what else is there-other than physio

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.

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.

Massage therapy does wonders for me.

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.

Hello.

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.

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.

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.

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!!!

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….

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.

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!

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.

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!

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!

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.

ALA has been a topic of forum discussions for a few years. Please see the following discussion summary for more info about ALA:
http://www.gbs-cidp.org/search/alpha+lipoic+acid

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?