• Anonymous
      September 1, 2011 at 11:47 am

      I am newly diagnosed to CIDP. I have spent the last month in and out of the hospital and they have me on pain medicine that works, sometimes. Does the pain ever go away?

    • Anonymous
      September 1, 2011 at 2:29 pm

      Try range of motion exercises (link is on General forum).
      Do slow stretches of tightened & painful ligaments and muscles when warm, till they stretch & relax, repeat till they stretch & relax again, etc.
      The pain will diminish each time. Don’t overdo.

      Wear comfortable shoes and clothing. Rest often and your strength will be renewed and the pain will be better controlled.


    • Anonymous
      October 22, 2007 at 4:09 pm

      Thank you all So good to be here. I am one of the lucky ones . I am getting so much better. Just dealing with pain and fatigue. Until I got on here I did not realize that was some of the symptions. My doc usually was consirned about strength. I have had two bouts with this. One for 9 years … lost strength and feeling that time. This time it is with numb ness and pain. Had strength loss at first but IVIG took care of that . Now just dealing with pain ,numbness and fatigue . Thank all of you


    • Anonymous
      October 22, 2007 at 11:35 pm


      neurontin for pain. take care. be well.

      gene gbs 8-99
      in numbers there is strength


    • Anonymous
      March 2, 2007 at 2:28 am

      Okay had the IVIG and can now walk again , but the pain never really goes away, I take 1200 mg Gabpentin 4 times a day , morphine at bedtime and up to 8 vicodin a day. Still I am in Pain.. Is this the way it is with all of you ? I ache all the time and sometimes I’m in just horrible pain and I take the extra vicodin.. What do you do for the pain my doctor has offered me more morphine but it just makes me so sleepy . Have you found any thing you can function on that relives the pain.. I think the vicodin no longer works because I have used it so much.. Any advice is thankfully accepted…

    • Anonymous
      March 2, 2007 at 7:44 am

      “Over the Hill”

      You know, you take twice as much Gabapentin as I do, pluss the other stuff and it still isn’t enough. Poor you, this is really bad. If I didn’t have my painkillers, I guess I’d go jump off a cliff, or something! Well, I don’t know about that for sure, but I know how bad it can become if I only forget to take my medication onece during the day. I too take my dose (600mg) of Neurontin 4 times a day, but I also take 25 mg of Amitriptyline retard – which means it stays in the system over a period of time and doesn’t release everything at once, mornings and evenings. This drug makes you relax and many here on the forun use it against pain, obviously including me. Paracetamol is also known to help, and I take 500mg of that combined with 30mg Codeine in one pill. Paracetamol and Gabapentin taken together enhances the effect of both. So at lunch and dinner time I take that.

      I hope this could give you some help.

    • Anonymous
      March 2, 2007 at 8:31 am

      I didnt have any pain until recently. My pain is an ache that travels. It will be in my foot one minute then disappear from there and go to the side of my leg or the side of my hand or knee, etc. It seems to be getting worse but it doesnt last. It travels and then stops for a while. Right now it’s hurting in my thumb.
      The symptoms in my hands are new. But, then again, so are these aches.
      I dont take anything but ibuprofen. It seems that the majority here are on that nuerontin…what are the side effects?
      I’m sorry to hear you have to take so much pain meds. I had read that narcotics usually arent prescribed with CIDP b/c it can make things worse.
      Not sure if that’s true.

      good luck to you.

    • Anonymous
      March 2, 2007 at 9:00 am

      Hi o t h, years back i was on all sorts of narcotics for pain, break through pain, fibromyalgia pain, you name it. this was before i came down with gbs. i took soo much meds that i now have such a high tolerance level for narcotics it is scary. i could go up against a druggie and still be sober. and over the years i became allergic to most of those medications. i now take low amounts of neurontin and occasionally diazepam and flexeril. i have found that by taking the lower amounts i don’t have the break through pain, the side effects and i get good pain control. it is the opposite of what i was first started on, high doses of everything-that just wasn’t doing it, so i tried the lower amount after i read an article somewhere about a person in the same situation. it sounds weird and i was very skeptical at first, but i am happy i tried it and i’m getting good results right now. you just have to keep playing with doses and types of meds until you find the right combination for you. take care.

    • Anonymous
      March 3, 2007 at 12:07 am

      I think first & foremost is to try to do anything you can to get this pain under control. But it certainly sounds like you have tried. The first few years my feet were so painful, especially after 3:00, that I would cry & ask my husband to amputate them, I’m not joking. I was on 3600 mg of neurontin then. I would also get chest, shoulder & upper arm pain that only vicadin would touch.

      After 3 years I was down to 1800 mg of gabapentin a day & that cuts most of my foot pain. I also get the muscle pain once in awhile & will either take 3 Advil if it is during the day, or 1/2 a vicadin at night to alleviate it. I have lower back pain that I have just learned to live with. But I used to beat myself up if I took any vicidin, but not anymore, life is too short to be in severe pain all of the time. I hope you find what works for you…

    • Anonymous
      March 3, 2007 at 2:38 am

      You may have to try different types of meds to find one that may work better. There are several anti-depressants each with a different effect that may help….the one I take is Cymbalta, 60mg twice per day (the standard dose is 60mg once per day).

      I also take Dilaudid for pain which works better for me than morphine did.

    • Anonymous
      March 3, 2007 at 12:17 pm

      My doctor wants me to try cymbolta, but after seeing my sister on it , I’m afraid to be like her she wanders around the house half naked and can’t seem to get started at all!! Maybe shes abusing other drugs , I’m trying to be real carefull and not become a drugged Idoit , My wife is younger and we just got back from taking the grandkids to Disney I thought I was going to die from fatique, She got mad and got me a transport and that helped, I guess I’m in denial shes very if you need help just use it and stop feeling sorry for yourself. She wants to demand a Pain Management doctor and have someone fiqure out what I need.. I do not want to make my main doctor mad. She thinks I need to just fight for Pain relief. We are going to the Grand Canyon this summer , we are not riding the mules ( thank God) but we are touring Mesa Verde and alcoma and then Tombstone so I need to get help for the Pain Soon.. My wife wants to get all our travelling that demands walking done while I can still get around as she says Disneyland and other areas are wheel chair an electric cart friendly.

    • Anonymous
      March 3, 2007 at 2:17 pm

      Wow, Cymbalta really seems to be doing a number on her, It doesnt seem as though it agrees with her at all. Do you think maybe she takes other meds that could possibly have this effect on her?
      Have you looked at the other Cymbalta threads. I know that after a while, Chrissy, one of our forum members had a bad reaction with it and it made her angry (I guess that would be the best way to describe it). I have only had success, and believe me, if it wasnt for the Cymbalta, I would be suffeling around the house, depressed and in pain. Most of the time, except for my bad days, which we all get, I am a much happier, peppy person on it – but then it does agree with me obviously.

      If you havent seen the threads on Cymbalta, then go to the “SEARCH” and type in Cymbalta and all the threads will come up that refer to it. Sorry if I told you something you already knew…:o Let us know what you have decided, it will be interesting to know if you do try it how you find it.

    • Anonymous
      March 4, 2007 at 1:17 am

      I’m on opiate pain management– don’t know if I could survive without it. Nothing else even touches the pain– and I can’t tolerate/get any relief from Neurontin, Lyrica, Cymbalta, nortriptiline, amytriptiline, blah blah blah (and won’t be wasting any more miserable months being EXTRA-miserable giving these drugs a fair shake, either– my existence is tough enough! My pain specialist isn’t worried about the big doses of the painkiller, so neither am I. I take Avinza for my long-acting (time-release, take it every day no matter how I feel) and Dilaudid for any breakthrough pain– and I’m NOT supposed to tough it out, either. Chronic pain is a different animal, and I’ve learned that toughing it out is truly not worth it over the long haul.

      I’m lucky in that the pain medication doesn’t make me drowsy, in fact just the opposite– although it can crank me up so much so that it disrupts my sleep. My doctor prescribes something to help me sleep then, and also– for when the fatigue is overwhelming– Adderall (mixed amphetamine salts), to help keep me awake if I have to drive or stay awake for whatever reason. I was nervous taking that at first, and waited for when I had plenty of time in case I didn’t react well to it. Well, I FELL ASLEEP and slept through the first dose, haha! It does help me stay awake as needed, and does not affect my ability to sleep later because it wears off pretty quickly (I do NOT take the XR– time-release– formula!) You might consider talking to your doctor about it.

      For most of my life I was one of those people who never even took an aspirin. Now I’m a veritable pharmacy– but at least there are tools that help somewhat, and new things coming on the market all the time. Keep trying things– everyone’s different, and what works for you will only be discovered through trial and error (hopefully minimal error, haha!)

    • Anonymous
      March 4, 2007 at 1:52 am


      you need a pain clinic! listen to your wife. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      March 4, 2007 at 2:18 am

      It’s usually very difficult to find a doctor that is willing to prescribe opiate pain killers.

      I won’t express my opinion on why this is……

      Then there is “Catch 22″…..

      If you need pain relief and your present doctor won’t give you “good drugs” your only hope is to find one that will. If you try to find a doctor that will give you what you need, you run the risk of being labeled as “Doctor Shopping” to get drugs.

      It is amazing how so few doctors are willing to go against the “establishment” and incur the attention, if not wrath, of the DEA.

      I have been very lucky.

      When I was disabled from auto accidents and was in constant pain there was no doctor that would help. The response/reaction I received was either a “no, I won’t give you narcotics (pain relievers) for any reason, even if you are ready to commit suicide”, or “you need to get hold of yourself and stop being a whiner, the pain is “in your head” and you need to learn to accept it”.
      One really terrific doc in a town/area know for it’s religious fundamentalism, suggested I needed to pray and attend church.

      See how lucky I was……okay, okay, now for the “luck”….

      I moved to another town in the same state where my wife-to-be began working on her Masters Degree. I chose a local doctor because he was both an Internist and kidney specialist. Because of the amounts of non-steroidal anti-inflammatory meds I was taking my kidneys went into failure a year before, but I bounced back.

      My new doc was a bit of a non-conformist. He gave each patient as much time as they needed and was in constant “hot water” from the HMO for not seeing enough patients per hour. His partners in the clinic [U]he founded[/U] finally forced him out over it! He set up another practice and I was okay.

      Just as he announced he was giving up and taking very early retirement, my wife graduated and we moved to California. So, I had to give up the only doc that would give me pain meds. Come on luck…..

      Just after we moved my lower intestine perforated and I had peritonitis for two days before they realized it (that’s a long story…..mostly my fault). I “died on the table”, an ICU team worked on me for several hours and saved me. I spent a month in hospital and they couldn’t even close me up because of the infection, and was not allowed anything by mouth, not even water.

      I was getting morphine IV continuously but my back pain from my former injuries got so bad from laying in bed so much that I was nearly out-of-my-mind with pain……. My surgeon, who every nurse I had for two months assured me was the only reason I survived, was at a loss for pain control.

      He asked a pain specialist to see me as a favor to him. I had tried to get an appointment with this pain doc before my peritonitis and was told flat out he was not taking any new patients. But because he was seeing me for the surgeon took my case for pain management after I was released. Oh yes, he loaded me up in the hospital with all sorts of great stuff and I was finally pain free.

      When I got the liver infection that caused my GBS, the pain doc had to turn me over to my present doc, who had been a resident with my doc in their youth. He has continued to give me Dilaudid, and is a professor of Internal Medicine at UC Davis.

      Lucky me. 🙂

    • Anonymous
      March 4, 2007 at 9:38 am


      I totally agree with you about not toughing it out! I hope I dont sound sarcastic when I say Good For You!! I only say that because I was like you regarding not even wanting to take an asprin in the past, and I often feel guilty because I take meds on a regular basis now. Looking at my quality of like now, compared to two years ago, I have learned not to make any excuses for taking them anymore ….. well most of the time in any case 😮 . Life is too short to try and live without something that can help you be comfortable and happier a lot of the time, specially when there is family involved.

    • Anonymous
      March 4, 2007 at 3:11 pm

      I just had my first IVIG last week for CIDP. 2 days went ok but the doctor on Friday wanted me off the Gabepentin. So I went off…what a nightmare. I too was in so much pain all night. I finally got up and found the bottle of Gabepentin and took 2. I also took 2 at lunch today. I think I need to call Dr and tell him IVIG doesn’t take the pain away. It did help and I have not had any electrical shocks or shooting pains since the IVIG but without pain management and sleep I am useless.


    • Anonymous
      March 4, 2007 at 11:44 pm

      What made your doctor think that giving you IVIG would take away all of your nerve pain? Also, why would a doctor be so concerned about weaning one off of a drug as safe as this (for nerve pain, anyways.) Is he thinkig about the class action lawsuit initiated by those who were given neurontin for depression?
      Anyways, stay on the gabapentin, you know how much it helps with the nerve pain, & please get him to understand as well. In nearly 5 years, not one doctor has ever questioned my need for this drug, if anything, my main neuro questions why I am taking such a low dose of it, he said I should be on twice what I am currently taking for the amount of nerve damage that I have. I take 1800 mg daily now, used to take 3600 mg before.

    • March 6, 2007 at 7:06 am

      I was a crusher operator at a gold mine before I got sick; tough, healthy as can be and thought I could do anything. Quality of life is important to me, the pain got to be horrible, between my pc and my neuro I’m doing the lyrica:75mg twice a day and have the fentanyl patch:75mcg/h changing it every 2 1/2 days.This seems to keep the pain down to a dull roar. Sometimes when I’ve over done it I’ll take a vicadan. I think that with the chronic pain it’s okay to do what you have must to try and live as full of a life as possible. As my doctors say the CIDP isn’t going to go away, we’re not abusing drugs we’re trying to carry on. It’s taken four years to get to this point, I’m not painfree but neither am I on the sofa watching life pass me by. Keep trying and hopefully they can come up with a plan to help keep the pain down.

    • Anonymous
      March 7, 2007 at 11:46 pm

      Pain can be such a bugger.

      I exist in a pained world. I cannot take enough to make it go away, and whenever I get close, I am dysfunctional. Sounds like the same boat you are in.

      I started the road to some success by trying to define how my pain hurt. I have sometimes the shooting nerve pain, which is different from the morning foot pain, which resembles plantar fascitis. But where plantar fascitis goes way, the longer I am on my feet, the more intense the pain becomes. It is a “when I walk, my feet hurt”, pain. But it is a pressure related pain. If I get off my feet, it will subside somewhat. Then there is the burning pain.

      Once I could identify the different kinds of pain, I could help my pain management Dr. perscribe some medication to deal with it.

      I do think it is important to get with someone for pain management, as others have suggested. But he/she can only help you if you can identify the kinds of pain you suffer.

      In my own case, I take a little less and stay coherent. The downside is that I still deal with pain. But for me I accept it grudgingly. I want to function. The other thing is to listen to my body, and stop before I punish myself too much. If I overdo it, I pay dearly.

      Chronic pain stinks. Many times I wish for new feet, or just chop the da%# things off. I can still walk some. I relish these times. Soon, I will be totally wheelchair bound and be unable to walk without extreme pain.

      They were the best of times, they were the worst of times.

      Dick S

    • Anonymous
      March 29, 2007 at 1:33 am

      Hello all! I am Linda G/CIDP, diagnosed 2005. Cat, thanks for your words of wisdom about narcotics! I, too, am on Avinza and refuse to apologize for it! My family, ( who has no real clue about my relentless pain!) is so upset i am on “Narcotics” ! The onset of my pain was in 2003, so I suffered for 2 long years until my dear Doc finally gave me Avinza/ Vicodin ! I have GERD so was unable to tolerate alot of drugs to begin with, and then the ones I tried did not make a dent in my pain. I am so grateful for Avinza! I don’t get sleepy on it either..I am just able to function. I still have some residual pain now that my disease is spreading, but I will cross that bridge when I get to it. I found taking it ONE day at a time has been helpful, along with meditation, and NOT overdoing it! It really is a learning experience, managing this disease! I really enjoy this site, I have learned so much from you all! Peace be with you!