonopin going down in tiny increments (max 25 mg or half that), often staying on that dose for a week or more at a time before titrating further down - depending on how long they had been on and their response. It's such a deceptively powerful med that a tiny dosage can make a big difference. It even comes in pills of only .125 mg.

Nb. now see I was NUTS in how I once approached it. What's more, I now realize my remaining dose is what's causing my tinnitus - ringing in the ear! :(. I'm resolving to discontinue it - very, very slowly (I've been taking it for 21 years!).

On the chance that you're suffering from akathisia (sounds awfully like to me), perhaps it would safe-guard your other progress if you added a tiny bit back in. If you do, don't forget how long it takes to kick in! FYI it also comes in a fast acting tongue dissolving wafer (pricy) in these tiny doses.

If not Klonopin, then maybe 5 mg Valium would help you wean from the patch and then Percocet. As you read online, Oxycontin and Fentanyl are NO joke. Withdrawing from TWO drug classes at the same time seems to me like really pushing it. Endangers your success unnecessarily - and, I believe, also your health.

You're doing GREAT, but if you can't sleep and so on, it will make things so much harder for you...Maybe I'm over-identifying - I know what I needed and what is usual. Are you sure your doc knows you're trying to eliminate both classes at once? And is this is the same doc who didn't tell you there was a risk of seizures from coming off Klonopin? Nb it's true of all benzos, but especially K.

It's a very powerful drug.

Be well!:)

jrnyc
06-05-2010, 12:36 AM
hey rohr
did you call the doctor Friday? will he take a call from patient over wkend? i just think you should discuss all this with him before doing/changing anything...just to discuss possible outcomes, and alternatives...
i am praying that you have improvement over the wkend!

jess

Back-out
06-05-2010, 02:09 AM
Per subject line...:eek: :eek: :eek:

It is occurring to me how extremely important it is to get off Klonopin before I have any spinal surgery!!! To think how people worry about sneezing...It scarcely bears contemplation, and yet we must!

Any pre-fusion folks on benzos take heed.

Also re points on the need for very slow withdrawal from benzos should one so decide...
Klonopin seems the worst offender, but it also occurs with Valium and Xanax.
And after all, all are anti-convulsants, however mild.

rohrer01
06-06-2010, 07:21 PM
I went to my mom's for the weekend. I made it without giving in. I took the klonopin bottle with me "just in case" and just having it there gave me courage NOT to take it. I think I do have that horrible crawly feeling. But today, for the first day I feel better, although it hit me again this evening. I have been breaking the percocet in half and am down to 3 per day. As I get better each day I stretch the percocet out longer and longer. It is working. Thanks for all the support! ((((HUGS)))) to all of you!!!
:D

jrnyc
06-06-2010, 08:41 PM
good for you, rohr!
:)

jess

Back-out
06-07-2010, 12:12 PM
What a relief! I've been thinking of you often. You did the right thing - including going to your mom's with bottle. How great she is able to be a mom to YOU - nothing more needed with something like this. To withdraw with YOUR dependents around you would be terrible for you and them. It couldn't be done without damage.

Good too that you had the K. bottle with you. Yes, it can give you strength. That way you can be aware that you are making a conscious choice every moment. Makes it seem more manageable; meanwhile, knowing relief is avaible, wards off panic.

This is especially important with the very real seizure issue always hovering. I think such worries themselves can lower the seizure thesh-hold.

Reminds me of a good reason to get off Klonopin (until - unless you get to the point where these meds are useful on an occasional basis. Not to merely "Feel normal", as you said early on).

I had a family reunion completely ruined by forgetting my Klonopin. It was pretty much the only prescription med I was taking then except for thyroid - haha - and yet SO important, for sleep and to avoid withdawal and seizures). It's NOT easy to scrape up an MD to prescribe it to you out of town on the spur of the moment. Ended up having to call an old HS classmate I thought had married a NYC shrink . Humiliating, and much of the long weekend went to tracking it down, inconveniecing everyone. Younger son a lively toddler at the time, had to be "sat". etc.

Klonopin is a medicine that must NEVER be forgotten on an out of town trip. Too many of them are, for that matter. That's one thing I most hate about them. I keep thinking - what if? (...What if, there were an external emergency which made meds unavailable, etc. ) Seems silly, as all prescription meds are in the vital category in some way but there it is.

Even thyroid! Without it, I'd become an imbecile - used to describe such patients. I need a high dose. When it was discovered, it rescued many otherwise normal people from asylums where they'd been languishing, thought to be hopeless mental defectives! Better to depend on nothing, if possible.

Back-out
06-07-2010, 02:27 PM
* Note to whom it may concern. NYState law has since changed so that one can get an out of town doc to prescribe even the most controlled substances for up to five (approx) days by calling/Faxing - to be followed up with written script.

That allows dependent out of of town visitors from going through what I went through then, with a class IV (?) narcotic. This law is even good for up to class II! (oxycontin, etc.) and might be true in other areas, too. This can be life-saving info tho best, of course, is never forget your meds!

rohrer01
06-07-2010, 08:57 PM
I went to the doctor today at Physical Medicine and Rehabilitation. He works closely with my pain doc. He recommended facet joint injections in my neck when I have my next flare-up. He can also do trigger point injections to help with the pain so I don't have to be put on so many narcotics. :D He also said I was doing really well with my withdrawal, even though I was sweating profusely, and told me to keep going with weaning down. I told him that I stepped down a little faster than I was supposed to and he asked me if I had needed klonodine (sp?) for it. I said no, so that was a good thing. He said they really try to avoid that if possible. So I'm doing really well. I still have pain and I always will. I'm just trying to find better ways to manage it than narcotics. He recommended swimming therapy, which I totally agree with as I have somewhat successfully done it before, but not until I'm feeling better from the withdrawals. I just wanted to say 'Thank You' to all of you again who have been supporting me through this difficult time.

jrnyc
06-07-2010, 09:07 PM
hey rohr
so glad for you that they discussed pain injections...i get them often...some work, some dont, in my case anyway...and in many other patients i've seen who have same thing...to me, in my opinion,it is important not to give up if the first one doesnt work...sometimes the 2nd or 3rd is the charm

am happy for you that you have stuck it out...hope you are proud of you! :)

jess

foofer
06-07-2010, 11:08 PM
Hello Rohrer,

Have been on a marathon work regime, so I haven't had a chance to sit down and let you know how great it was to hear that you made it through this weekend with your plan intact...

Like Jess said, YOU should be proud of you. I know I am, and we've never met. I don't know much about this process (I am learning vicariously), but it seems like you picked a huge challenge, unaided, and you may be spilling out on the good side. I sure hope so.

Keep it up, girl. You are in my prayers and on my mind.

Amy

rohrer01
06-08-2010, 07:04 AM
Thanks. I'm down to only percocet 3 times a day. I must admit that I am having a much harder time with the percocet than I EVER have had in the past. My response to this med in the past was pretty benign. I just figure that I came off of two BIG monsters, so a little percocet for now is no big deal. I'm not trying to play the hero on that one, yet. ;) I feel pretty crappy this morning, so I took a whole one instead of breaking them in half like I have been. It is raining here, and I always feel worse when it rains. I WISH I could take NSAIDS. That would help with pain issues as tylenol alone makes me feel sick. My doctor doesn't want me to take ANY NSAID because he is afraid I will go into kidney failure because of taking so much throughout my life. He said something about new studies showing that they have a cumulative affect on the body over time and that some people are going into kidney failure even on "safe" doses. I really don't need to add that to my list of woes right now. Oh, I meant to say yesterday that I asked the doctor if he does botox injections and indeed he does! On the bad side, he said he was afraid to give me any because my spine is not stable. He's afraid that if he paralyzes any muscles around my spine that it will collapse faster.:( He also said that residual depression can last for a couple of months after being clean from narcotics. He told me that lack of energy and motivation are very common. This I can relate to VERY much. I'm glad to hear that my depression is "chemically" induced and will go away. I can not take anti-depressants because I have a heart arrythmia. My cardiologist said absolutely NO antidepressants under any circumstances as they induce tachycardia in people like me. I have been on them before for pain management and I always had problems with my heart while on them. I'm of the mind that when I know what is causing something, it makes it a little easier to endure. I'm by no means suicidal or anything, just not motivated. My house is a disaster (at least by my standards). Men just don't seem to appreciate things like clean floors and bathrooms, and I don't feel up to doing it as often as I should. I'm on day 8 of no fentanyl. I know I will feel better soon. I can't wait until I'm totally clean and through the withdrawal period. I'm actually looking forward to getting the injections for pain rather than taking pills. Yeah! You all are so GREAT and ENCOURAGING!!! :D

jrnyc
06-08-2010, 11:39 AM
hey rohr
yes, the stuff about residual depression...unfortunate that you cant take antidepressants...i've watched them help all kinds of addicts in rehab!

NSAID's never did anything for me...though i know they have helped lots of folks...but they also can really damage the stomach over time, so they have good and bad to them! i dont regret not taking them! i had enuf stomach damage from long term antibiotics for Lyme!

you know, in 12 step they always talk about patience...and small steps, etc...i know it is really hard, especially when the hours seem to crawl! i am hoping and praying that things get a little easier for you...it really is one minute at a time sometimes, and i know that can be agony! keep your eye on the goal...you will get there...

i dont know why your doctor said that about botox shots...my surgeon is fine with it...would just as soon not have to go above T11 for my...eventual...surgery...so all the surgeons i consulted with...over 5...were fine with my getting botox in thoracic region...NONE spoke of spine collapsing...i dont understand what that is about...?

hope you feel better soon...
jess

rohrer01
06-08-2010, 12:09 PM
Maybe because your main problems are in the lumbar region? Mine are in the upper thoracic and unstable. He was really, really intimidated by my condition. They all seem to be at that hospital.:rolleyes:

jrnyc
06-08-2010, 12:17 PM
no..my botox shots are only for thoracic...for muscle spasms that were so painful! but yes, my biggest problems come from lumbar, and also that is where my discs are all degenerated...and the stenosis is...etc etc...

in NYC, doctors seem to accept botox as a valid treatment for muscle spasms...i found out about it from someone who got the shots in her hips...though botox hasnt worked for me in lumbar region...just upper back...i dont think the surgeons would have OK'd it if they had doubts about my spine collapsing...they are happy i found this tx...and that it helps!

jess

Back-out
06-08-2010, 02:02 PM
Mahor congratulations to you, rohrer! Hip Hip Hooray!!!!!

I'm glad you were warned about depression. It really helps to know it's there and that it's "exogenous" (from outside your natural system). Depression was always THE great problem for me in the past, except for that hellacious period of near complete insomina when I went off my high dose of opiates last June.

But yes, depression is a big deal. As I said, my mantra became:
"it's all chemical and "it's temporary". That helps. AFter all, since they are euphoragenic, there is the rebound effect from that as from every other effect they have.

I'm reading up on the NSAIDS news thanks to your notice. Disturbing to me considering how MUCH I've taken in the past - Relafen and Vioxx especially. The latter was fabulous for my pain - far better than opiates. And I'm trying to lower my already low opiates dose now by increasing ALeve (which also helps a lot), so this is BAD news. Don't know how I'll cope with post surgery pain without it. Is there nothing left? :(

Hypnosis,,,

rohrer01
06-08-2010, 03:57 PM
As far as the NSAIDS go, I think I have taken far less than my doc thinks. I'm hurting pretty badly today because it's cloudy and rainy and cold. I don't want to up my percocet any and disturb things as far as the withdrawal goes. My only options are to take more percocet, take an NSAID or be in PAIN... I think I'm going to take some naproxen if it gets any worse. It seems to be the least irritating for my stomach and hasn't put me into tachycardia like ibuprofen and fenoprofen have. I'm sure one dose won't hurt me. It's so very, very frusterating because I feel like my hands are tied. I have had the beginnings of an ulcer before, so my tummy is VERY sensitive to NSAIDS and I can't take too many for the reason of stomach pain. Arghhhhhhh!! I really don't know why my doc freaked out about kidney failure. He hasn't even run a kidney function test. I haven't had any symptoms of kidney failure either, so this just came out of the blue for me.

Back-out
06-08-2010, 04:05 PM
I just read that Naproxen is among those LEAST apt to cause cardiac symptoms though its GI risks are much higher. So!

rohrer01
06-08-2010, 04:12 PM
Thanks! That's strange though, because ibuprofen seems to be the worst offender to my stomach...:confused:

Back-out
06-08-2010, 04:32 PM
Everybody's different Personally, I've at least stopped swallowing it bedside PRN or even with small sips of water. Belatedly reading directions, I think even at the risk of an extra pit stop I'll take it with that full glass of water they specify! Er, don't want to think of how long I've done it wrong. Man, it DOES taste acidic to the tongue, though - outright burns!

jrnyc
06-08-2010, 06:15 PM
hey rohr
am concerned about that "ulcer" comment...i have had major GI problems, most began from long term oral antibiotics, some reactivated old problem...but please be very careful....cause i have found, in my own experience, that once those stomach problems take hold, they are very difficult to get rid of!!

also, i once took an all day "pee in a bottle" (with a chemical inside bottle) test for kidney function from a specialist...did they give you one of those tests...?

feel better...i know how bad chilly damp days are!

jess

rohrer01
06-08-2010, 06:21 PM
Don't worry about me. I got my painful stomach again and decided against the naproxen. Soooo here I sit, hurting and grouchy. :mad: I can't take anything for a couple of more hours at least. :( YES, the stomach problems just don't seem to go away once they start. I, personally, am more worried about that than kidney problems. It's hard to stop a GI bleed.

jrnyc
06-08-2010, 06:32 PM
so sorry, rohr...do you think you need an endoscopy or some other test...or just some rest for now?

feel better soon...
jess

rohrer01
06-08-2010, 06:58 PM
I'm just having a bad day... Tomorrow will be better. It is getting better each day, minute by minute, hour by hour. I'll be okay.:)

jrnyc
06-08-2010, 07:17 PM
:) good to hear...

jess

rohrer01
06-10-2010, 10:31 AM
Well, I have good news to report. I slept through the night last night for the first time without "clock watching" as to when I could take my next percocet. I woke up around 8AM and WASN'T drenched with sweat for the first time!:D Today is day 10 of no fentanyl. I did take my percocet this morning but am hurting pretty badly, but this is nothing compared with getting rid of that detox feeling. Now I can address my pain and hopefully treat it in a more productive way with shots or something. I'm very happy!:)

mbeckoff
06-10-2010, 10:37 AM
What great news!
Hope you have a wonderful day

Melissa

Back-out
06-10-2010, 02:21 PM
Super great!!

And figure you've done this for many more, who/ve been inspired and informed - also warned. Just look at the viewings this thread has gotten!

lizmar
06-10-2010, 07:41 PM
I have curviture of the spine. I am having to take codeine, paracetomol and nurofen during the day due to the pain I am having which includes the back of the head. I have been to various specialists about my back, nothing more can be done as I also have respiratory failure. I am fed up with taking so many painkillers especialy when they don't work that well.

What can be the cause of my problem and what can be done? I even have been given a support by the pain clinic but it doesn't help the head pain only stops my rib hump rubbing.

I previously had an injection many years ago which helped the back pain, however when I last went to Stanmore I was told that they couldn't do it, which I can't understand.

I look forward to your comments.

Many thanks

Back-out
06-10-2010, 08:07 PM
So very sorry, Liz!!

To get proper attention to your important query, suggest you start a new thread, and at that time explain more about your pain sources and history,

No one here is a doctor, mind you, and it sounds as if your questions require a lot of specialized knowledge, What has caused the respiratory failure (for intance) and what is your age? What angles and other measurements have you been given for your curvature? I wonder too what docs you've seen and whether they ruled out surgery. Or have you already had surgery?

Sounds just awful! :(

jrnyc
06-11-2010, 09:47 PM
hey rohr
i just got back from 2 days in NYC and read your post about sleeping thru the nite...good to hear that! i hope it gets better and easier to do that as the days pass...

i saw pain doctor in NYC and got an epidural for the sciatica on my left side...so far, it is actually helping...and i am shocked...my expectations for this were very low!

i am so sorry that you are still in pain...am wondering whether you expect to get to zero percocet..and how that will go if you are still in pain...

hope you feel better soon...
jess

rohrer01
06-11-2010, 11:51 PM
hey rohr
i just got back from 2 days in NYC and read your post about sleeping thru the nite...good to hear that! i hope it gets better and easier to do that as the days pass...

i saw pain doctor in NYC and got an epidural for the sciatica on my left side...so far, it is actually helping...and i am shocked...my expectations for this were very low!

i am so sorry that you are still in pain...am wondering whether you expect to get to zero percocet..and how that will go if you are still in pain...

hope you feel better soon...
jess

I would "like" to get to zero percocet. But realisitcally it probably won't ever happen. I have had it by my side, whether I need it or not, for the last decade or so. I'm hoping to get where I don't need the percocet daily. I'm not there, yet. I think I've had enough feeling sick for a while. I'm giving myself a month to get off of it if I can. I'm down to about 3 a day, so I'm doing pretty good considering that I was taking that much plus 50mcg of fentanyl at some point. The fentanyl worked for a short while, but eventually just lowered my pain thresh-hold. Soooo, thank you for the encouragement. I hope I have been an inspiration to others out there in my shoes!;)

jrnyc
06-11-2010, 11:56 PM
i think you're doing great :)

jess

mbeckoff
06-12-2010, 09:42 AM
I think that you are doing wonderful as well

Melissa

rohrer01
06-14-2010, 12:16 AM
Okay, it's after midnight and today is a new day! I'm going to try a percocet free day and see how it goes. I'll let you all know if I succeed. You are a great bunch of supportive people. I appreciate you all very much!:D

rohrer01
06-14-2010, 02:33 PM
Well I caved in just after 2:00pm. :( I went over 16 hours with no pain meds, though. So I'm still doing well.:D The pain just got to be too much and I DON'T want to end up in the ER struggling to get it under control. I'm having neck/upper back pain and muscle spasm in my lower back. Oddly enough my legs hurt SOOOO BAD on my upper thighs (on the tops). I don't know what that is from, unless it is residual muscle pain from my walking regimen that I never felt due to pain meds. Although, I haven't been walking that much since I've been detoxing. I don't want to add insult to injury just yet. I was up to about 2 to 2 1/2 miles a day (3 times a week at the very least). I took tylenol just before noon and it didn't do a thing. I am also watching my acetaminophen intake. They recommend not going over 3g per day. I'm only up to 825mg so I'm okay there. I also tried soaking in the tub. I tried going for a walk, and just a short walk hurt my legs so badly AND I got rained on. I'm going to suppliment with tylenol throughout the day. I don't know if I'll need any percocet tonight. We'll see what tonight brings. It's now been about 20 minutes since my cave-in and I'm already starting to feel better, although the pain isn't "gone". I can handle tolerable. :rolleyes:
Thanks for "listening"!:o

jrnyc
06-14-2010, 02:38 PM
i would expect you will feel everything without pain meds...walking that many miles a day should register on the pain scale without pain meds to cushion it...you probably didnt notice it before!
what could an ER do for pain....besides administer pain meds? better to take them at home by yourself!

jess

rohrer01
06-14-2010, 04:11 PM
what could an ER do for pain....besides administer pain meds?
jess

Exactly why I "caved". ;)

rohrer01
06-24-2010, 02:39 PM
Well I thought I would give you all an update. I am unable to get off of the percocet. The pain just gets out of hand. I was down to 3 sometimes 2 a day and have had another pain flare-up. This time the percocet isn't touching it unless I take it every 3 or 4 hours. It's discouraging to say the least. It's not that the pain is way up there on the pain scale, but it is really wearing me down. I broke down and am scheduling an appointment to see Dr. Hey in North Carolina, as he seems to be the only one who has shown me a lick of compassion as far as SRS doctors are concerned. My neurosurgeon and my general practitioner, who has seen me struggle for the last 12 years both agree that I should have the surgery. The only ones that don't think I should are my pain doc and the surgeon that I saw back in May. I'm so afraid that if I have surgery it will end up worse. Dr. Hey thinks that because of how high my curvature is, it is putting a very heavy load on my neck and that is probably the cause of all this neck pain. I sure hope he's right because I'm ready to take the leap over to the surgical side. They need a "fear" emoticon. I really don't know what to do. Conservative therapies have failed me and I'm sick (literally) of being on narcotics. NSAIDS are out of the question as my stomach hurts so badly most of the time. Just another thing I need to go back to the doctor for. Is it just me, or is anyone else out there sick and tired of living at the doctor's office?

foofer
06-24-2010, 10:22 PM
Rohrer,

I'm glad to hear you made the appointment with Dr Hey. I have the feeling this will be very encouraging. Will you have to fly to get there? Take the train? When is your appointment?

I still think you are doing great with your meds. You have downscaled considerably, so don't let perfectionism talk you out of feeling your success. It doesn't have to be all or nothing. Perhaps when your pain episode subsides you can cut back again. Bear in mind that I am speaking from logic which may not apply to what you are dealing with. (What I'm trying to say is that I don't really know what I'm talking about.) It's just that I feel supportive of you, your truth and honesty and efforts, and I really hope you make it with your goals.

Also I wanted to say previously when I read another of your posts...what the heck are you doing lifting your grandchild out of his carseat? I have a new grandchild and the other day I just moved in and started to unbuckle him and lift him out of his stroller. My stepdaughter was astute enough to say, "Hey let me do that" and I did it anyway insisting I was okay. What the heck was I doing? I have no business treating my back and neck that way and neither do you. I have noticed that the minute I overdo any efforts, my neck feels it first. Today my shoulders are strained and I have a neck headache. It happens so easily. So stop it, okay? And I will too. Deal?

Hang in there, please.:o

rohrer01
06-24-2010, 11:07 PM
Thanks, Amy. Your post made me feel better about my situation. My pain isn't gone just because I went off the meds. It was certainly a trade-off. Meds or pain. I chose pain, although I would like it to be tolerable. With percocet it is tolerable but not gone. I am trying to be realistic about my goals. That's why I haven't given up the percocet. Tylenol alone just doesn't do anything and not being allowed to take NSAIDS, what choice do I have left? I still have pain even with my medicine.

Yes, I do stupid stuff, but when my daughter asked me to put the grandbaby in the car today I just looked at her and said, "You know that hurts my back when I do that." She almost looked taken aback a little and said, "Oh, I forgot." That's how it is. I whine and complain all of the time, but I don't think anyone really gets it. Sometimes I think the family thinks I complain to get attention and there really isn't a problem. Mom's can do everything, don't you know. I think that since I do everything for everyone at my house, they just don't realize...:rolleyes:

I made an appointment with Dr. Hey in NC because I don't know what else to do. When he called me on the phone, he was so understanding. That's something I've never experienced in the SRS doctor world. My current SRS doctor started out understanding, but when I went in while in pain crisis he was of no help what-so-ever.

My mom is afraid that Dr. Hey is knife-happy and just wants another patient. I'll admit that there are smooth talking cons practicing medicine, but I honestly don't think that the SRS or Duke University would risk their reputations supporting someone who didn't know his business. Linda Racine said he is well respected in the spine community. I just wish I could find someone on the forum who has actually seen him. There's lots of good things said about him, but no actual patients. Maybe they don't feel the need to come on the forums because they are too busy living their lives.

Well I'm rambling again and it's getting late. Thanks for "listening" for all those following this thread. :D

mbeckoff
06-24-2010, 11:09 PM
Where is DR Hey located and where do you live?

Melissa

rohrer01
06-24-2010, 11:17 PM
Rohrer,

I'm glad to hear you made the appointment with Dr Hey. I have the feeling this will be very encouraging. Will you have to fly to get there? Take the train? When is your appointment?



I haven't decided if me and hubby will fly or drive the family and make a vacation out of it. I would really like to see the east coast. I've never seen it before. I guess it all depends on the money situation as the time gets closer. It's going to be a two day drive one way if we take that route. I don't know if we can afford that much time off work. My appointment is at the end of August. I made it far enough out so that I have some time to fight with my insurance carrier.:eek:

rohrer01
06-24-2010, 11:18 PM
Dr. Hey is in North Carolina and I am in the Midwest.

rohrer01
06-27-2010, 12:43 AM
I'm having trouble keeping up with pain on just percocet. I feel like this is a major setback. I started taking soma, but not every day, just days that I feel I've taken too much percoset and don't want anymore. I need some encouragement. I went off of my meds knowing my pain was still bad. I guess this is what I expected. I HOPED that it would subside, but WRONG! Words of encouragement welcome. Suggestions welcome. Scolding welcome. I feel like I need to go back on klonopin to cut down on my percocet use. The problem is that I am taking a "break" from birth control, as I think that is what was causing my night sweats to continue. The night sweats are gone for about 3 to 5 days now. It's too late to use a backup form of birth control. Seems weird, because I know realistically I can't handle having a baby right now in my condition, but on the other hand getting preggo will somehow "save" me from my decision to go forward with my surgery. I'm really struggling here and I really, REALLY HATE pain!:(

rohrer01
06-27-2010, 12:46 AM
I'm really scared about what my future holds, surgery or no surgery. I am obsessed and consumed with the fear of surgery, yet I know I need it to stop the progression and hopefully to help or halt the pain where it is. Please help me with some words. I really need it right now.

jrnyc
06-27-2010, 09:07 AM
hi rohr
please...please do not get pregnant now...i think that idea is absolutely crazy...and there is back up birth control..all kinds!

i thought klonipin is more of a tranquilizer than pain med...or am i wrong about that...?

i am wondering if seeing a therapist would help...just to have someone to talk to about all this anxiety and fear...pretty sure it couldnt hurt!
i believe that fear and anxiety worsen pain...they intensify everything...also...are you on an antidepressant...if so, do you think it is working...?

i am asking these questions out of concern for you...

jess

Back-out
06-27-2010, 10:35 AM
I'm really scared about what my future holds, surgery or no surgery. I am obsessed and consumed with the fear of surgery, yet I know I need it to stop the progression and hopefully to help or halt the pain where it is. Please help me with some words. I really need it right now.

I feel much the same except that I am alone without family support and a lot older than you.

Also, not in the market for a pregnancy (BTW pregnancy is not exactly a recipe for no pain for someone with a severe back condition - and talk about needing to withdraw from many helpful meds then - forcibly! :eek:)

You ask for "words" (of advice?).

I don't know what all you are taking now, but I remember you were so worried about NSAIDS at one point, you were talking about discontinuing them. I advise in favor of taking NSAIDS. I think they're a lot safer than opiates - psychologically. I've also found they work as well or better to relieve orthopedic pain. I really depend on Aleve and/or Diclofenac. (FWIW I am down to under 1 mg Klonopin daily too).

In one of my posts here I included a link that listed meds to take WITH NSAIDS to lessen or eliminate the GI effects, I don't know why this option is not considered more to allow people with constant pain to take them with less risk. There is universal agreement that all pain meds, all symptom relieving meds in general, are only really safe for the temporary relief of acute conditions.

Well, that's just dandy as a medical insight but what we need are ways to make medication for chronic conditions safer. We can't just turn all chronic conditions into acute ones. Those NSAID coordinating meds are one way!

rohrer01
06-27-2010, 11:06 AM
Thanks Jess & Amanda,

You both are always there when I need someone. Surely appreciated. I know that pregnancy is the last thing I need right now. I'm too far into my cycle to use birth control as it would be "after the fact" right now. My body really needed a break from the hormones, though. I will start again when I get my monthly.

I am under strict doctor's oders, NO nsaids. The only thing I have been taking is the percocet and I might as well be eating smarties. They haven't even been touching this pain. Here I get all convinced that I'm just a druggie. My srs doc told me I have a "drug problem". So I take that to heart and quit all the meds. The pain is too severe to do that! Now I'm suffering

Last night was a night from hades! I was fine in my hospital bed, reading and studying some things. I went to lower the bed to go to sleep and all heck broke loose. The bones in my spine felt like they were broken, then the pain went around my ribs into my sternum. I felt like maybe I was having a heart attack! Boy if I ever do have a heart attack, I'll probably die because I'll be thinking it is my back acting up! It hurt so badly I was crying and yelling (softly), didn't want to wake up the baby. My hubby and I looked into my bag of meds and agreed that I have everything they would use to help me at the ER. ER visits are soooo embarrassing!:o I had already taken percocet and soma. So next on the list was klonopin. I broke down and took it. We both agreed that maybe I should go back on the fentanyl because my nights are just atrocious. I don't want to do that until I can get an appointment with my doctor, who is out of town next week. I have a 10 day supply, but want to make sure I can see him before the 10 days are up. I am now seriously considering the intrathecal thing that the pain doc suggested. I just can't live this way. I don't know why Dr. Tribus doesn't believe me...:mad:

As for the antidepressants, I can't take any. My cardiologist said absolutely NO antidepressants of any kind. They aggrivate my arrythmia and send me into MAJOR tachycardia. I do know that they help with pain, but my GP has put me on several, and I have gotten the tachy on every single one. So you see, I'm very limited. I also can't take some muscle relaxants for the same reason. Soma even gives me tachy, but when I'm desperate enough, I put up with it and that's probably not a good thing. Maybe that is what triggered my episode last night, who knows? So I'm pretty limited to benzodiazepines and opiates and tylenol.

Oh, and I've been to therapy for various reasons. I find it a complete waste of time. I get better feedback from you all who know what I'm dealing with. A therapist can't relate to everything you are going through. Their advice is nothing more than common sense.

Sorry for rambling. It seems that those of you who suffer with this God-aweful condition are the only ones who truly understand. Thanks for being there for me! ((((HUGS))))

Back-out
06-27-2010, 11:07 AM
Here is a repeat excerpt about "risk mitigation strategies" for taking NSAIDS. Note that these co-therapies only apply to reducing the GI effects, and that there is no way to reduce the so-called cardio-toxic effects. However, for most, they are far less prevalent.

Even though they are made to sound unworkable in the context of this article, I don't think anyone in a pain relief bind should neglect to explore these ways of making NSAIDs safer for the relief of chronic pain.

Nb. I do NOT agree that opioids are safer, as this article contends. That's a "solution" which completely neglects the psychological risks not to mention other side effects that can develop over time, especially with increased dose level (hearing loss, memory damage and more).

That's not even counting the unresolved problem of the development of tolerance, which is a virtual certainty. Addiction is a serious problem for the patient and his/her family and with constant exposure (when pain is not otherwise relieved), is almost impossible to avoid.

*****



Four classes of drugs are available as co-therapy for reducing GI toxicity with traditional oral NSAIDs: proton pump inhibitors (PPIs), histamine H2-blockers, antacids, and prostaglandins (eg, misoprostol). The decision to initiate such co-therapy is dependent on several factors, including increased risks of serious GI complications in the following groups: [see, Ong et al. 2007; Risser et al. 2009].
• Patients with a prior history of peptic ulcer disease,
• those taking corticosteroids or anticoagulants,
• patients adjunctively taking aspirin as antithrombotic therapy,
• patients over the age of 65.

http://updates.pain-topics.org/2010/03/nsaid-dangers-may-limit-pain-relief.html

rohrer01
06-27-2010, 01:47 PM
I "wish" I could take nsaids. They are completely out of the question for me right now. They do work, but they also do a number on my heart and gut. My doc fears kidney failure from such long term use, so until I get his okay it's not even an option for me. Narcotics definitely do have their limitations. Yes, you develop a tolerance and yes it interferes with memory BIG time! I feel as though I have alzheimer's sometimes. My kids joke and tell me I'm senile. But the joke really is on me because I think at times I really am.:o

Back-out
06-27-2010, 02:11 PM
I "wish" I could take nsaids. They are completely out of the question for me right now. They do work, but they also do a number on my heart and gut. My doc fears kidney failure from such long term use, so until I get his okay it's not even an option for me. Narcotics definitely do have their limitations. Yes, you develop a tolerance and yes it interferes with memory BIG time! I feel as though I have alzheimer's sometimes. My kids joke and tell me I'm senile. But the joke really is on me because I think at times I really am.:o

HAHA. (hollow laugh) I've heard NSAIDs can interfere with memory, BTW. Oops, told you that, I think. :rolleyes: Where my mom lives in FL with other elderly women in a retirement appartment building, Alzheimers is a big joke - kind of a way of coping. (Eg.: Q "What's good about Alzheimer's?' A "You can hide your own Easter Eggs." Q "What's good about Alzheimer's?' A "You can wrap your own Christmas presents" Per my son - for Jews - "You can hide your own Afikomen.")

Don't know how we're even supposed to remember what pills to take and when...In fact, this is a big problem in the older population and by itself can lead to nursing home placement. Haha -- NOT. If only we could forget we're in pain!

Note Lynette's terrific success with hypnotherapy. Remember her excruciating leg pain? Worth looking up that thread if you weren't part of it. WHich reminds me to point out (again) that pain itself carries health risks. Life IS a fatal disease. With all the massive contraindications on pain meds, something's got to give. Like the surgery itself, all treatment is to a degree a "choose your poison" issue - cost:benefit

Bottom line, maybe it's worth taking a chance on low-dose NSAIDS with a "mitigating" coordinating medication at least for GI risks (which seem to be the most important for you). Sux, but the fact is, the treatment of chronic pain is a medical crisis for all who suffer from it. Compromises must be part of the treatment plan the same as for any issue for which the treatment carries a measure of long-term risk. My pharmacist told me when I went off that whopping narcotic dose a year ago (and was taking an ultra high level of NSAIDS temporarily) that it was a question of "when not if" I was going to have a fatal G-I bleed!

I chose to take them anyhow, to help me get off the opiates. And I'm glad.

jrnyc
06-27-2010, 02:35 PM
hi rohr
i understand that you can absolutely positively not take NSAIDS...you said they helped you...they never ever helped me...not Relafen, or all the others they tried me on! i developed gastrointestinal problems from something else, so couldnt take them now anyway, but wouldnt want to !!

i am not sure what the klonopin does for you, since it is more like a calming thing...?? or does it relax you so that your muscles then relax?

i disagree with you about the therapist...as a retired clinical S.W., i believe having an objective person who wants to help you is always helpful...you just gotta find the right one! sorry you havent had any good experiences with any...

have you discussed why your pain is so intense with pain management doctor? mine pain doc is Russian, very serious, very intense, and very determined to eliminate pain in every one of his patients...as long as i dont talk surgery with him, he doesnt give up on me..so i dont discuss it with him...he is convinced i would still have pain after surgery, and "maybe worse pain" :rolleyes:

but i am wondering what your pain management guy thinks...and if he is not any good...can you go to a different one?

hope you feel better
jess

rohrer01
06-27-2010, 04:40 PM
My pain doc says the same thing about surgery. No one can really tell me where my pain is coming from since scoli isn't supposed to be painful. I think he believes it is coming from the scoli though. His exact words to me are "A pretty straight spine isn't necessarily a pain free spine... With the degree of pathology that you have you will never be off of pain meds." My GP thinks it is coming from the scoli, my neurosurgeon thinks it is coming from the scoli. I have been thoroughly check out and nothing else is really that severe and there is NOTHING else in the T-spine. My pain doc wants to do the intrathecal thing, so I haven't gone back. I'm seriously considering it now. He says that if I have surgery that if the surgeon leaves the catheter in, it will help with post-op pain management.

I think maybe I'll write to Dr. Hey and see what he thinks about the whole thing. I have also been offered pressure point injections, but this feels like it is in the bones. This is exactly why I need the surgery. Heck, I don't want it to get worse, and if I'm stuck at the pain levels that I have now, at least I'll know what I'm dealing with. I can't imagine it getting worse. I've been in bed all day as it is, except to run over here to the computer and talk to you all.

I called the ER because the pain started up again this afternoon like it was last night. They weren't helpful at all. I just wanted to know the symptoms of a heart attack as I know it can be different in women. They suggested maybe it was blood clots. They didn't seem too concerned about getting me in there either. Small town ER's stink! The chest pain went away, thankfully, for now at least. It starts in the region of my scoli, runs around my ribcage on both sides and lands in my sternum. It's excruciating and a "new" symptom. I was bawling like a baby last night. Today it was the same thing but not as severe. It sure put the fear in me that it would get as bad as last night.

Thankfully my hubby let me get a craftmatic adjustable bed. I sleep on it when I have bad nights or bad days like today. It is a lifesaver. I don't know how those that have had their surgeries can live without them. I spent a whopping $70 for the mechanical part used, then bought a new memory foam mattress (from Wal-Mart...yes I said that right) and put an egg crate foam topper on it for a grand total of $270. Not bad for a $1500 bed! :D It even has vibrations in it. I can't use the high as it hurts my bones, but on low it feels like a smooth car ride.

rohrer01
06-27-2010, 04:42 PM
I should post a picture of my back. I stand straight enough, but you can clearly see that the muscles are all messed up due to the curvature. I actually get a huge hole under my left scapula. It looks like my muscles are deformed, not a pretty sight really. I wear long hair to hide it.

Back-out
06-27-2010, 07:03 PM
Sounds sucky, rohrer. I KNOW you are really suffering.

I was glancing around this pain management site I linked before, and got a surprising amount out of reading some of the articles about managing chronic pain. More than the articles themselves, I was helped reading long commentaries at the ends, from patients suffering from intractable chronic pain - how they cope. It is heart-breaking to read some of their stories: absolutely to the point and with details of suffering that blew my mind.

The articles/commentaries about opiate use and especially problems associated with it (for non-cancer patients) were informative as well as touching. One wonders how some people stand pain which clearly surpasses my own experience and understanding (and I speak as someone who spent most of the weekend in bed reading - erm, Harry Potter, to get my mind off it:o). Indeed, some wrote in frankly how hard it is to fight the urge to just throw in the towel on bad days. There are lives of unrelieved pain, stood with quiet courage in the shadows of life as most know it - experiences that others never have to think about.

The point is repeatedly made, in fact, about how hard ( if not impossible), it is, to get "non-pain-patients" to understand the life experience of such patients. That there are two completely separate worlds - and the PAIN world is unimaginable to the NON-PAIN world.

Opiate medication, even "hyperalgesia" or hyper-opiate medicatioo. stood out as a life saver for many. Its ability to give sufferers the ability to hang on and maintain some quality of life and relationships, was striking. Also, the very real health dangers of suffering unrelieved chronic pain (among much else): immuno-suppression, heart attacks, High BP, depression. This is especially when prescribed with great expertise and sensitivity (for example. rotating opiates).

I'm sure there are other sites online where people in severe chronic pain support each other too. The management of chronic pain really is a special black hole in modern medicine. However, we can and should be grateful for the more enlightened attitude to opiate medication today compared to what existed even a few decades ago in this country.

It's worth remembering too (as I did reading that site) that many people in excruciating pain from problems like ours, do NOT even have the luxury of considering surgery because of their overall condition. We're very lucky in that regard. It means that at every point, in a sense, we're deciding to take pain medication (if we do) instead of opting for surgery. This reduces our pain in a way - at least, I feel that. It's very different to be locked into a tortured body KNOWING there's not even an imagined way out!

BTW I learned that some people have a genetic idiosyncrasy which makes them require much higher opiate dosages than normal, to get any relief at all. One such patient reported having had minor surgery without being knocked out because of it. It would have killed her to have the level of sedation accompanying the needed level of analgesia. She said her doctor (and she) were very worried about what she would do if and when she should need heart surgery or were in a car crash.

(I worry about car crashes too - as we all must - more than average, that is. Her concern is different, though).

http://updates.pain-topics.org/2009/11/how-much-relief-from-chronic-pain-is.html
Check out the links in the right hand column.

Back-out
06-27-2010, 07:05 PM
PS

I never forget the story of a the tortured death of the father of a good friend. He died twenty years ago in absolute agony from advanced prostate cancer. It stands out in my memory for two reasons.

a) because the reason he suffered so terribly was THE reason of the times: denial of opiates because of "fear of addiction"! Heh, in a terminal cancer patient!?!

b) because they were one of THE richest families I grew up with. I'm sure their total investments were worth > a billion $!

But even that great wealth couldn't buy him pain relief by using opiates at that point in American medical history. Things are much, much better now though they need to improve still more.

rohrer01
06-27-2010, 08:28 PM
Amanda,

That article really hit the nail on the head! This is EXACTLY how pain has affected my life. I have always been a person that enjoys activity, but pain has prevented me from either doing activity or enjoying it - forcing myself. It completely robs you of energy and makes you feel like nothing but a lazy slob. I'm not a lazy slob, I'm in pain. I force myself to clean house after four other people, three of which should be doing it when I'm down. The article is sooo right that people in the non-pain world have NO IDEA what it is like for those of us in the pain world. I feel guilty when I take any meds, but if I don't, I won't function at all.

Jess,
I forgot to answer your question about klonopin. It is a benzodiazepine that acts not only as an anxiolytic but also as a muscle relaxant. Valium does the same thing for most people, but it doesn't work for me.

jrnyc
06-27-2010, 09:51 PM
hey rohr...
yes, i know klonopin is a relaxer...figure it relaxes you and your muscles follow....

i once wrote here what we used to tell our Lyme doctors back in the day......"give us the pain meds now for the pain...we'll worry about the addiction later!" :rolleyes: we were in so much pain in so many parts of our bodies...we just wanted out from under...

jess

rohrer01
06-28-2010, 09:21 AM
Well, I'm "hoping" my major pain crisis is over. I slept through the night last night without waking up to take pain meds. I went 10 hours, although I am quite sore this morning. Sore is not the same as what I was feeling. Thanks for all the support. You guys really helped me through. ;)

Back-out
06-28-2010, 10:02 AM
Great news!

Pain IS frightening. The world looks entirely different when one is in severe pain and when one is not. All decision-making changes too. From what I read here, this is one of the variables that most confuses people who are going back and forth about surgery - whether one is in that pain-induced state of desperation or not.

It's so hard to remember pain! As a fact, no - but as a reality, yes. If we can't even fully remember our own suffering, how in the world can "non-pain-people" understand what it does to one's outlook?

For me, the goal is to keep below that thresh-hold of feeling trapped in an intolerable state. I can't be rational otherwise. Unfortunately, anxiety has a lot to do with it, and I have not found a way to manage that well - so many variables, all too realistic in my life.

Wishing you a terrific, TOLERABLE day! :)

jrnyc
06-28-2010, 10:04 AM
hey rohr
:)

jess

rohrer01
06-28-2010, 03:48 PM
Well it's black cap season (3 weeks early), so we'll see how I hold up trudging through the woods to get berries for jelly. :D

jrnyc
06-28-2010, 04:25 PM
hi rohr
one of the things about feeling better, or having less pain, is that it is easy to over do it ....i fear you are attempting too much...and will be posting about how much pain you are in after you gather the berries...or after you make the jelly...

just a friendly warning...:)
jess

rohrer01
06-28-2010, 08:21 PM
I know, but oddly enough my family depends on the jelly. Not that they will die without it. It's just that is what we eat on our buscuits all winter and they are ripe NOW. My hubby came home from work and went out with me to gather more. Yes, I'm a little sore, but I didn't do anything too strenuous, as the park where I gather berries is only two blocks from my house, and I drove. :)

CHRIS WBS
06-29-2010, 10:02 AM
I just wish I could find someone on the forum who has actually seen him. There's lots of good things said about him, but no actual patients. Maybe they don't feel the need to come on the forums because they are too busy living their lives.

Well here’s one, but it’s an old post. http://scoliosis.org/forum/showpost.php?p=10095&postcount=2

If you do a search on Raleigh, you’ll find a number of posts associated with Hey. For some reason, Hey is not recognizable in the search.

rohrer01
06-29-2010, 10:32 AM
Well here’s one, but it’s an old post. http://scoliosis.org/forum/showpost.php?p=10095&postcount=2

If you do a search on Raleigh, you’ll find a number of posts associated with Hey. For some reason, Hey is not recognizable in the search.

Thank you sooo much!!:D

LindaRacine
06-29-2010, 02:00 PM
For some reason, Hey is not recognizable in the search.

For some reason, it doesn't like short words.

Writer
07-06-2010, 04:19 AM
Rohrer,

Did you ever call one of the Schroth clinics in Stevens Point or Milwaukee? See my post on the first page of this thread. If your pain is primarily related to scoliotic posture, they can probably fix it.

rohrer01
07-06-2010, 08:24 AM
Rohrer,

Did you ever call one of the Schroth clinics in Stevens Point or Milwaukee? See my post on the first page of this thread. If your pain is primarily related to scoliotic posture, they can probably fix it.

No, I haven't. I don't think my pain is related to posture, as I have good balance. I have bone pain in the curves and muscle pain surrounding the curves. There's also no way I could ever afford it. I remember when I was a kid, they sent me to specialized PT at the scoliosis clinic to work on posture. They really did more harm than good. They had me back up against a wall and press the small of my back against the wall and also press my neck up against the wall. This removed ALL of the natural lordosis in my lumbar spine and my neck. I don't know what in the word they were thinking! Naturally it increased my pain and now my lordosis is gone. I'm not against going to Schroth to maybe work on these issues, but there's no way for me to pay for it as I am just poor folk. :rolleyes:

rohrer01
07-06-2010, 10:43 PM
Well, everyone, I did it. My neck pain is not going away and I can't get off the pain meds so I cut off my long hair. I have had so many well meaning people tell me that is my problem (we all know it's not true) so I cut it off. I think I will wear it this way until I get my surgery, IF I get my surgery. Insurance will be the only thing stopping me if Dr. Hey agrees that I need it. I HATE fighting with insurance companies! Anyway, back to the hair, I figured I would rather get used to it for a while so that it's not another change. I won't need help taking care of it like I would with the long hair. I feel bald!:eek: I'm not bald, just a cute little bob cut that is easily grown out. My hairstylist was rather mortified when I told her to cut it. But I donated it to Locks of Love.:D

mbeckoff
07-06-2010, 10:55 PM
That is great to donate it to locks of love.What a great thing to do

Melissa

rohrer01
07-17-2010, 10:29 PM
Hi, all. I've been having a rough time of things lately. I have even broken down and put a fentanyl patch on a couple of times. My doc's appt didn't go so well as I had the little one with me and really didn't get a chance to address ANY of my concerns. It was very frustrating to say the least. I'm back to taking klonopin as needed. The pain is just too severe to quit everything like I thought I could. I was hoping that I would be okay, but I'm not. The doc that told me I have a drug problem has a problem with not understanding how painful this condition is! I just have to hold out until August when I get to see Dr. Hey in NC. I'm so looking forward to this appointment. He seemed like he really cared about my quality of life, which really stinks right now. I'm not able to enjoy my grandson the way I would like to. He's too little to understand that grandma hurts. In fact, I don't think ANY member in my family really understands. It really makes me sad that they don't take this seriously. I guess they are just used to me complaining. I try not to, and when I don't, they just assume that I'm pain free. The truth is, I'm never pain free.:(

Scoliosis Hurts
11-05-2010, 06:06 PM
Yes - went from 40mg oxycontin daily to 280mg per day today in past 12 months (80mg x 3 per day plus 10mg Instant Release x 4 per day as needed)

Also tried Lorazepam, Diazepam, Clonazepam - all worked fine, Clonazepam last longest. Diazepam shortest. Loraz - not bad.

Detox - slowly taper down - if possible - depends on your pain*** and there are options. Try natural remedies like ;

Eat healthily,
take vitamin supplements, B's!!!!
drink herbal tea, exercise,
take long walks, breath in fresh air, take hot baths (highly recommend Radox Muscle Soak ),
when in bed/indoors occupy your brain (read, watch DVD's, go online).

Keep busy an emotionally involved. Make things happen. Speak to friends.


Just wondering if anyone has been on long term opiates and benzodiazepine (valium, klonopin, xanax, etc.) and try to detox? I'm feeling better (hubby is getting the hang of how to get rid of my muscle spasms through massage and pressure) and want to detox. I've only been on them for two and a half months or so and am SOOOO sick. I was on oxycontin for about two or three years once and got very sick getting off of this. But after only a little over two months I didn't expect this much trouble. If anyone has any words of advice, I'm all ears. I do have a doctor's appointment on Thursday, so I'm going to ask him for help.

rohrer01
05-04-2012, 01:27 PM
Hi, all. I dug this old thread up because I figured it was the best place to start with my "new" journey. I'm still not drug free. I have to take muscle relaxants (baclofen) because of they dystonia. Percocet doesn't seem to help much, so I probably take more than I should, but not more than 4 a day at 5mg. I took only one the other day and was okay, but that was a low pain day. I'm weaning off of Klonopin, ...again. I'm not trying to get totally off, but I'm at my max dose so have no rescue for when things get really tough. My dose isn't that high to begin with. It's 0.5mg three times a day. I want to get down to once at night. I really do need it for muscle spasms, too. But like I said, I have nothing more to take when the spasms are bad if I take the max dose. So those are the BIG three. I have to take my heart medicine. The other stuff I'm on is vitamins and minerals.

My new journey: I'm starting an exercise program...AGAIN. I've been going round and round with exercise since forever. Some programs or routines help, some don't. I think I have felt the best overall when I'm in good physical and cardiovascular conditioning. Doing a few floor exercises prescribed by PT's doesn't address this at all.

My mom gave me a treadmill, bless her heart! I've been using that off and on for quite some time. I've enrolled in the heart center's fitness program at our local hospital. I have to start there because of my arrhythmia and asthma. Day one was on Wednesday and Day two was today. Day one was totally easy. Today was quite a challenge because I tried to get to the target level on the equipment, which I found to be difficult and I upped my at-home treadmill to include an incline -- YIKES. I also stink at the eliptical machine. I could only stay on it for five minutes before I was totally pooped, out of breath, legs and back hurting. The treadmill was great. I can "walk" it seems endlessly at this point. The recumbant bike hurt my lower back. It seems these days that lying and sitting hurt worse than standing and walking. Although, if I stand for too long it hurts pretty bad, too. Keeping myself moving is the best thing. I would like to do that as much as possible, but I'm so tired all of the time and am in terrible shape for me. I could NEVER hike the bluffs that I used to hike only 10 years ago. Pain causes one to be sedentary which causes one to get out of shape which increases pain which causes one to be more sedentary which causes one to get even more out of shape which causes even more pain... Need I say more?

The only drawback here is that when I'm doing great physically and am strong, I tend to forget my limitations and get hurt - really badly. That's happened even when I don't forget my limitations. I've been in shape and got hurt - really badly - from leaning over to brush my teeth. So this new program is no guarantee for me. I go into it knowing this. BUT, I want to be healthy and gain some muscle mass back and gain endurance back. Hopefully I will feel better overall.

So, I will be updating here, or at least I will try. I wish you all the best in whatever you are doing to keep your pain under control.

Rohrer01

mabeckoff
05-04-2012, 01:37 PM
I hope that it works out for you.

loves to skate
05-04-2012, 02:54 PM
I hope it works for you also Rohrer. I know I feel so much better when I keep moving. I have been doing core strengthening exercises which while making my core stronger, it does nothing for my pain. Walking is great for me and I have a treadmill for the too hot days or rainy days or the too cold days, but I admit to being inconsistent. Right now I am recovering from the shingles and can't believe how weak I feel. I hope I perk up tonight because there is a line dance party in our community this evening. That and roller skating are the best get moving exercises for me. I have so much fun, I totally forget about my pain.

rohrer01
05-04-2012, 04:41 PM
Thanks Melissa and Sally. Moving does seem to get your mind off of things. Although, there was a point when my lower back hurt so badly that I could barely walk. I still forced myself to walk a mile around the neighborhood. It was excruciating and didn't help at all. At least I didn't think so. I don't want to let it get that bad again.

jrnyc
05-04-2012, 08:51 PM
hi rohr
back when i used to exercise..when i was still working in NYC...before the pain was so very bad....
i made myself go to the gym every day, or at the least every other day...forced myself, because
i always hated gym exercise, even when i worked out a lot...i just made myself do it...
my point is that when i first started, i could only do 3 minutes on the recumbent bike
or elliptical machine...literally...i was so out of shape, lungs, heart, etc...& i was not overweight...
by going so often, i got up to 50 minutes plus on the cardio...it was hell, as far as i
was concerned...i forced myself to go, to build up the stamina...i went after grad school,
after a full day of work...it was work, school, gym, home...day after day, until i could
stay on those damn machines for almost an hour at a time...

i got a trainer, too, though it wasn't required...i kept telling him "your job is to not let
me quit, because i hate this exercise stuff"

anyway, that would be my suggestion, to build up time on the cardio machines...
IF you can make the time to go so often....i don't know how far away the gym is from where you live....
but consistent repetition does the job...

good luck with it....DO NOT overdo it so you do not injure youself!!!
jess

LindaRacine
05-04-2012, 09:17 PM
Because of my back issues, and a tendency to over work, I've been through a bunch of cycles of getting fit, and then doing nothing for long periods of time. For example, prior to returning to work last May, I was working out at least 3 times a week, plus doing physical therapy exercises at least 2 times a day. When I went back to work, all exercise stopped. So, like you Rohrer, I also have a tendency to hurt myself by not easing back into an exercise routine. The last 2 times I've gone back to exercising, I've started in the swimming pool. I really like it, because I can work hard, with very little risk of injuring myself. If water walking, deep water aerobics, or deep water exercise is an option for you, I highly recommend giving it a shot.

--Linda

rohrer01
05-05-2012, 03:41 PM
Thanks Jess and Linda.

All of your suggestions are great. Right now I go to the local "rural" hospital where they do have a cardio program. I have to start there because of the heart thing and the asthma. They constantly record my oxygen, HR, and BP throughout the workout. It lasts from an hour and fifteen minutes to an hour and a half so far and is three times a week. I am going to try to do the treadmill on the two days in between. I absolutely LOVE swimming and have tried that several times. The problem with that is our pool. Neither the hospital or the pool is very far away, I could walk to either. But the pool was put in in haste and the cost of running the thing wasn't considered when they bought it. I tried for three different years buying yearly pool passes. It's in the school, so during school time I couldn't go due to the hours of operation. Then during the summers I would try to go when there were as few people as possible because I don't want to be kicked and splashed and they would KICK ME OUT saying there weren't enough people to keep it open! ARGHHH!!! THEN, the YMCA took over the pool for a year and when I went, I had trouble getting into the water EVERY time. I thought it felt unusually cold, but thought it was just me. It cause muscle spasm in my back that made it hard to swim until I warmed up. Then I found out that they DID lower the pool temperature to save money. I haven't tried swimming since. :-(

Also, I've never hurt myself exercising, ever. It just seems that I "feel" better but am still just as vulnerable to flare-ups when I'm fit, which probably really isn't true. But I've had some really nasty flare-ups that took me from fit to where I am now. Its really sad to see myself so out of shape, especially since I used to be so fit. I remember riding my bike everywhere so effortlessly, walking endlessly stopping only at my destination, hiking, swimming and doing all the stuff I like. I never could run. It ALWAYS hurt and then I couldn't breathe. But that's okay, I don't need to run except to catch my grandson! HA!

I just want to feel better, get some muscle mass built up, and have more stamina. Hopefully I will also be able to reduce the amount of medication I have to take. I'm resigned to the fact that I will be swallowing stupid pills for the rest of my life, but I'd sure like to reduce it, especially the pain meds. One doc told me that he was totally fine with my pain med intake. My ob/gyn said she was fine with me getting preggo on the meds I take, but I would feel really bad if I did. I was one who wouldn't take anything but a very occaisional tylenol if I was preggo. So that lurks in the back of my mind, the what if...?

Thanks for listening,
Rohrer01

lizmar
07-31-2013, 08:24 PM
I am now going to the pain clinic at Stanmore Orthopaedic Hospital and would recommend it. I am also on pain patches 35mg, increased recently and also sometimes need nurofen and paracetomol for pain. My rod was removed about 15 years ago after being in about 20 years, it became infected.

I am also having a very sore rib hump and have just bought a memory foam cushion, am waiting to see an occupational therapist about what to do with my hump to make me more comfortable especially when travelling.

I now use oxygen due to my compressed chest which probably doesn't help my back pain although I do have a trolley.

Any ideas for pain would be appreciated.

rohrer01
08-01-2013, 10:03 AM
Welcome to the forum, Liz.
I had to look up those medications you are using and one is ibuprofen (US brand name Advil) and the other is acetaminophen (US brand name Tylenol). Ibuprofen is a good over the counter pain killer, but sometimes isn't enough for those of us with chronic pain. You have to be careful about stomach irritation and ulcers if you take it for a long period of time. While I don't have any active ulcers at this point, my stomach is irritable and painful sometimes from long term use of NSAIDs. I personally find Naproxen Sodium (US brand name Aleve) to work better on pain. Everyone's body chemistry is different. I take Tylenol daily with my oxycodone. They work well together.

May I ask what kind of pain patch you are on? I was on fentanyl 25mcg and upped to 50mcg at my worst. The bad part about pain patches is that the body seems to get used to the constant level of medication in the system and you end up needing to take oral meds anyway. I had to take oral narcotics for the breakthrough pain at both doses. Fentanyl is a STRONG narcotic, too. That's why I was wondering what pain medication is in your patch. Fentanyl is measured in micrograms and not milligrams.

Since I'm not fused, I'm probably not experiencing the same "kind" of pain that you are. I still have a lot of pain, but I do have good days and bad days. You said something about your hump? I'm going to guess that you still have a rib hump. I'm also going to assume, since you had your rod implanted so many years ago that you had a Harrington rod. Is that correct?

There are four groups of things that I do to ease my pain:
1. Exercise. There are some specific exercises that I do that alleviate certain pains. For lower back pain I pretty much step in place with rapid steps or just lifting my heals up. I don't know why this works for me, but it does. I discovered it on my own by playing the Wii Fit Plus on the bicycling "game". With being on oxygen, I would NOT engage in an exercise program without first asking your doctor.
2. Mechanical assistance. Soft memory foam with egg crate foam mattress covers work well for sleep. I also have many pillows, including a body pillow, to prop up certain areas of my body. Having a pillow under my knee when I'm laying on my side keeps my lower back from hurting so much while I sleep. On nights that I'm hurting because of rib hump pain I use pillows to prop up the sore side and keep pressure off of it. I also use a soft memory foam pillow for my head since I have a LOT of neck and upper back pain. If my neck is hurting bad enough, sometimes I wear a soft cervical collar. I also use lots of pillows for traveling long distances by car if I'm not the one driving. If I'm driving, I tough it out and stop once in awhile if the pain gets too bad.
3. Injections. I have a ton of muscle spasms due to the scoliosis itself and also muscle dystonia. I get Botox (botulinum toxin) injections in my neck and shoulders. This paralyzes some offending muscle groups for about three months. In addition to that, I get monthly trigger point injections (without steroid).The injections contain a fast acting and a slow acting anesthetic, so I feel better for about an hour or two just from the anesthetic. The injections themselves break up the muscle spasms and are quite effective for muscle pain. I get up to eight every month. A word of caution: The lidocaine in the injections can make you a bit loopy for a little while but is relatively harmless unless you try to drive. Another type of injection that I get is the steroid injection directly into the lower disc space at L5/S1. I have DDD in that disc and it becomes rather painful. I'm also considering getting an SI joint injection. I haven't tried it, yet, because the exercise had been working. The pain is now back due to the fact that I haven't been exercising as much. I have a little heart trouble that has been bothering me lately and had to take two doses of sublingual nitro after the last time I exercised. So I'm a little afraid to do it right now. You have to be careful with steroid injections. They can cause your body's natural steroids to crash. This happened to one member on here. Thankfully she recovered from it!
4. Medication. I take daily narcotics (oxycodone) plus Acetaminophen and sometimes Naproxen Sodium. Oddly enough, I also take Diphenhydramine (US brand name Benadryl) along with the pain medicine. It seems to help. But I also have allergies and it keeps them at bay. If I sneeze too much it makes my back hurt. I also take Baclofen and Klonopin (clonazepam) for muscle spasms.

Overall, my pain is kept under control pretty well. Of course I'm not going to say I never hurt. I hurt every day. But I can still do most things that I want to. I do go to a pain clinic as well, but my general practitioner does all of the prescribing. That way it's done all from one place which I feel is safer.

I hope this was helpful. It's my own experience, so I don't know how much will apply to you. But I've found that several of us have had and do a lot of the same things to manage pain. I wish you all the best.

AMom
08-03-2013, 10:37 PM
... The recumbant bike hurt my lower back. It seems these days that lying and sitting hurt worse than standing and walking. Although, if I stand for too long it hurts pretty bad, too. Keeping myself moving is the best thing. I would like to do that as much as possible, but I'm so tired all of the time and am in terrible shape for me....
Rohrer01

Hi Rohrer01,

I saw you mentioned a recumbent bike and thought I’d share our experience. My daughter always wanted to join us on family bike rides, but then rode incredibly slow and didn’t seem to enjoy herself. She never complained of pain and I was careful to make sure the bike fit her, but it got to the point where she didn’t want to ride at all. Then I saw an ad for an Electra Townie. It looks like a beach cruiser, but the pedals are shifted forward almost 5 inches, which changes the back-to-foot and back-to-arms angles. We took it out for a test ride and she smiled the entire time. She has been using it for a couple of years and still loves her bike. We don’t take extended rides like my husband and younger daughter, but we like to go out a couple times a week for 20-40 minutes—just around the neighborhood.

Here is a description of the differences:
http://www.electrabike.com/Bikes/townie-bikes-electra

Here is a youtube video that talks about the seat, handlebar & brake adjustments that are made when you buy the bike. It is kind of hokey, but it gets the info across You can make these changes yourself if you bought a used one.
http://www.youtube.com/watch?v=JmuNXdnkyjM

I did a quick look and found used ones for half the price of new ones. But be careful, the first site I pulled up did not have the pedals shifted forward. Also, I’ve ridden a Townie with the white basket as shown 6 bike images down on this site—if you are having problems with your back do not use a heavy basket!!! You will be sore is a very short time.
http://for-sale.yakaz.com/used-townie-bike

BTW, I liked her bike so much, I broke down and bought one for myself.

A Mom

rohrer01
08-04-2013, 07:09 AM
Thanks, Amom!

I actually don't have any problems riding a regular bike. The recumbent bike I was talking about was a stationary bike at the gym. Sitting upright seems to be the most comfortable for me, even when traveling. I always though it would be kind of cool to have one of those bikes you describe, though. =)

susancook
08-04-2013, 02:03 PM
Like Linda said, everyone is different. I was never on higher doses of Fentanyl, so I just stopped abruptly one day. I actually think that I could have stopped postop Fentanyl and Dilaudid sooner than I did, but I had a big box of Fentanyl and a bottle of Dilaudid and figured that I should take them because the pain management MD gave them to me postop. I was not in pain on them.....and when I stopped them, found out that I wasn't in pain either. This was about 2 to 2.5 months postop, so early on. Maybe I just captured the sweet spot!.....probably just lucky.
Susan

loves to skate
08-04-2013, 05:02 PM
Hi Rohrer01,

I saw you mentioned a recumbent bike and thought I’d share our experience. My daughter always wanted to join us on family bike rides, but then rode incredibly slow and didn’t seem to enjoy herself. She never complained of pain and I was careful to make sure the bike fit her, but it got to the point where she didn’t want to ride at all. Then I saw an ad for an Electra Townie. It looks like a beach cruiser, but the pedals are shifted forward almost 5 inches, which changes the back-to-foot and back-to-arms angles. We took it out for a test ride and she smiled the entire time. She has been using it for a couple of years and still loves her bike. We don’t take extended rides like my husband and younger daughter, but we like to go out a couple times a week for 20-40 minutes—just around the neighborhood.

Here is a description of the differences:
http://www.electrabike.com/Bikes/townie-bikes-electra

Here is a youtube video that talks about the seat, handlebar & brake adjustments that are made when you buy the bike. It is kind of hokey, but it gets the info across You can make these changes yourself if you bought a used one.
http://www.youtube.com/watch?v=JmuNXdnkyjM

I did a quick look and found used ones for half the price of new ones. But be careful, the first site I pulled up did not have the pedals shifted forward. Also, I’ve ridden a Townie with the white basket as shown 6 bike images down on this site—if you are having problems with your back do not use a heavy basket!!! You will be sore is a very short time.
http://for-sale.yakaz.com/used-townie-bike

BTW, I liked her bike so much, I broke down and bought one for myself.

A Mom

When I asked my spine Doctor if I could go back to riding a bike, he recommended a Townie for me. I love it and can't wait until my hip heals enough for me to go back to riding it. I have had mine for almost three years now. When you ride sitting upright, you use back muscles which help to strengthen your back, whereas a truly recumbent bike, all you are using are your leg muscles.
Sally

jrnyc
08-06-2013, 10:34 AM
article in NY Times today...Health section...
about how doctors "overtreat" back pain...
i laughed...i know they are not talking about scoliosis patients...
but i bet you anything the person who researched the article
never had a herniated disc or any other severe back problem!
back problems HURT...period!

jess...and Sparky(who knows more than many humans, it seems!)

susancook
08-06-2013, 11:56 AM
When I asked my spine Doctor if I could go back to riding a bike, he recommended a Townie for me. I love it and can't wait until my hip heals enough for me to go back to riding it. I have had mine for almost three years now. When you ride sitting upright, you use back muscles which help to strengthen your back, whereas a truly recumbent bike, all you are using are your leg muscles.
Sally

What's a Townie?
Susan.....used to ride bicycles

susancook
08-06-2013, 12:03 PM
article in NY Times today...Health section...
about how doctors "overtreat" back pain...
i laughed...i know they are not talking about scoliosis patients...
but i bet you anything the person who researched the article
never had a herniated disc or any other severe back problem!
back problems HURT...period!

jess...and Sparky(who knows more than many humans, it seems!)

I did not read the article, so I will try to find a NY Times. It is well known in the medical community that the vast majority of people with back pain just have a muscle strain that would heal without PT and medications. Initial rest and cold packs is the treatment of choice, and if you feel compelled, non-steroidal anti-inflammatories. I do not believe that they are talking about herniated discs, but those back aches that are better within a week or two whether you do anything or not as they are just back muscle strains.
Susan

jrnyc
08-06-2013, 01:01 PM
New York Times is online...you can read 5 articles for free, i think, before they require you subscribe to the newspaper...

i think back problems worsen with age...i know people who had minor back injuries when young, in their teens or twenties...some have pain come back to haunt them in later years, after they have NOT re-injured their back...
i think spines are more complicated than doctors understand...
i do not trust anyone who minimizes pain, anyway...and i do not care if they have an M.D. on their wall.
i am someone who had a TOP famous surgeon at Sloan Kettering tell me the benign tumor in left femur could NOT be bothering me...because it "isn't supposed to hurt"
i got up and walked out.
he was an idiot...great surgeon or not...
(the pain was the only reason i had the femur X rayed and investigated...otherwise, i
would not have found out i had a tumor there)

so i guess i am a little prejudiced on the subject...and subjectivity...of pain.
(i was also told i didnt need pain meds for Lyme disease symptoms, because
"Lyme doesn't hurt that much" from another genius M.D. at Stonybrook Hospital)
doctors need to listen to their patients when the patient differs from the text book!!

jess

rohrer01
08-06-2013, 07:58 PM
Hmmm...
Sounds a LOT like some "genius" MD's telling me scoliosis doesn't hurt. I was diagnosed with it BECAUSE I was in so much pain at 16 years old that I was incapacitated and went in for an x-ray! Duh... The pain was right where the scoliosis is.

jrnyc
08-06-2013, 09:03 PM
hey rohr...
yup, definitely sounds like another one of those "genius" types of
doctors....they are so busy justifying their text book learning, i think
they forget to give the patient any credit for knowing their own bodies...
bad enough when they pull that with kids...to do it to adults is to treat
patients like idiots...
i now have a wonderful orthopedic oncologist who told me that...
when Stonybrook told me i "must have broken your left femur and didn't
know it" from an X ray they took...that they were making a fairly common
mistake, confusing the enchondroma i had...and still have... in my left femur with a healed over broken bone....you should have heard the doctor at Stonybrook arguing with me that i "MUST HAVE broken the bone" and not known it...same female doctor who told me i should not need pain
meds because "Lyme doesn't hurt that much"...as i said...genius!

thank goodness for the doctors who DO listen to their patients...
sometimes seems those doctors are all too rare.

jess...and Sparky

susancook
08-06-2013, 10:07 PM
New York Times is online...you can read 5 articles for free, i think, before they require you subscribe to the newspaper...

i think back problems worsen with age...i know people who had minor back injuries when young, in their teens or twenties...some have pain come back to haunt them in later years, after they have NOT re-injured their back...
i think spines are more complicated than doctors understand...
i do not trust anyone who minimizes pain, anyway...and i do not care if they have an M.D. on their wall.
i am someone who had a TOP famous surgeon at Sloan Kettering tell me the benign tumor in left femur could NOT be bothering me...because it "isn't supposed to hurt"
i got up and walked out.
he was an idiot...great surgeon or not...
(the pain was the only reason i had the femur X rayed and investigated...otherwise, i
would not have found out i had a tumor there)

so i guess i am a little prejudiced on the subject...and subjectivity...of pain.
(i was also told i didnt need pain meds for Lyme disease symptoms, because
"Lyme doesn't hurt that much" from another genius M.D. at Stonybrook Hospital)
doctors need to listen to their patients when the patient differs from the text book!!

jess

Not trying to step on your nerve or tell you that your pain is not real. Clinicians that do not believe patients should get out of clinical medicine and work and in a pathology lab. Sounds like you had a really bad experience. Sorry.

In the 60's when I was in college, I went to the health service for meds for severe menstrual cramps. The MD told me that the reason that I had menstrual cramps was because I "didn't like sex". I told him that I was a virgin and hadn't tried sex yet, but as soon as I did, I would let him know if it was fun or not. He did not know what to do with my answer.
Susan

jrnyc
08-06-2013, 10:57 PM
thanks for the sympathetic understanding...
sounds like you met a few "geniuses" as well...what an idiotic and creepy
doctor to be working on a college campus!! and what a quick witted
reply!

my own negative experiences were a long time ago...
unfortunately, the experience we went thru when my mother was sick
with a brain tumor did not improve my opinion of doctors...
i seem to have met some of the worst...and then occasionally, one or
two i considered the best.

i would not wish those worst doctors on my worst enemy!

jess

rohrer01
08-07-2013, 01:35 AM
Not trying to step on your nerve or tell you that your pain is not real. Clinicians that do not believe patients should get out of clinical medicine and work and in a pathology lab. Sounds like you had a really bad experience. Sorry.

In the 60's when I was in college, I went to the health service for meds for severe menstrual cramps. The MD told me that the reason that I had menstrual cramps was because I "didn't like sex". I told him that I was a virgin and hadn't tried sex yet, but as soon as I did, I would let him know if it was fun or not. He did not know what to do with my answer.
Susan

What a creepy pervert! It's too bad you couldn't have reported him. I guess we've all had our "winners".

mabeckoff
08-07-2013, 10:39 AM
What a creepy pervert! It's too bad you couldn't have reported him. I guess we've all had our "winners".

Times were different then. Today he would have been reported

Melissa

rohrer01
08-07-2013, 03:31 PM
Thank you for your well wishes, Melissa.
Yes, times are different. But not all unethical medical actions get reported, even today. You've got three kinds of people. 1. Normal people who report appropriately. 2. Sue happy people that try to get rich off of an honest mistake. and 3. People who don't say anything at all due to feeling intimidated by a person of "higher station", or fear of repercussions.

I think we've all met our share of wacky doctors. :-/

loves to skate
08-07-2013, 03:57 PM
In the 60's when I was in college, I went to the health service for meds for severe menstrual cramps. The MD told me that the reason that I had menstrual cramps was because I "didn't like sex". I told him that I was a virgin and hadn't tried sex yet, but as soon as I did, I would let him know if it was fun or not. He did not know what to do with my answer.
Susan

Susan, I love your answer to the idiot Doctor. I hope this guy wasn't a gynecologist. I had severe menstrual cramps until I gave birth at age 30.

A Townie is a brand of bicycles. It sits you in an upright position so you are not putting any strain on your back or neck. Google it so you can see one. Find a dealer and try one out. I always hated my racing bike that my husband insisted on buying when we were in our late 30's.

Sally

susancook
08-08-2013, 10:26 AM
Re: MD at health center at University of Texas: back in the 1960s the medical community did not know about prostaglandins and dysmenorrhea. There was a contingency of MDs who genuinely thought that cramps were caused by psychological problems.

Sally: thanks for the information. Right now, I am afraid of falling until I am fused. Maybe then, I will look into a Townie. I'll try a stationary bike in the gym.

Susan

loves to skate
08-08-2013, 10:51 AM
Susan, I wasn't allowed to ride a bike until I was fused either. Now I am waiting for my right leg to get strong enough to get back to bike riding. At the gym, make sure you are sitting upright on a stationary bike. Don't use the recumbent bike.
Sally

susancook
08-08-2013, 11:53 AM
Re: MD at health center at University of Texas: back in the 1960s the medical community did not know about prostaglandins and dysmenorrhea. There was a contingency of MDs who genuinely thought that cramps were caused by psychological problems. That was also a time when most MDs were men.

Sally: thanks for the information. Right now, I am afraid of falling until I am fused. Maybe then, I will look into a Townie. I'll try a stationary bike in the gym. I will sit up straight....Thanks for the info. My right leg is also weak postop, Dr. Hu repaired a stenotic right L4 which is great now, but left my R leg weak.

Susan

lizmar
11-21-2013, 03:09 PM
I was interested a while ago to see that a member takes klonopin for pain. I am on pain patches and have to take nurofen and paracetmol as required too. I think its awful when Drs think you have a drug problem, I sometimes have to take a lot of painkillers especialy if I overdo things. I do wonder if the pain management clinic at Stanmore is covering up for a specialist there who wouldn't do any more surgery a few years ago. He removed the rod about 15 years ago as it was infected but has never replaced it with anything, he said it wasn't worth the risk, I use oxygen and have a ventilator. My partner went to see him a while later and he first told him that he could perform surgery then when he realised he was my partner said he couldn't as it wouldn't be worth the risk either, he had a harrington rod fitted about 30 years ago there, he isn't in as much pain as I am, he does use a ventilator at night. I only had an MRI scan with the pain clinic. I don't think Drs realise how much pain can reduce the quality of life, I'm stil quite cross that I am now using oxygen due to lung capacity, I was told my back wouldn't get worse if the rodwas removed and my breathing would get worse with another operation, how can oxygen be any worse!!!

I look forward to your comments.

rohrer01
11-22-2013, 10:59 AM
Lizmar,
While I'm not familiar with the brand names of the meds from the UK, I know that some of them are the same thing as over here in the USA but called something different. I take Klonopin for muscle spasm. That's how it helps pain. It's not a pain medication.

It sounds to me like you need to find a different doctor, especially when he won't help your partner because he's with you! Honestly, for us "lifers", the decision should be up to us whether or not we shorten our life span due to pain meds. We should be able to choose quality over quantity. Honestly, for me I'd rather live a quality life that is shorter than a long miserable life. I don't really understand all the hoopla about worrying about addiction in a life time pain patient. Who cares? Now, I do understand the worry IF a person truly is NOT in pain and just wants the drugs. There's a whole different world between the two kinds of people. I do know someone who is a lifer but also has AODA (alcohol and other drug addictions). These people are the toughest to treat because they have real pain but also want to get high.

I used to be on pain patches. I've had a few instances of being on them for a year or two at a time. I really don't like them because they seem to lower my pain tolerance and I end up taking the oral meds anyway. Coming off of those patches is a real bear, too!!! The skin burns all over like a huge sun burn, along with cold sweats and diarrhea and severe muscle pain for me. It's just awful, so I try to avoid them if I can. I hope they are helping you.

Your lung capacity could be why you can't have more surgery. I'm not going to be dogmatic about that since I'm not a doctor. My doctor told me that lung capacity actually decreases with scoliosis surgery. If you are already on oxygen it just might worsen things. By ventilator, I'm assuming that you have some sort of pressure assist breathing device. A ventilator over here is a machine that actually breathes for you and you have a tube inserted down your throat or through a stoma in your neck. I certainly hope that's not the case with you. You might try talking to a doctor about the breathing issues with another surgery.

I certainly wish you all the best.
Take Care