Support and info for my friend :)

Wow, that must have been terribly frightening for your friend to experience such a fast-moving and unpredictable disease while on a trip like that. I can only imagine! He must be beyond anxious to get back home. How long has he been in the hospital? Did he have IVIg or plasmapheresis? Do his doctors believe his condition has stabilized? Is he still having breathing problems, or is that all right now?

You asked several questions about pain. Truthfully, no one here can tell you what your friend’s future will be like where pain is concerned. We each have very individual disease processes, different symptoms at the worst point in the disease, and therefore different after-effects during recovery (and thereafter).

As for my personal experience, I was in tremendous pain in the early part of my experience with GBS… It felt like acid was flowing through my veins and eating my body from the inside out, or like I was being continuously electrocuted without a break, or like every millimeter of my skin was being stabbed with microscopic knives… It was unbearable. All of this stopped within 48 hours of starting IVIg treatments, and it hasn’t come back since. Though I still have residual tingling, numbness, weakness, and a variety of other symptoms, thankfully the type of pain I was in initially has never returned. When I was discharged from inpatient rehab, I left without a prescription for pain pills because I didn’t need them. So far I’ve done all right without them.

The only truly painful thing I have been experiencing is muscle spasms in my arms and legs at the end of the day and during the night, probably because my muscles are so exhausted from daily exertion. You can actually see the muscles contracting under the skin if you stare at my arms and legs while it’s happening. It’s like non-stop charlie horses sometimes when they are at their worst. However, I don’t need to take pain pills for this; instead, I take a type of muscle relaxer to settle down my spastic muscles. The muscle relaxer plus some Tylenol or Advil works just fine, and I only take them when I need them. Like your friend, I am very wary of turning to pain pills too quickly or anything else that might be addictive. It’s not a given that such drugs are in his future.

That being said, there’s certainly a lot of struggling and soreness involved with rehabilitation from GBS, as the only way you know your body’s limits is by pushing yourself too far. It’s shocking how little you have to do before your body rebels against you and leaves you miserable for a couple of days before you’re ready to do more. Even now, if I push myself too far, I’m so stiff and sore for several days that it’s hard to do more than lie on the couch and complain.

I do know that many people must deal with nerve pain after GBS, though that hasn’t been a huge issue for me. I do still have occasional “electrical shock” feelings that shoot through my legs and feet that are intensely painful, but these episodes are so brief that I do not feel the need to medicate myself. I’d rather just put up with the occasional problem since I feel like I’m handling it all right.

Please feel free to ask if you have any more questions about your friend and his recovery. I hope he gets transferred to a hospital closer to home very soon! Thank you for being there for him. Knowing that people care about you and support you is so important when you’re stuck in a hospital, scared, lonely, and wondering what’s going to happen to you. I’m glad you’re helping him get some of the information and reassurance he needs right now.

hi lisa & welcome,

whether he gets pain & to what degree no one knows, but since he has none to date he may not get any. neurontin for pain. it is not an opiate, therefore non-addictive. for most acupuncture may relieve pain, but only for a short time w/o more treatments. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Lisa,
I am so glad you found this site for your friend and are keeping him informed. The scariest thing about gbs is not knowing anything about it and where it is going. I had it 11 years ago and I had pain like you wouldnt believe and I recovered in two months. I returned to the Ice as a figure skating instructor.
I had it again in 2004 and like your friend we were in Florida and went through hell durring misdiagnoses with aerogant doctors. We left and my husband drove 28 hours straight to get me home just in time to get on the vent. This time the pain wasnt as bad but I was on full life support and fully paralyzed for 4 months. They told me I would never walk again. After agressive treatments I was on the road to recovery. It was funny because everyone I came in contact with all said “your so physically fit (I wasnt, I am just little) and your an ice skater, I cant believe this happened to you”. Thats all irrelevant.. GBS hits anyone anywhere. I am back on the ice again and it sure was a miracle. So tell your friend I want to see him on this site and hear when he is back on the ice. That will be great therapy for him when he recovers….which he will. My prayers are with him. Joanne

Hi Lisa,
You are a very supportive friend, just what your friend will need in the weeks/months/years to come. (not to sound negative) I recovered very quickly my first bout with GBS and was at 90% within 4 months. The next 2 1/2 years I had slight residuals, some tingling and numbness and when tired my balance was off. Then I caught the flu and went back to square one and then some. So just let your friend know he WILL recover, he may recover quickly but be very, VERY careful for the rest of his life to try and stay healthy. Know when to slow down, be able to say “no”, don’t over extend himself. It’s so easy to say and so hard to do.
Gene who’s on this forum recommended a Dr Michael Graves at UCLA
have your friend check him out, it will be worth driving in traffic.
Good Luck to your friend, I hope he is up and walking soon. (and I don’t believe it’s one toe at a time, I went from wheelchair, to walker, to cane)
Take Care,
Joyce:p

Hi Lisa,

I am brand new to the board and just saw your posts. What a wonderful friend you are!

There are local GBS support groups all over the US. In fact there is probably a list of them somewhere here on this board (i’m just too new to know), or you could call the main office. When I had GBS in 1985 the support group people came to visit me. A walking, talking former GBS patient was the best medicine in the world. There’s got to be a chapter near Valencia.

Your friends onset sounds very similar to mine. My recovery started out very gradual, hands and arms first, and legs and feet came back slowly. I think it’s just different for everyone. The important thing to know is that you (he) will recover.

I’ll try to send you a PM with my San Diego phone number. You can always give me a call. All my best to your friend!

Not everyone experiences pain with GBS. From what I have read it is one of the early symptoms so i would guess that if he didnt have it in the early stages, then he probably wont have it. That is totally different from the pain he may experience during rehab lol. But that is just hard work type pain!

I had a rapid onset and was completely paralysed. When i strated regaining movement it was very gradual – ie. one toe, regaining control of my head, slight movement in my fingers etc. While that sounds painfully slow, each movement was a major milestone to me and really gave me hope that i was improving. In my case things then progresseed quite quickly and iw ent from not being able to stand to walking within a matter of days. It really does vary so much from person to person.

But all od us here are living testimony that there is life after GBS and we look forward to talking to him when he is able.