more pain, more meds, more nerve damage
AnonymousApril 2, 2009 at 10:35 pm
I had to go see my pain doctor this week as the burning pain in my feet has gotten worse. He recommended increasing my oxycontin which has helped and told me a) after four years I am probably not going to improve and b) he thought the increased symptoms meant I was actually getting worse-having more nerve damage. He thought there were two reasons for my pain getting worse now-that I might have peripherial neuropathy in addition to residuals, though this is doesn’t mean much, or that years of pain have injured my body further. He told me something I did not think about before, that having chronic pain hurts the body over time. Even if we tell ourselves we can take the pain, our bodies have trouble doing so, and so the nerve damage gets aggravated and can worsen. It is a residual I hadn’t considered before-not only having the pain but the damage it is causing our weakened nerves. I also wondered about those who have talked about a post gbs syndrome, though I have not experienced more weakness yet, only more pain. I am at the maximum dose of neurontin and can’t increase that, so we are trying to raise the oxycontin for now. It has finally started to work today.
It was not a happy meeting, as he told me I could worsen again tomorrow, or maybe in six months, but he thought it would likely continue to worsen. I appreciated his honesty as I had my fill of doctors tellimg me I would be fine, and I know he could be wrong, but I know I have been getting worse. He also told me that this is a very difficult condition to treat.
Hope you are all doing well. Jeff
AnonymousApril 10, 2009 at 8:11 am
I am so sorry to hear of you having more pain. I know for sure that it does reck havic on the whole body…a really big shock to all the body. I mean from the head to the toes. I improved somewhat up to about 10 years, and then it started getting worse really quick again. I do think age has something to do with it too Jeff; as we age the body naturally gets slower and weaker, without any illness contributing to the process. Jeff, what is the difference between residuals and peripherial neuropathy and when does it go from being a residual to neuropathy ? I would really like a answer to this Jeff; as I have thought about it quite alot. I am not trying to hijack your thread Jeff, but if I don’t get a answer here I will then post a thread. My best to you my good friend.
AnonymousApril 10, 2009 at 8:29 am
Hi Drummer: I am not sure of the answer to your question, but the impression that I got was the doctor was saying any increase of damage to the nerves would indicate peripheral neuropathy as distinct from a residual which results from nerves already damaged. With residuals there is no more damage to the nerves but if for some reason, nerves are more damaged it could be a form of peripheral neuropathy. Unlike CIDP there is not the continuous attack on the nerve that can cause paralysis, but some other cause weakening the nerves. The reason in my post I said it didn’t really matter is that the treatment for a residual or for neuropathy is the same. He was trying to figure out why the nerve damage seemed to be worsening causing increased pain and so thought it could be neuropathy. Maybe someone with a medical background can answer this better. Drummer-are you experiencing worsening pain? Is it the burning pain? Since I posted the increased oxycontin has helped a lot eliminating maybe 90% of the pain. Jeff
AnonymousApril 10, 2009 at 12:19 pm
does this doctor know there are things getting worse w/o testing?
If it were me? I’d get copies of all my med tests and blood, etc reports and go and get another opinon. But then, I live in a big metro area w/lots of access to major medical teaching facilities and research hospitals. I didn’t have to go that far tho – I was lucky, only went to one, and got testing and diagnosis within four months. [Setting up tests locally and actually getting them was the time issue]
So, you could get another opinion w/test orders from another neuro and get them done closer to home and thus get on your way…
It took me just over a year from my gbs/cidp onset to diagnosis and IVIG. That has been my lifesaver! I hope you get the same help and luck that I had! Truly… We shouldn’t need to suffer needlessly if we don’t have to!
AnonymousApril 10, 2009 at 12:44 pm
Peripheral neuropathy is from nerve damage. I have neuropathy in my feet from the nerve damage caused by GBS. I too believe that you need to get another opinion. Oxycontin is a very powerful and addictive drug to be prescribed to someone for such a long period of time. It also takes an ever increasing dose to get relief. Perhaps you should see a pain management specialist.
AnonymousApril 11, 2009 at 7:23 am
Sorry to hear you are still experiencing ongoing issues.. The pain you are enduring is not good either… I’m not a real big fan of pain meds, but know they have their place.. As long as its part of the overall package to keep you stablized I can see it.. I hope they can get to the “root of the problem”, and get you back into remission, real soon…. dean
AnonymousApril 11, 2009 at 11:53 am
Hi Jeff, Think we dx about the same time, you gave me some hints for walking on gravel roads. I found the solution now, power chair…
I was told at Mayo, Rochester in Feb 08 I do not have GBS/CIDP, but episodic polyradiculoneuropathy (whew), which research shows it to be the same as CIDP> I just dont know, but I seem to be in remission and “tuffing” it out without meds. Never thought about the pain doing further damage, may have to look into pain meds, but just dont know what will work, have tried many. So just a further mysterious dx for this awful disease.
Sure hope you get to feeling better. Regina
AnonymousApril 11, 2009 at 8:36 pm
You are one of my favorite people on this site and I hate to hear of your pain. After reading OUR DAILY MEDS, I question the use of Neurontin. “In May 2004 Warner-Lambert pleaded guilty to criminal charges and agreed to pay $430 million dollars to resolve the allegations that it had illegally marketed Neurontin. The money helped repay tax payers for part of what they spent on experimental prescriptions for Neurontin written by doctors for patients in the Medicaid program.” Neurontin was originally okayed by the FDA as a drug for epilepsy (and not a good one) and only for 1800 mg at the most. But drug reps were telling doctors incorrectly that they could go as high as 4800 mg.
Is it possible that high doses of neurontin could be causing some of the damage? I have been blessed that I did not get the burning pain that you described and I wonder what I am doing to have sidestepped this side effect both times I had GBS. I wish they could figure it out so you could do the same. The only differences that I see are that I did not get IVIG or plasmapharesis, have not taken Neurontin, and am on mega doses of supplements but not any pharmaceuticals. Somewhere in there is the answer…..in my humble opinion.
I do wish we could figure this out……I intuitively think the answer is staring us in the face….on this site…if we could just put it all together.
AnonymousApril 11, 2009 at 10:57 pm
Hi Everyone: Thanks for all the responses. Regina-I do remember our previous conversation-seems like a few years since I heard from you and I hope your pain is not too bad. Carolyn: thanks for your nice words. I wonder if there is any one answer to why someone gets pain and someone else does not-plenty of people use neurontin and don’t get painful symptoms, but who knows. I take it to be my fate, though I go looking for answers as well.
I understand the good intent of the postings, but I have made my views on use of narcotic pain meds pretty clear in other threads and won’t repeat anything here. Suffice it to say that I choose not to live in pain, especially when that constant pain is not only exhausting but damaging to the body. I have use neurontin but being at the maximum dose had to try other approaches. As for the comments about second opinions, again thank you, but it was not my intent to ask for medical advice. My doc is a pain doc (physiatrist) who specializes in MS and GBS so he knows what he is talking about. He knows my condition is worse because of what I tell him. More nerve conduction tests were not recommended by either him or my neurologist because they would simply show what we know-I have significant nerve damage. I am fortunate in having a doctor who knows GBS and whom I can really trust.
As for b-12, I found this on the internet and it might be of interest:
“There is a lot of advice on the internet to take vitamin B12 to help burning feet. However, a burning foot occuring with the neuropathy that is associated with a deficiency of vitamin B12 is very uncommon and should be managed by a medical doctor. The taking of B12 for burning feet is not likely to help unless a deficiency is the cause and its is one of the more uncommon causes of the burning foot.”
Sorry for such a long posting. My original posting was to share what I thought was important-constant pain can cause neuropathy over and above residual effects. Finally, I am doing better-two weeks with the pain under control and no side effects. Jeff
AnonymousApril 12, 2009 at 5:36 pm
Been a bit… I hve to thank you for taking the words right out of my mouth, but in your usual style of great communication. I so wish I had a doc like yours. I’m basically without a neuro now and my PCP does what he can. Also, my insurance is now gone since I couldn’t afford Cobra anymore. I am hanging in there physically and mentally (sort of).
I agree with Carolyn saying that we just have to put a few pieces of the puzzle together and there will be a lot more knowledge of our conditions.
Keep up the great thinking and sharing!
AnonymousApril 13, 2009 at 1:42 am
Sorry to just be responding. It sounds like you had pretty disappointing news from the meeting with your doctor but that it basically reaffirmed your experiences of the diseases progression. You are so in touch with your self and are in sync with your health care team so it sounds like you are doing the best you can with what you have. I just wanted to let you know I hear you and am glad you are doing what you have to.
All my best,
AnonymousApril 13, 2009 at 12:54 pm
I am glad the pain is getting better for you. I have had the burning in my hands and it was excruciating. It was literally the worst pain and if I were to have to live with that constantly, I dont know how long I could really live.
My pain was happening at night…waking me up with a feeling that my hands were in a fire or a hot pan of grease. I cannot explain enough for the lack of better words, but it was unbearable. I thank my God that those episodes have passed and I havent had any for several weeks. I was afraid to go to sleep.
I also see a pain mngt dr that is absolutely wonderful. I trust him a whole lot and I know he is really trying to help me. I feel like he reaches out to me on a much more personal level and has other ideas or refers me to other specialists b/c of that. My nuero is pretty straight on the narrow. We do the usual exam, he tells me the same ol stuff and off I go. The pain mgnt dr takes time with me and truly WANTS to help.
It sounds to me like you, too, are on a good repor with your pain dr. I’m so glad you’ve found someone that helps you. If you have the pain in your feet, that I had in my hands…than you need the strongest pain med available and I do understand ! You need what works…whatever and however strong it may be. That kind of pain is just unexplainable and if someone hasnt felt it…especially a Dr, it’s no wonder they try people on everything under the moon before they find the right med especially one that is strong enough ! I’m happy you are having relief.
Stay well friend,
AnonymousApril 13, 2009 at 2:38 pm
I think you did a wonderful job of explaining the difference between neuropathy and residuals. My Drs. could not have done as well. Jeff, yes my pain did increase, and to answer a previous question, as you did Jeff, I could not wait to post the answer and kept on reading the posts and then you anwered before me. 🙂 The reason my Dr. knew things were getting worse was because I told him. I started feeling more numb and more burning than usual and therefore more pain. I too have great pain Drs at one of the best pain facilities and Drs in the country. I too am on the 80mg med 3 times a day along with lyrica and all the other stuff that has came out over the years. I have to say that the oxy does not have to be increased continually as someone posted above. I have been on it ever since they came out with it. I think I would then have to be taking it by the truck loads if that is true. Jeff, I agree, there is no need for us to keep answering the same questions for people who have not evidentally had any SEVERE pain for any length of time. These people could be millionairs if they could treat people for pain without narcotics. Have a good day Jeff.
AnonymousApril 13, 2009 at 6:14 pm
Thanks Linda and Chrissy for your support. I know you both have gone through a lot and I hope your road gets better soon. And Linda, what a great thing to teach the medical world something of CIDP-I hope you continue to teach. Stacey-you got it right! I have no words to describe the pain on the bottom of my feet-on a scale of 1-10 it is a 8 or 9 and once it gets started it doesn’t want to quit. I have it every day but with rest, ointments and meds I mostly stay on top of it. But you are right also that if I had to go through that the rest of my life life would not be worth living. Thanks for your understanding which you have gotten through your own suffering.
Drummer-thanks man. I am glad you too have docs you can trust-with pain management it is important. As Stacey says, the pain doctors usually pay more attention and listen to what we say as opposed to neurologists who are always rushed and ready to tell me my reflexes are good. One neurologist told me it wasn’t his job to deal with residuals and there is nothing you can do anyway. That was a great message and fortunately untrue. Anyways, thanks and my prayers for everyone. Jeff
AnonymousApril 13, 2009 at 6:35 pm
I guess pain is a relative thing… Anyone who has had gbs, and has had severe paralysis (like me), probably knows a little about the pain associated, and the aftermath.. As well as being treated for cidp (like me). I also know, someone who is on a lifelong scrip of oxycontin, the damage pain meds can do in treating the problem.. I think any of you that are being treated for this, know that sometimes the cure can be worse than the disease.. MY POINT IS PAIN PILLS CAN BE ADDICTIVE (for some people), not necessarily you!>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Jeff, good luck on your recovery….. deano
AnonymousApril 15, 2009 at 10:20 pm
Hey there Jeff, I will take the cure for the pain anyday and let others suffer if they so choose, I know some on here haven’t , with the disease. Has anyone ever thought of commiting suicide to ease the pain ? I have thought of letting a train cut my legs off;you could say that was suicide, to stop the pain. Yes, there is a mainline railroad that runs close to my house and the thought came to me as I heard the trains going by the house here. That was before I found a real pain management clinic with some of the best DRs. with several GBS patients.
AnonymousMay 2, 2009 at 1:56 pm
Jeff I also have had pain for the last 3 years since my GBS. My pain management Dr has me on Percocet 10mg and Soma 350mg and a few months ago I had a Nerostimulator installed into my hip and spine. The doctors said that I had Degenerative Spinal Disorder with a bulging disc and 2 discs gone. He also thinks it might have started from having GBS and the weakening of my system. Even with the newest ANS system installed Im still on heavy meds and trying to work. The pain is still there as always and just seems to be getting worse. If anyone has any suggestions I’m free for any help. Like Jeff Pain has become part of our Lives.
AnonymousMay 3, 2009 at 5:49 am
I totally agree with you about choosing to not live in pain. I am like Tim. Every evening at the same time my burning starts in my hands and feet. In fact both arms burn too. And then I lay there in bed fighting myself trying to get some decent d.. sleep! LOL! So now I take tylenol with codiene. Some nights I can handle it while other nights I can’t. It does end up getting you exhausted because you can’t rest in peace with it. I am glad your doctor’s decided to give you something to help and hope this will work for many years. Good luck Jeff! Hugs
May 8, 2009 at 7:18 am
I was reading about this Oxycontin and if you take Lyrica dont work well together. I cant exspain it in english but if you are taken other meds that is working on your central nervous system then you can get more sleepy and more tierd.
May 8, 2009 at 7:24 am
[quote=jeff] Finally, I am doing better-two weeks with the pain under control and no side effects. Jeff[/quote]
It is good to hear, for me this is good news, I have this burning feet all the time and neurotin stil can sooth some of the pain down but not all. every one say to me this will get better, in this two years from I was onset, they only get worse. but Im trying to awoid as much as I can to take more meds at the time. Im now on highest does on neurotin and I hope and pray this will get better. But I hear that there is a way to be with out this pain, and if in next 5 years I will not get better then I have way out:)
AnonymousMay 26, 2009 at 10:21 am
I have had gbs since aug 05 and they couldn’t give me nerot or any other due to it made me sick . Don’t worrie if I hit wrong key having trouble doing things this morn.But I agree with fact after yrs of cronic pain body mal function junction. BUT I HATE TAKING PAIN KILLER’S I AM SO SICK OF HAVING TO TAKE FOUR TO 5 10S A DAY JUST TO MOVE AN FUNTION WITH KID’S OPP’S HIT CAPS. Sorry but I feel were your coming from. But my doc says 10s perc’s is only this she can give for pain. I ask for some thing less harmful but ind doc’s have prob’s I guess with giveing pain killer’s hope they don’t take them away cause i’ll be sick from pain. So jeff thank’s for info now I know why my bodys been acting this way.:eek: och
AnonymousMay 26, 2009 at 10:34 am
sounds like i’m not only one who’s having these prob’s. some times I feel alone cause of pain and then weakness and having to take pain med’s 4 to 5 time’s a day. these are big pill’s to 10/325 percets and they don’t work any more but nothing else they can do. An yes after time your body get’s funny acting from being in chronic pain. I just pray I wake one morning and i’m back and can run an have fun with kids again ride bike and all this would be nice but even if it’s not in cards I LOVE JESUS ANY WAY HE HASN’T LEFT ME SO HE HELPS MORE THAN ANYTHING .HE KEEPS ME SAIN . IF THATS POSS WITH ALL THIS PAIN AN DRUGS. IT’S BEEN ALMOST 4YRS ON AUG 16 TO BE TOTALLY ON DATE. BUT WHAT I’M GRATFUL FOR IS BEING ABLE TO VENT AND PEOPLE UNDERSTAND WHAT I’M SAYING AND VENTING FOR YOU GUYS ARE GREAT CAUSE YOU UNDERSTAND GOD BLESS YOU ALL.:D
AnonymousMay 26, 2009 at 11:52 pm
Hey Jim: I know how you feel. It has been four years last week for me and it has been tough. Like you I have my own faith to sustain me and that is so important. You say there is nothing else they can do for you though the percocet does not work. What else have you tried? There are at least four other pain medications that come to mind that might be better than percocet. If you have not tried morphine or methadone you might ask your doctor about them.
It is sometimes very lonely dealing with pain and fatigue. So few really understand what a daily struggle it can be. But we have this community and I hope you will come back as often as you need. Jeff
AnonymousMay 27, 2009 at 7:02 am
We have a great support group in here and without it I would not know where to go. We all work so well together in here! And everybody understands what you are going through. I too deal with pain everyday because of my disease but I somehow manage to deal with it and keep going. But at night time if I don’t take something I go nuts! Hugs
AnonymousJune 18, 2009 at 12:45 am
This has been a great post to read. My pain was so severe before diagnosis/treatment.
I’m currently on the Fentanyl patch 100 mcg. and was on other things since 1999. It didn’t even touch the pain before as the CIDP was progressing at a horrid speed. The doctors just rolled their eyes and said things I won’t repeat as most have heard it. My best friend saw how I was and said she’s understand if I decided not to live any more. It took 2 years of massive IVIG infusions WITH the pain meds to get under some control.
I appreciate the access to pain meds every day. The IVIG has held ground mostly with slowing the progression. My neuro said how I am after 4 years is how it will be. He doesn’t mince words about my condition. I appreciate that too. I see my 2 forearm crutches in the closet and think back when dragging myself to the mail box was considered an outing.
Thank you both-Jeff and Drummer.
Most folks have no idea and for that they should be very grateful.
AnonymousJune 18, 2009 at 9:07 pm
No one knows your body and the pain you have better than you do. As you said, it is well documented that chronic pain causes other problems that become permanent. I think you should do whatever you can to get relief.
Until you can find other solutions, narcotic pain meds may be what you need to do. I hope you will find other remedys, but until then I hope you find the relief you need with the meds.
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