what else is there-other than physio

    • Anonymous
      July 7, 2013 at 9:19 pm

      i am 21 and diagnosed with gbs about 2 months ago.i spent the first 10 days completely paralysed down the waist and having severe weakness on hands too in a hospital and took immunoglobulin for 5 days.i’m still on medication for the nervous system to avoid pain,tinglings,etc and right now i live in a rehabilitation center.it’s been 6-7 weeks.i am on a strict program of exercise(daily physio and water course,gym 3 times a week,ergotherapy,and a combination of yoga and pilates as therapeutic exercise).i can walk with a stick.

      THE REASON WHY I’M WRITING HERE is i feel confused and sometimes i am depressed noone can set a date of full recovery.ever since the diagnosis the neurologists said it is treatable and things will turn out good for me in the end since i’m young and i was lucky to find it through the first week.but when is the end?i tried not to search too much in it but i’ve been reading stories of other patients who still worry,years after their recovery,about the future and the possibillities of paralysing again.

      has anyone found anything yet?is there anything else than exercising and waiting to do?i also took some vitamins but no doctor admitted their value.any extra advice on what can anyone do to protect oneself during and after recovery?

    • GH
      July 8, 2013 at 1:30 am

      No one can set a date for full recovery or even say whether recovery will ultimately be 100%. Two months is nothing — recovery takes one to three years to reach maximum. The rate of recovery slows over time. Whatever your level of recovery, you must fit your activity to your present condition so that you are challenged, without overdoing it. There is no magic shortcut. I take vitamin B12, which is thought by some to promote nerve healing, but I don’t say it will do anything at all. It doesn’t hurt.

    • Anonymous
      July 15, 2013 at 5:58 pm

      You might want to look into anti-depresents. They really do help with this illness, it’s such a sad one. I know they helped me.

    • August 7, 2013 at 1:36 pm

      Massage therapy does wonders for me.

    • Anonymous
      August 13, 2013 at 7:18 pm

      What helped me for the past 5 1/2 years of this condition is proper diet and regular full-range-of-motion living.
      I crave protein constantly: lean ground beef, milk, whole grains and cereals, nuts, and after I eat protein I am stronger for the next few days. I take a multivitamin/multimineral pill daily, and without them, I am much weaker. In spite of the terrible pain, I find it necessary to use as many of my muscles as I have left. Last year, I found I was losing much of the use of my right hand, and waiting for it to get better didn’t help it, so I am consciously doing things I used to do with it…sewing, writing, playing musical instruments, gripping things with my right hand, and forcing it to move. It hurts terribly, but if I flex the fingers, and wait a few seconds, I can flex them a bit more, and then wait, then flex again, and after a minute or so, I can actually make a loose fist.

      So, I’d recommend you do the things you used to do…in moderation; use all the muscles in your body…with patience and endurance. And accept the pain, but don’t overdo anything, because that will only cause a setback. When I accepted the pain, everything became more endurable, and now I know I can still do many of the things I used to do, but it will cost me time and pain. Be thankful you are an adult, because you will be able to deal with pain much more easily than a baby or a child with this condition…their instinct is to move freely, but pain will prevent them from trying…but you can out-think this condition; it’s a rough road, but you can live, and enjoy living…anyway.

    • Anonymous
      December 15, 2013 at 10:21 am


      My father is suffering from GBS. It’s a Pethathic disease. I have heard that some pain killers also cause depression specially in this disease. You should consult ur doctor and discuss this depression.
      Hope n pray you recover sooner than expected.

    • Anonymous
      December 18, 2013 at 10:38 pm

      I had GBS when i was 13 years old, i am now 44, I was totally paralyzed from the head down, they told me i was lucky because i could at least close my eyes on my own.. i was in ICU for 6 weeks, on a ventilator for 4 weeks, and it took me about 1 full year to get back to “normal”, so hang in there it will be fine, I have been married for 26 years now and have 3 girls, 24, 20, and 16. I hope this helps, your future looks brite.

    • February 22, 2014 at 6:37 am

      My hubby came down with CIDP 3 years ago. 8 months of going down hill. Paralyzed in a nursing home for 4 1/2 months. He was 56 and about as active as possible.

      He has walked his first half marathon, skis every sunday and kayaks 2-3 times per week when the weather permits. Actually was able to run a bit last week. Recovery is still happening. Not as fast as we would like, but still happening.

      I made him take tons of supplements. I figured if there is any chance it helps, go for it.

      Fish oil (Barleans), Vitamin B12, Lions Mane, Vitamin D (we live in Washington state). His neurologist has been amazed at his recovery. Still not 100%, but pretty darn good. We changed to organic whenever possible to take any stress off the body. We eat a very healthy diet, but enjoy our vices a bit also.

      Remember, many of the situations discussed here may not be a true overview of how people recovery. Many people will go away after they recover. Move on and live their lives.

    • February 26, 2014 at 6:43 am

      n.d. hang in there. I came down with GBS last year in May. I was like you, by the 6th week I was wondering why I’m not healing as fast as I thought I would. It will happen, you just gotta believe and keep working at getting better. Don’t give up. I am now back to work. I’m about 85% and I know I will get even better. It’s a slow process so HANG IN THERE!!!

    • Anonymous
      April 7, 2014 at 9:23 pm

      It has been 4 1/2 years for me. In the last 6 months the pain has gotten worse and my meds are not able to reduce it to a tolerable level. My doctor has referred me to a pain clinic. Has anyone out there tried this? Please advise, and thanks in advance.

      Hoping this will be a healing work-around….

    • April 8, 2014 at 1:57 am

      My GBS/CIDP/MFS has not bee too painful except at onset in 2008. I have not needed anything for pain since 2009.

      My wife has a tough case of very painful Fibromyalgia and has received good treatment from a pain center at a “GBS-CIDP center of excellence” here: http://www.cedars-sinai.edu/Patients/Programs-and-Services/Pain-Center/index.aspx

      Have you tried Gabapentin (Neurontin) or Pregabalin (Lyrica) for your pain? Others on this forum have said Lyrica worked better than Neurontin for their GBS/CIDP. Some have reported relief using Amitriptyline (Elavil). Epidural injections or peripheral nerve blocks may be needed in some cases to help relieve sever pain. If you can, choose a pain center that has experience treating pain associated with peripheral neuropathy.

      • Anonymous
        April 8, 2014 at 7:01 pm

        Thanks for the reply! I’m back home from the pain clinic and going to the links you provided soon, but wanted to let you know the outcome of my first visit and to answer your questions.
        The pain clinic doctor was aware of GBS and it’s 4 variants (news to me – he named them) but has referred me to a neurologist for Idiopathic Progress Polyneuropathy testing. I feel very good about that decision; I’ve not seen a neurologist since 2009. He has treated peripheral neuropathy patients before, but paused when I voiced for the first time that I fear another on set: the pain and numbness is ascending, just like in 2009.

        I’m on gabapentin (which he increased the dosage and strength gradually over the next 12 days) for the nerve pain, and Nabumetone for my muscle pain, and baclofen for the muscle spasms in my lower back. All since 2009.

        Thanks again and all the best to you & your wife!

    • April 9, 2014 at 3:43 am

      mj909, Sounds like you connected with a great pain center! May I ask which one?

      I’m sorry to hear you may be having a recurrence, I hope you’re wrong. RGBS is extremely rare 4.5 years post GBS, CIDP is the more likely reason at this stage (assuming you ARE having a relapse of your GBS-like symptoms). More info about CIDP symptoms and recurrences can be found here:
      • Older summary article for patients – http://ibmmyositis.com/cidp.htm
      • Latest article about symptoms – http://emedicine.medscape.com/article/1172965-clinical#showall

      My best wishes to you for good news and better pain management!

    • Anonymous
      April 26, 2014 at 12:44 pm

      I admittedly had a light case of GBS, but am finding alpha-lipoic acid to be a great help with the residual tingling, numbness etc in my hands and feet. It’s recommended for peripheral neuropathy (not that any doctor told me about it of course!) and is relatively swift to act, unlike many supplements – I had results after about a week.

    • Anonymous
      April 29, 2014 at 9:24 am

      I now have a new diagnosis after back x-rays: arthritis in my spine. L4 and L5 have deteriorated and the nerves are pinched – that is the cause of intense pain, but he has not rules out anything else. I will still go for the Idiopathic Progress Polyneuropathy testing and now a MRI as well. I begin PT today; any alternative to surgery and drugs is o.k. by me 🙂

      I read up on the ALA – Nacoco’s recommendation – it sounds amazing!!! I can’t wait to talk to all doctors and get their reaction (unless they’re adamantly against my trying it – I will).
      Thank you for the valuable info – everyone should read up on this!!!
      Just Google “alpha-lipoic acid”. Incredible!

    • Anonymous
      April 29, 2014 at 6:16 pm

      You’re welcome mj909. It seems to be pretty good stuff – I know that in some countries it’s actually routinely prescribed for diabetes-related peripheral neuropathy. Best of luck with your tests!

    • May 6, 2014 at 10:33 pm

      Thanks for mentioning the ALA! I’d never heard of it but mj909 is right, it sounds amazing! I assume I should be able to find some in my local health food store.

    • May 7, 2014 at 1:38 am

      ALA has been a topic of forum discussions for a few years. Please see the following discussion summary for more info about ALA:

    • May 7, 2014 at 9:39 pm

      N>D, hope you find my note on this thread, since I am sincerely curious about how you are doing. I remember feeling scared as hell in my second month, trying to make sense out of the best way forward. What worked for me was to follow the regiment created by my neurologist and general practitioner, to do the physical therapy even when I didn’t want to. But added to that is the social stuff a young person your age must contend with… bet you are under a lot of pressure?

      So, now that you are a year into recovery, how is your progress?