I was on three fentinol patches while in the hospital (25 mgs? each, 75 total) but asked to be weened off one at a time before I was released. I was hospitalized for 4 1/2 months, so I had time. I didn’t want to become addicted, so I bit the bullet, so to speak, after the first few months. There was only one awful day each time a patch came off then it wasn’t so bad. I still had my oral prescription, which I took myself off of as soon as I was able to manage the pain.

Early on, I expressed my concern to the doctor about the very thing you’re describing. He told me that at the time, it was the least of their worries. Easy for him to say.

Is your son still in a lot of pain and hypersensitivity? Perhaps the doctor could switch him to an oral painkiller that would help with those things but is not as strong. Then gradually, over time, reduce the dosage. Like GH said, you really need to discuss it with the doctor.

Something else GH said re the fear of pain…oh yes, that is a nasty thing. GBS is horribly painful, at least initially. Rehab also hurts a lot. So, I think GH could be on to something there.

By the way, Voltaren helps a lot with the muscle pain. At least it did me. Didn’t take it away entirely but it did help.

Good luck with your son! Hopefully, the doctor will have some answers and solutions for you.

I was hospitalized for GBS in January of 2012. At my nerve conductivity test, I was told that it would take me until January 28, 2015 to be as recovered as I’m ever going to be. I struggle not to be scared of that because of the physically obvious residuals that I still have on the right side of my face and body, along with bouts of pain, spasms, really intense eye pain, fatigue, mental fog/blocks, numbness and anxiety. What if I don’t make it to 100% recovery? That’s my fear.

However, I work at trying not to let that sentence feel like a noose. I try to remain hopeful, listen to my body and keep it moving as normally as possible. It has helped. I’ve also tried therapeutic massage, which worked absolute wonders for my most painful area! It’s expensive though, so haven’t been back. I’ve also started taking lecithin, massage my feet and am eating better than before I got sick. I also want to try alpha-lipoic acid, which was recommended in another thread.

When I’m tired is when most residuals ‘come out to play’.

I’m not convinced that doctors can realistically give us an ‘end date,’ although they managed to scare me with one. I think the body will heal at it’s own pace, in accordance with its ability to do so. Maybe your bouts of leg issues are just slow to heal? Maybe not but you came down with GBS only one month before I did and they’re saying that I am still healing, so why not you, too?

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.

Thank-you, Joseph! And I love what that nurse said to you, I hadn’t thought of it that way. You certainly are a source of inspiration.

Hey, GBS is GBS, you certainly have nothing to be embarrassed about in a speedy recovery. Some of us may be a little jealous of that 🙂 but bottom line – we all lived to talk about it and most of us are very aware of that fact and are mostly just grateful to still be here. Your account of becoming active again so quickly is wonderful, and something I believe we all wish for each other.

This community is united in experience. I think it gives us all motivation to be cheerleaders for our fellow GBSers and CIDPers. Especially in light of how rare our conditions are. It’s good to come together to share and support.

Re living in Arizona, you’d think so with that screen name but actually, I’m from Ontario, Canada. However, I’ve been to AZ a bunch of times and absolutely love it there. Hence the name. 🙂

<quote>For those that have residuals that tend to “come and go”, how often does this happen for everyone? When they do flare up, how long do they stay? Is there anything you do to minimize the impact? </quote>

For me – when I get tired. Duration is usually until I catch up on needed rest. Often times, I don’t even realize that I’m that much in need of rest but the residual symptoms remind me.

I find that the better I take care of myself, the less often I get flare-ups of things like dizziness, tingling, muscle tightening and pain. That includes diet, rest and mild exercise that I’m capable of.

I don’t know if this applies to others but I have read that fatigue often brings on GBS patients’ residual symptoms.

<quote> I apologize for asking so many questions</quote>

Don’t apologize, that’s what we’re all here for – to help and support each other. Ask all the questions you want/need.

I was told that I was to avoid stress and absolutely not work. I work from home and have been doing what I can, as I can, because I want to be financially independent again and get off disability. I’m 59, so age is not on my side but I’m stubborn and understand you wanting to get back to your former life. 🙂

My first thought was whether or not you should return to job sites if you don’t have full feeling in your feet and weak knees. Does that pose potential risk of injury for you, if you can’t feel what you’re stepping on? If it makes you feel any better, I can’t bear to stand in one place for too long, either. Kills my feet, ankles and back.

Are you able to start back at reduced hours until you get a sense of your energy and stamina?

To tell you the truth, I am absolutely amazed that you are able to consider returning to work only five months after onset. I applaud your excellent recovery time, though I realize you’re not quite 100% yet. But it sounds like you’re almost there, congrats!

I had GBS and the numbness is normal, caused by the assault to your brother’s nerves. Also, his eyelids only half closing, also part of it, I had that with one eye. It can take a few months but that does (or did for me) go back to normal.

I don’t think that a second IVIG treatment will help and doubt that they would give it to him.

It is actually almost a year since your post, MaverickOne. Sorry, didn’t notice that. If you come back here, maybe you could give us an update?