pain control 1.5 years after GBS

[virginiaRN 60]

Hi Folks. Question that you all may or may not have run into. I had roux-en-y GBS 1.5 years ago. Lost almost 100 pounds. That is going well. I have some chronic back issues (degenerative disc dz in lumbar and cervical region) and have done all the injections, radiofrequency ablations, epidural blocks, etc., that I can manage. Pain persists, but ortho has stated it is not appropriate for surgery. To be fair, I wasn't really going around hunting down someone to operate b/c the idea of back surgery is not exactly thrilling to me, having taken care of the post-op back surgery patients in home health and with the back surgery success rate of 50%.

Prior to surgery, I was able to take NSAIDs and certainly took my share. My surgeon stated no way on the NSAIDs. After me badgering him, he allowed me to take Celebrex 100mg twice a day along with Nexium 40mg once a day. I did this for 3 weeks. I ended up with a peptic ulcer which had to be treated for a month with a multiple medication cocktail. It was not fun. The ulcer was way more painful that the neck and back pain I originally had. For a while, I managed on regular or arthritis-strength OTC tylenol. Then, my pain management doctor rx'd Vicodin, which is never a good long term solution. So, I took it, with the knowledge that I shouldn't take this long term. I've dc'd this myself and I am still in pain. Also prohibited by my GBS surgeon are oral steroids (prednisone, prednisolone, etc.)

FWIW, I have unsuccessfully taken Cymbalta, Neurontin, and a few other neuro-type drugs. I take Lexapro for moderate depression. I can't take a number of meds also because of my epilepsy history from the age of 9. Oh, and I maxed out my chiro benefit this year (20 visits.) Out of pocket, chiro is $70/visit and the chiro wants me there twice a week. I have expressed that I really loved his services but I can't afford $140/week. I used to get 90 minute deep tissue massages about every 10 days, but my therapist moved far, far away and I've struggled to find someone even half as good. Currently doing epsom salt baths, Tylenol, and heat and or cool packs. Normally, I'm good but unusual activity types usually throw me over the edge. (This weekend had a house flood which entails me and my family moving lots and lots of things from one area of the house to another.) I've even done acupuncture, but the cost was prohibitive ($900 for 3 treatments.) I even have my own TENS unit and foam rollers. I do some strengthening and stretching exercises on my own, which helps too.

I need to find a better solution for pain management. Anyone find solutions and/or good providers who have a handle on this? I will travel to see someone good. Thanks in advance!

[toodlerue 452]

Wow. You just wrote my pain story! You have tried everything that I would suggest except lidocaine Patches. They are expensive but I can't live without them.

I also wear an neoprene exercise belt around the house when I need heat & ThemoPac when I need heat when I’m not at home. I also take Norco. Some days I take 2 & somedays I don't take any, just depends on the day. So I know I’m not addicted to them.

Best of luck finding out something that works for you!

[virginiaRN 60]

7 minutes ago, toodlerue said:

Wow. You just wrote my pain story! You have tried everything that I would suggest except lidocaine Patches. They are expensive but I can't live without them.

I also wear an neoprene exercise belt around the house when I need heat & ThemoPac when I need heat when I’m not at home. I also take Norco. Some days I take 2 & somedays I don't take any, just depends on the day. So I know I’m not addicted to them.

Best of luck finding out something that works for you!

Yes! I have Lidocaine Patches. I've tried so many things, it just slipped my mind. They are okay. Not the best, but better than nothing! Thanks.

[Born in Missouri 1,264]

I tried EVERYTHING before finally settling on opioids. My daughter is a PharmD and two of my three sons are medical doctors. Anyone who tries to treat me as an attention-seeking, drug-seeking hypochondriac... WATCH OUT! My pain is my pain. 360mg morphine daily with oxycodone 10mg for breakthru. The CDC has made it hell for many chronic pain patients because of the opioid-crisis hysteria.

https://twitter.com/ThomasKlineMD

http://dontpunishpainrally.com

[2Bsmaller18 436]

Have you looked into going to physical therapy? There are other modalities like ultrasound as well as exercises and stretches that could help. I would recommend having an eval done by a PT and see if you can get some relief. The PT could also give you some advise for body mechanics, posture etc. to prevent further issues.

[LaraK 8]

Hi, I have a similar history of lower back pain and have recently had 2 major knee operations for injuries. So I’ve been on a lot of pain meds over the last 6 months and just had a facet joint block L4/L5. So I can relate and sympathise with your pain. I’m not so familiar with your meds as I’m in the Southern Hemisphere and we have slightly different names here. But what I’ve found that seems to work for my lower back pain is a combination of paracetamol and a muscle relaxant.( Besides the heat/cold etc). Both are non addictive and ok for the tummy. But discuss with your dr first. I may take something with it to protect my stomach, if I’m worried. (here it’s called nectizole/nexium/altosec). I also try and not overdo things, which is easier said than done and I use breathing meditations for pain relief. There are some wonderful apps that you can download. Try Insight Timer. Has such a huge variety of meditations for different ailments. I’ve also been doing hydrotherapy for my knee rehab. The Water is nice for my back too, but you have to be careful not to overdo it. The water is deceptive. I believe that the the bottom line is self kindness and self love and listening to your body. Again easier said than done...when you are in agony. Good luck.

[virginiaRN 60]

5 hours ago, Missouri-Lee's Summit said:

I tried EVERYTHING before finally settling on opioids. My daughter is a PharmD and two of my three sons are medical doctors. Anyone who tries to treat me as an attention-seeking, drug-seeking hypochondriac... WATCH OUT! My pain is my pain. 360mg morphine daily with oxycodone 10mg for breakthru. The CDC has made it hell for many chronic pain patients because of the opioid-crisis hysteria.

https://twitter.com/ThomasKlineMD

Indeed. I actually just wrote a paper on this for my master's program. So much misinformation out there about opioids. Thanks for your response.

http://dontpunishpainrally.com

[virginiaRN 60]

1 hour ago, LaraK said:

Hi, I have a similar history of lower back pain and have recently had 2 major knee operations for injuries. So I’ve been on a lot of pain meds over the last 6 months and just had a facet joint block L4/L5. So I can relate and sympathise with your pain. I’m not so familiar with your meds as I’m in the Southern Hemisphere and we have slightly different names here. But what I’ve found that seems to work for my lower back pain is a combination of paracetamol and a muscle relaxant.( Besides the heat/cold etc). Both are non addictive and ok for the tummy. But discuss with your dr first. I may take something with it to protect my stomach, if I’m worried. (here it’s called nectizole/nexium/altosec). I also try and not overdo things, which is easier said than done and I use breathing meditations for pain relief. There are some wonderful apps that you can download. Try Insight Timer. Has such a huge variety of meditations for different ailments. I’ve also been doing hydrotherapy for my knee rehab. The Water is nice for my back too, but you have to be careful not to overdo it. The Water is deceptive. I believe that the the bottom line is self kindness and self love and listening to your body. Again easier said than done...when you are in agony. Good luck.

I did fail to mention the barrage of muscle relaxants that I have tried. They do help. And tylenol (paracetamol, same drug, different name). I've not familiar with the triple med you mentioned, although I was on celebrex (a COX-2 inhibitor, similar to NSAID, but less ulcer risk) with nexium--and that's when I got the peptic ulcer.

I love water exercise. I should get back to that! Thanks.

[virginiaRN 60]

5 hours ago, 2Bsmaller18 said:

Have you looked into going to physical therapy? There are other modalities like ultrasound as well as exercises and stretches that could help. I would recommend having an eval done by a PT and see if you can get some relief. The PT could also give you some advise for body mechanics, posture etc. to prevent further issues.

I love PT. I failed to mention that in my OP. Yes, I have been in PT for my neck or low back over a dozen times in the last 10 years. Dry needling is amazing too. I'm going to a special PT who does dry needling on Friday. I really hope my insurance covers! It was literally a godsend, but I maxed out my PT visits in previous years. I don't think I have this year. Thanks.

[FluffyChix 17,415]

Ok, so sorry you are going through this and have to live with it. The worst thing in my opinion is always being on a level of pain where you can't sleep, move, etc.

But here's where I probably won't be popular, and I can only give you my story. And everyone is SO different and lives a different pain history.

In short, I have osteoarthritis, degenerative disc disease, cervical stenosis and sacral stenosis, bone spurs on my spine, hips, joints. etc, etc, chronic bursitis in both hips, a 50% ACL tear, and neuralgia 360 around my chest extending 8 inches + neuralgia in my hands/feet from hand/foot syndrome during chemo. And in addition I'm a stage 3c BC survivor on Femara (a drug that causes even more bone and joint pain). I've been on opiod pills, neurontin, tramadol, flexeril, nsaids, tylenol, pain Patches, pain gels, cortisone shots to the joints. Oh and now I have a Parkinsonian trimmer in my head and hands from the radiation/chemo--so it causes constant muscle tension cuz I trie to keep my head/hands/shoulders from shaking deep inside my body.

I used to not be able to sleep longer than 1-2 hours at a time before waking from pain and unintentional movement. I still sleep in a recliner. And every day I woke, I'd wake in at least a 6-7 pain level. I would not medicate until it was an 8+ to 10 cuz I hated the side effects of the drugs. And now that I had surgery, most of that or a lot of that is off the table.

Here is what finally helped me.

1. Adjusting my diet to be as clean as possible. (Every time I eat beef or pork, I wake the next morning 20 years older... Every time I have carby carbs like grains--pain so bad I feel 80 years old. Every time I drink any kind of alcohol other than a little red wine--pain like cray. cheese and dairy is the same way unless it's very very small amounts of reduced fat or fat free dairy.)

2. Started doing severe calorie restriction, then IF and that reduced the pain ENORMOUSLY! Like...magically.

3. Lose weight. I think my doc gave me some number like: for every 15% of body weight you lose, you reduce your pain level by 20-30%?

4. Get PT and then do the frickin core strengthening exercises religiously. (I'm slacking on this! But I can tell when I do them and when I don't. The difference in pain level is a magnitude of 10 with v. without.)

5. Walk daily. Daily. Even when I don't feel like it. Even when it hurts. By the time I'm done, it always hurts less.

The best thing I've done is lose the weight. I can do things now without pain meds that I never thought I could or would be able to do. My goal is to get to 125-130lbs to take off as much extra stress as possible and improve my pain level as much as I can. I think the pain meds caused a continual cycle of spring-back pain (forget the name of it). So it was like a self-fulfilling prophecy. Because I medicated, I would have more pain at the end of the cycle and need to take more meds. And because I medicated, I'd built up a tolerance and needed more and more meds to help. Now if I absolutely must have one, it takes maybe 1/4 of the amount it used to take. I now wake only in a 2-3 and end of day is usually only a 4 which is entirely manageable for me.

Some meds that play well together and amplify their effects:

1. Gabapentin + Tramadol together

2. Tramadol + Tylenol together (this one is especially good)

3. Norco 10/325 + Flexoril (last resort med)

Lastly, this is the killer part. (Sorry in advance...and you can only do what you can do--and only you know how clean your diet is and if you are eating low cals.) If you are 5'5" and 178lbs and female, you still have some fluffy slush to get rid of that absolutely would help reduce the pain level. I wouldn't say that if I didn't feel the difference in myself. It was night and day relief.

I'm no longer on any pain drugs. And the only scripts I take are my Femara, thyroid, and omeprazole. I walk daily. I try to do strength training 2-3 days per week as much as I'm able. And I can actually "fast walk"/jog which I never thought possible. It's now been 1+ year since one of my cortisone shots and about 6+months since the other and I'm holding up really well.

I hope my story helps you. I'm sorry for going on about myself. But I just think, if it was possible for me, how many others would/could benefit from it. The freedom from drugs is really just a great gift of this surgery and lifestyle.

Edited November 28, 2018 by FluffyChix

[ElectricBoogaloo 337]

Wow, @FluffyChix ...that third paragraph...yikes! I am so glad you are on the mend! Thanks for putting it out there. I am sure you have helped many, especially lurkers who suffer from chronic pain.

[FluffyChix 17,415]

^^^Jazz Hands^^^

[mylighthouse 782]

Hello,

I'm sorry that you're dealing with chronic pain. People have responded to your post with some good information... it's always good to hear other people's experiences.... especially when you are in a position like yours. When you are dealing with long-term chronic pain, it can be depressing... you get to where you feel like NO ONE understands what you are going through. A lot of people do not understand, because they haven't had to deal with chronic pain before. Speaking from my own personal experience, it is easy after years of chronic pain to feel hopeless because you have tried so many medications, etc, etc, and nothing helps. Not to mention all of the side effects that may occur from taking these medications, drug interactions, etc etc.

My story.... I'll keep it short (haha... I'll try). Had a colon resection in 2015 that kept me in the hospital for 2 months! It was my first "open" abdominal surgery. Over the last 6 years, I have had 7 abdominal surgeries, 3 "open". I have terrible scar tissue/abdominal pain. I know my surgeon cut away some adhesions when he repaired my incisional hernia. Several months after my colon resection, my surgeon told me that I may need to stay on Tramdol the rest of my life. Here I am 4 years later and I'm still taking 300 mg of Tramadol a day.

My current med combo for pain only is Tramadol, ES Tylenol and Gabapentin. The Gabapentin worked for awhile, but one time when I was in the hospital a few months ago, they thought I had a bad reaction to it. It turned out that my sodium level had just dropped like crazy and it was causing probs. So I temporarily weaned off Gabapentin before they pinpointed low sodium being the problem. Now I am back up to 1800 mg of Gabapentin a day, and it does not help much. When I saw my surgeon yesterday, he said to talk to my GP about increasing the Gabapentin or trying something else, like Lyrica.

Ideally, I would love to be med free as far as pain meds go. I spend most of my time in bed. Exercise makes my pain worse. Fluffy had some really good insight.... I think exercise is great, but I guess in some chronic pain cases, it may actually make pain worse. I definitely think you need to give exercise a shot and see if it helps. I also can attest to the fact that carrying around extra weight can make pain worse.

I also use some salves/rubs for my scar tissue/nerve pain in my abdomen. They help ease pain temporarily. The other thing that I've been trying for 3 months now is CBD (no THC). I take a CBD tincture under my tongue twice a day. I also have a CBD vape. You see what I'm saying? When you are dealing with chronic pain, you are willing to try different things... I'm not gonna lie, sometimes I feel desperate. BUT, it can be dangerous too.... there are things out there that may be "natural" products, herbal supplements, etc, that can be harmful. I try to research things before I buy them.

I hope that you can find something that will help you get through the pain issue. In the meantime, remember that you're not alone, as you can see from the response of others here. It is nice to know that others can understand or somewhat understand what you're going through, isn't it? Afterall, we are human and knowing that others can identify in some way with us actually helps "lift" our spirits a bit. At least I know it's helped me. Good luck and keep your chin up!

Edited November 28, 2018 by mylighthouse

[marly18 23]

I have similar pain issues as the rest here. I am 4 weeks post op and have to say my back pain has decreased a great deal and I can only attribute it to the elimination of inflammatory foods as fluffychix has mentioned. My pain mngmt dr always told me to eliminate all white foods. When I start eating more it will be interesting to see if I can identify any specific trigger foods.

[virginiaRN 60]

On 11/27/2018 at 9:17 PM, 2Bsmaller18 said:

Have you looked into going to physical therapy? There are other modalities like ultrasound as well as exercises and stretches that could help. I would recommend having an eval done by a PT and see if you can get some relief. The PT could also give you some advise for body mechanics, posture etc. to prevent further issues.

Can't remember if I replied. Yes I looove PT. I have gone to about >20 full cycles of PT as an adult. And I'm 45. LOL So that tells you how much I have gone to PT. Specifically, I have been helped by dry needling. I'm actually going to a PT (who does dry needling) today, to see if I can get any relief. I think I have some benes left this year, but may have to pay out of pocket if not. It's worth it.