GBS for a little over a year, Health probs in a nutshell.
AnonymousApril 28, 2011 at 3:04 pm
I was diagnosed with swine flu February 2010. My immune system is now toast and I am really concerned. I now have GBS, Guillain Barre Syndrome from the swine flu infection and I am 40 years old. Nobody understands how grateful I am to be able to walk, let alone type! Do a search on GBS, it’s nasty to your immune system plus I have tingling in my hands and feet, like when your leg goes to sleep, pins and needles really bad some days. If you stumble across swine flu info send it my way. I got this years Flu (2011), from soar throat to full blown pneumonia in 3 days it hospitalized me. I was in St. Claire’s Lakewood WA for a week just over the damn flu! I been out of the hospital since middle of March. I moved to Huntington Beach CA to get into warmer weather because if I get sick I could relapse into a coma or be paralyzed. Yesterday I painted an accent wall for my friend here in Huntington Beach and I feel like I painted a whole house. The good news is that for once I am grateful to be alive and don’t want to waste anytime enjoying the little things. Feb. 2010 I woke up in Tacoma General Hospital paralyzed and on a mechanical breathing machine. Apparently I was in a coma for a week , then I was paralyzed for a week ( I had to answer questions by blinking) I had to relearn how to walk and write plus I had amnesia! It took me 3 months to be ok mentally but I probably will be weak forever, I can barley crush an orange with my hands and I currently walk with a cane. Doctors said after a year of recovery this is the best it’s gonna get. I think everyone that is a depressive suicidal person should have a near death experience that you have no control over, it sure changed my outlook on life. I wanna live! And I am grateful for all my friends and the things we did, good or bad. I am now filled with love for all. I just wish I didn’t hurt so much physically, but at least I am alive and can sit in the sun 🙂 Any advise is welcome PLEASE! -Gunnar Cole 2011
AnonymousApril 28, 2011 at 3:58 pm
Every case is different, for sure, but there are a lot of people who have had some improvements years after the onset of GBS. I am one of those. I have really spent lots of time rehabilitating but progress has been very slow in some areas. Just to give you one example, I have been doing this video exercise that has lots of balancing positions on one leg – very low impact. I started doing this in October 2008 and it honestly wasn’t until about two months ago, when this became easy for me to do with my right leg (my left leg was able to do them more than a year ago). I’d have bet a million dollars it wouldn’t have taken so long if someone bet me 2.5 years ago. But that is what happened. Many of my recoveries, like walking without crutches, and walking normally, also took lots longer than I could imagine. So while I don’t want to raise your expectations unrealistically, I don’t think that in most cases, progress only occurs in the first year.
AnonymousApril 28, 2011 at 4:49 pm
Today is my 4 month anniversary with GBS. I think that my recovery has gone pretty well but I am not close to 100%. I started kayaking again and yesterday I took my long board down to Newport Beach and paddled around for about 30 minutes. LIttle things like loading and unloading my kayak or carrying my surfboard just wears me out. I still have weakness in my hands and ankles and tingling in my feet. FreakDog, I live in Costa Mesa so if you would like to talk send me a PM and I will give you my cell number.
AnonymousApril 28, 2011 at 5:14 pm
Keep in mind that many people say GBS actually stands for Get Better Slowly. It takes awhile but I have met people, in person, who have had full recoveries. One woman was in a rehab facility for 18 months & 15 years later she’s perfectly healthy w/no residuals.
Are you doing an physical therapy?
AnonymousApril 29, 2011 at 8:42 pm
I did physical Therapy but I never got stronger so they just told me to keep it up, I graduated Seattle Massge School in 1997 so I do know about exersie but man I have no energy….to make matters worse I woke up today with a sore throat and now I got diareahh I think I picked up a bug in the last 24 hours and that might mean hospital in 3 days agian, argh!
AnonymousMay 1, 2011 at 7:24 pm
I am sorry to hear about all the grief that GBS has caused you. I had GBS in 2002 and although I am not an expert on it, I have learned a few coping strategies.
As for physical therapy, GBS is not like a muscular problem. Your nerves are doinked and exercising past the point of fatigue may actually make things worse for you by causing additional nerve damage. Your nerves are working extremely inefficiently and hammering away at exercise is not going to change that. Most physical therapist believe in the no pain, no gain model but that just doesn’t make physiological sense with GBS. The rule of thumb for GBS is that if you cannot fully recover from any activity after 12 to 18 hours, then you are doing harm to yourself.
In your original post you said that your immune system is having problems. Your immune system actually is the problem. GBS is an over-reaction by your immune system. For this reason, you may want to consult a doctor before you try anything that claims to boost your immune system. Your immune system is boosted high enough already. People with GBS tend to have problems with pneumonia because they aren’t breathing deep enough because of nerve and muscle problems. This will probably go away soon enough.
Finally, because of fatigue problems, I found it is useful to keep an energy budget. It is like a ledger where you get credits for rest and you take out debits for energy you use up. I found that the act of keeping an energy budget kept me in better touch with my body and the effects different activities had on my energy levels. For example, I found that going to a mall for an hour was just as exhausting as digging a ditch for an hour. I also found that if I was on the negative side of the budget, that I had to schedule rest. I don’t think there is a one size fits all energy budget, but it is important to start to monitor these things. After a few months, I discovered I was keeping the budget in my head instead of writing it down, and it worked out just as well.
Gunnar, I want you to know that you are not alone with all of this. We have gone through much of what you are going through now. We are on your side.
Take excellent care of yourself,
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