Long term pain management - HELP

[rohrer01]

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! 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.

[mbeckoff]

That is great to donate it to locks of love.What a great thing to do

Melissa

[rohrer01]

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]

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]

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]

I hope that it works out for you.

[loves to skate]

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]

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]

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]

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]

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]

Injections for back pain

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]

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]

... 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]

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. =)