Long term pain management - HELP

[rohrer01]

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...

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.

[mbeckoff]

Where is DR Hey located and where do you live?

Melissa

[rohrer01]

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.

[rohrer01]

Dr. Hey is in North Carolina and I am in the Midwest.

[rohrer01]

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]

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]

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]

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! )

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]

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! 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...

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]

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/...in-relief.html

[rohrer01]

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.

[Back-out]

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.

HAHA. (hollow laugh) I've heard NSAIDs can interfere with memory, BTW. Oops, told you that, I think. 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]

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"

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]

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! 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]

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.