Guillain Barre Syndrome

I don't know if any of you are familiar with Guillain Barre, or if any of you have had it, but I was recently diagnosed with it. I posted a little while back saying I had a vitamin E deficiency. The doctors finally figured out that it is actually Guillian Barre.
Anyway. This whole situation has been extremely frustrating and extremely difficult for me. I'm mostly just posting about it to get this all out and to see if anyone else has gone through this and has some advice or guidance. It started out as numbness in my feet and legs and then it went all the way up to my chest. But now I also have muscle damage in my legs as a result of this and I'm unable to walk on my own now. I have to use a walker and I'm only 20! >:( I'm also in a great deal of pain now. I hurt all the time, mostly in my toes and my legs. It's excruciating. I've been given some pain medicine to help, but I have to take very low doses because the doctors are afraid it's going to damage my liver. The last couple of times I had bloodwork done, my liver enzymes were pretty high. I'm having an ultrasound on it tomorrow, so hopefully we'll know something about that.
I'm finally able to go back to work, which is good. But I'm only allowed to work half days for a while. I guess I'm just frustrated because I can't function like a normal human being. I've said this a hundred thousand times, but I'm going to say it again. All I want to is be normal again. I'm tired of all these complications. I've lost 73 pounds and I don't even get to enjoy the weight loss because of my condition. After losing this much weight, I should be able to enjoy how much better my body feels and trying on new clothes and all that. But I can't. :/ I had to move out of my apartment because I lived on the third floor and now I'm back to living with my mom. I have to have help to do a lot of things. There's no way I'd be able to live on my own right now. And that just drives me crazy. I'm incredibly independent and I hate relying on other people for things. Especially simple ones I should be able to do myself.
I'll admit, I'm not as bad as I was. I spent three days in the hospital and that was probably my worst point. I really could barely get myself out of bed at that point. Someone always had to help me to the bathroom, my mom had to bathe me and dress me. It was just horrible. But I got better. I started walking a little better and everything. Now I just feel so frustrated because it's still really hard to walk and now I'm in a great deal of pain. I barely get any sleep because of the pain and it even kills me just to sit at my desk at work for four hours on the phone. I had some hope because I did get better, but now I just feel like I'm getting worse because I'm in constant pain. And I'm tired of everyone around here telling me that it's going to be okay and that I'm going to be able to walk like normal again. Nobody knows that. The damage could be permanent. Most people do recover, but I'm just losing some hope now. It's so hard to stay optimistic. I've never gone through something like this. Definitely the hardest thing I have EVER done.
Thank you guys for letting me rant/whine. I just really hope to talk to someone that I understands what I'm going through. And I really just needed to get that all out. Sorry it's so long! Thank you to everyone that took the time to read my whining. Lol.

I am so sorry to hear that you are having these issues! My friend has that as well and I know how frustrating it is for her. I have heard that it can go away so I will keep my fingers and toes crossed that it goes away fast and never comes back.

 Thank you. I appreciate it. It really is frustrating. :(

I'm so sorry you have to deal with all that.  My mother had Guillain Barre a couple years ago.  She was in the hospital for several days and could not get out of bed at all.  She also was unable to swallow for a few days.  She was afraid they were going to have to put in a feeding tube but then her ability to swallow returned.  She's pretty much recovered fully now but occasionally still has slight difficulty swallowing.  It took a while to recover, though.  She had to go to physical therapy for quite a while to become very mobile again.

I hope you are able to get better over time.

I guess I'm lucky because I have a "mild" case of Guillain Barre. It can effect your breathing and swallowing and such and I didn't have any of that. It's not uncommon for Guillain Barre patients to be put on a ventilator. When I was in the hospital, I could get out of bed, but only to use the bathroom or shower and I had to have an enormous amount of help. I can't tell you how many time I had to have someone pick me up off the toilet seat. :/ I'm going to physical therapy and my doctor has actually recommended that I do hydrotherapy to take the pressure off of my knees. I haven't started that just yet, but I'm really hoping that it helps.

Yeah, you're lucky it wasn't worse, but that doesn't make what you're dealing with any easier to deal with, I bet.  I'll be thinking of you.

 You're right. It's incredibly hard and I have days where I just feel like giving up. Thank you for thinking of me. I appreciate it.

 Ashley, thank you for sharing. It is very easy to feel down in the dumps when your health is compromised.  Last year I started getting extreme weakness in my legs to the point where I thought I would fall.  Matter of fact my legs were so weak that my dog darted during a walk and I fell and broke a bone in my foot, thats how weak I was. My MD tested me for Guillain Barre, but thankfully the test was negative. Turns out it was severe arthritis combined with loss of muscle tissue from just laying around all day long for months (I was recoveing from a different surgery).  After I broke that bone in my foot, my knees gave out and locked!!! Yes locked! I was on crutches for months. No doctor would help me citing that it was because of my weight, and that all i needed to do was to lose weight. I was helpless, and I DO LIVE ALONE. But I kept KNOWING that things would work out. I know that it is NOT MY DESTINY to be wheelchair bound. So I started doing my best to help myself since the medical community would not help me. Thankfully, eventually I was able to get around without crutches. That time was hard for me, I had to take like 2 minute showers in the hot summer because I my knees could not support me in the shower, and at any time I could collapse and fall, in the shower which is upstairs, and I live alone, and if I stayed in there any longer than 2 minutes I felt as though my legs would give out and I would collapse. So I dig where you are coming from. 

I by no means want to minimize your agony, however all I can do is offer you HOPE!!!!

It is my understanding that the disease improves and / or goes in to remission. Stay faithful! Know that the mind afffects the body, and sometimes ....sometimes, the body has no choice but to follow the mind SO THINK GOOD THOUGHTS! Yes by all means it's normal to mourn the loss of your health, but it is my understanding that this disorder often improves or goes into remission, just stand by and wait for your blessing to come. Things will get better! But you must believe it. 

Thank you so much for your support. I'm trying very hard to believe things are going to get better. Overall, I've kinda sucked it up and just dealt with it and tried to live as normally as I possibly can. It's just getting much harder now that I'm in all this pain.
Reading about your situation just made me cry. We had very different things wrong with us, but it's so similar, at the same time. After my legs became numb, I noticed I was having trouble walking. I didn't go to the doctor about it at first because I thought it had to do with me not eating like I should have. Before this stuff started happening, I got sick every time I ate, so I stopped eating because I got scared and psyched myself out. It started effecting my vision and stuff, so I assumed the numbness/weakness was a part of that. Once I started eating right, my vision got better, but my legs just continued to get worse. It got to a point where I had to walk holding my hands against a wall for support. And I then I started falling. I fell at home and work several times and I was unable to get up stairs. 
I'm so sorry that you had such a difficult time with the doctors. I can relate a little bit there too. I went into the hospital right before Christmas and I had such a horrible experience. I barely saw any doctors because of the holiday and I was treated so poorly.
I definitely admire you for your determination. There is absolutely no way I could go through any of this living on my own! And even if I tried, there's no way I could get up the three flights of stairs at my apartment! I'm getting to the point where I can bathe myself, but I have to stand in the shower with my walker and a towel under my feet so that I don't fall. But if I'm having a bad day and I'm hurting really bad, I always ask my mom to at least stay in the bathroom with me just in case. You are an incredibly strong person for getting through something like this on your own. If it weren't for my family and my boyfriend, I don't know where I'd be. They've all been incredibly supportive and helpful. 
I've done a lot of research on the disease and talked to my doctor about it. Most people do fully recover from it, but not all do. I guess I'm partially afraid that I'll be a part of those that don't. But I am young, so I do have that in my favor. I really am ready to be better. I guess I'm also impatient. Lol. I really, really appreciate you sharing with me and giving me some support. It really is nice to talk with someone that understands what I'm going through.

 I am so sorry you are going through this. I know its tough. My grandmother & aunt suffered with Guillain Barre syndrome. Both took about a year to fully recover but were much older than you. My grandmothers symptoms started as she was recovering from pnuemonia and my aunts after a bout of what she thought was food poisoning from undercooked turkey. I will hope for a full and speedy recovery for you. I know its hard to stay optimistic but dont give up now! Keep talking to your doctor and askng for answers. Are their any really good nuerologists in your area who have experience with this?

I have a question for you. For your pain have the doctors tried giving you medication for nerve pain such as Nuerontin, Lyrica or Cymbalta? There are others but I am unsure of the names. This may help alleviate some of the pain. I know it did for my relatives in conjunction with their regular pain meds.

 Also, if you are having mobility issues please keep an eye out for signs of a blood clot in your legs such as pain, swelling, redness, or being warmer to the touch than surrounding areas.