will the burning and pain ever go away

    • Anonymous
      February 22, 2011 at 11:41 pm

      I was diagnosed with CIDP in July 2010 and by Sept I could not walk anymore. I still am unable to walk alone but I am regaining strength in my legs and seem to be improving even if it is very, very slowly. Right now I am on prednisone and getting IVIG every two weeks (fixing to go to three weeks in between) and also taking 2700 mg of gabapentin each day.
      My question is…does this burning sensation in my hands and feet ever go away ??? Every time I try to stand up it seems like it just lights them up. Does anyone have any suggestions ??????

    • Anonymous
      February 23, 2011 at 12:51 am

      I am sorry to hear that you are in pain.

      I don’t know if it will go away as all of us experience different things as we deal with this GBS/CIDP.

      I know that the IVIG has helped me but it took several treatments before I noticed a difference.

      I take gabapentin for the pain, it doesn’t take it all away but does take the edge off.

      Hot tub and warm baths help me

      take care

    • Anonymous
      February 23, 2011 at 9:50 am


      I can’t speak about the pain but I would suggest not stretching out the treatments if you are still having trouble walking. Once you are able to walk again then think about changing your treatment schedule.

      How much IVIG are you currently getting? I would recommend talking to your dr about getting a loading dose, which is 2 grams per kilogram of your body weight & staying on that for a while.

      Steroids can also cause pain.

      Dell’s Mom posted a link to a discussion about IVIG dosing by Dr. Dyck out of Mayo in Minnesota. If you search the forum I’m sure you will find it.


    • Anonymous
      February 23, 2011 at 10:01 am

      Over the years, more than 10 years now, the worst of my pain, tingling and burning has subsided.

      The pain, tingling and numbness, which is limited to my right hand, is better, but so far it has not ever completely gone away.

      It has, however, improved a lot.

      Why improved? – I’ve tried almost all the meds talked about on this forum. In particular I dislike the depressive, seizure, brain based drugs preferring alpha Lipoic acid and, In my Opinion, high praise to a 4g dose of fish oil every day for years.

      It’s an individual trial and error deal. But, don’t give up too soon on each trial.

    • Anonymous
      February 23, 2011 at 1:09 pm

      Hang in there. Like everyone has said, each of us responds somewhat differently. You will find the right combination in time.

    • Anonymous
      February 23, 2011 at 4:17 pm

      How does fish oil decrease pain? Does it decrease electric shocks also? How much ALA do you take and how long does it take to work? I take fish oil–but I take 1200 mg/day– for cardio health. thanks

    • Anonymous
      February 23, 2011 at 6:57 pm

      I was in excruciating pain in my arms, legs, hands, and feet for months leading up to and for awhile after my CIDP diagnosis in April of 2010. I take 450mg daily of Lyrica, which really seems to help. I also get 60g of IVIG (Gamunex) every two weeks, which also really helps. Although I do have some foot numbness and hand tremors, my biggest problem is pain. Thankfully, I have never had any weakness or loss of motor function. The pain can be significant at times to this day, but I think we all here learn to cope with a certain amount of chronic pain. When I get a nasty flare-up of pain, I have been advised by my pain management physician to increase my dosage of Lyrica as high as I can stand it. I have taken as much as 900mg in one day, which knocks me for a loop. I feel very fortunate that most of the time my pain level is very tolerable, and I can function. A lot of people with CIDP improve, and I see no reason why you won’t as well. Hang in there and keep trying to find out what works for you, and you will. Best of luck. Let us know how you are progressing. Try as best you can every day to live with kindness (especially to yourself) and courage. You are not alone!

    • Anonymous
      February 23, 2011 at 10:41 pm

      Hey exosurf- sorry, I couldn’t say why the fish oil works. I just get worse without it. Or, with less of it.

      I don’t take the ALA anymore, but I did take it in the past. I’d recall the dose was about 400mg/day for a long time. But, you know what? I have taken many, many things, some at the same time. Things such as MSM. For more on MSM see webmd, for example.


      enter msm in the look up box.

      What works for cardio? more vegetables, lots more vegetables. less meat. Everyday. Forever.

      Best wishes that you find what works for you.

    • Anonymous
      February 27, 2011 at 9:13 pm

      Yes, it should lessen greatly as time goes on. Have faith, and be patient, though it’s so hard to deal with this.

      For the first couple of years, I felt as if all my skin was being salted with fiery shocks, and the repeated contractions in my muscles were agonizing.

      But after 3 1/3 years, my body is now comfortable much of the time.
      I can step on the floor and my feet no longer have excruciating tingling, burning pain. I can shower and my skin does not react in terrible pain to the splashing of the water. Everything has gotten better, though I am not the same as before. I can still feel things, my handgrip is much better, but I know I have lost some sensation where the GBS attacked the most. I just make sure to protect myself from heat and cold, and look before I step and watch out for potential injuries. It’s getting better.

    • Anonymous
      February 27, 2011 at 10:10 pm

      I have had varying degrees of pain for years now. It is like a roller coaster (same as the way I feel physically). I find ultram helps usually, but as the weather changes or my disease cycle gets worse opiates are the only thing that truly help me.

      Lying in bed contemplating hacking off my toes just to get rid of the pain or opiates. I choose opiates.

    • Anonymous
      March 5, 2011 at 1:18 pm

      I wa s diagnosed with CIDP Feb 2006 and immediately went on 5 ivig’s every 4 weeks for two years. Then we went to 3 every 4 weeks til Feb 2010. Went off for a year I am now back on 5 every 4 weeks to be evaluated in 6 months.The doctor also prescribed Tegretol both of these treatments seem to be helping the burning cold in my hands. In addition I have been diagnosed with pulmonary hypertension for which I am being treated with blood pressure meds, Lasix and nighttime oxygen. Hang in there and check out Tegretol , it is inexpensive and seems to be effective.

    • Anonymous
      March 12, 2011 at 4:42 am

      I had my initial attack of CIDP 22 yrs ago in 1989. A second major relapse in 2001 and am currently relapsing. I have had the horrible pain which I describe as having a thousand hot needles being stuck into my hands and feet. I take 2400 mg nuerotin/day plus I have percocet for “break thru” pain which helps a little to take the edge off. But the best pain relief I find is avoiding rapid temperature change, especially my feet. I put my feet in a foot bath w/ electric vibrations and w/ hot water. I also get a lot of relief by having my wife message them by using her fingernails to squeeze down. At first it hurts but when she’s done the pain almost goes completely away.

      Just my two cents worth but yes, eventually the pain goes away with recovery.