Getting sick after GBS
February 20, 2017 at 5:23 pm
Hello, I am new to this forum. I had GBS back in August 2015, and it has completely changed my life for the worse. I spent 2 weeks in the hospital unable to get up, walk, or open a soda bottle. I would’ve been out sooner, but wasted 8 days in the 1st hospital because they couldn’t diagnose me. The hospital I was transferred to figured it out within a day and gave me the IVIG infusion. That was frustrating. Now I wonder if I will ever fully recover. I know others with GBS have had more severe cases, but it took everything I loved most in life away, and I don’t think it will ever be the same. I have been passionate about weightlifting for the last 20 years of my life and it was a part of who I was. It gave me confidence, which I always struggled with. I have had depression all my life, but I always had the exercise to help feel better. This kept me healthy all my life too. About 5 months after GBS, I was able to start exercising again, but very light. Over the next 7 months, I started regaining strength and made great progress, but my calves and forearms trailed behind. Eventually I got chronic lower back pain along with other pain whenever I tried exercising, so much that I stopped this past August. Since then, I haven’t made it back to the gym on a consistent basis yet.
I felt my motivation and energy had completely gone away, and my fatigue was getting much worse again. I would frequently get calf and forearm pain for no reason. my depression and anxiety got much worse as well. Looking at where I used to be physically to where I am now depresses me to this day, and I am still struggling accepting it. I also have developed insomnia and wake up in the middle of the night every night, since getting GBS. I am not sure if that is related to GBS?
To an outsider, it looks like I went to the hospital for a serious condition, got 100% better and was able to exercise and then got lazy. That is so frustrating. I got fat because I was unable to exercise and then ate my emotions away. No one seems to realize this condition is very real and won’t go away. Then when people think I’m just looking for pity, it really upsets me because there is so little known about GBS, and I think the only people who would understand are others who have had it. Others have no idea what GBS is like.
So last week I tried to go back to exercise, and of course, I got sick the day after. I think I was already coming down with something, but it has gotten bad. I remember before GBS, that when getting a virus/cold/etc, the worst ones might have made me miss a day of work, but I’d be able to do normal things if I took some medicine and wouldn’t miss more than a few days at the gym. Now, I got this virus last Wednesday and missed the rest of the week at work. My job is not physical either, but my energy was so low. I still feel horrible today. I got sick last fall as well, and that one also hit me hard and took forever to get over. I feel like getting sick is so much worse now than before GBS. I see people around me getting sick with likely the same thing, and they recover twice as fast as me or don’t get sick at all.
Can anyone confirm this? I feel like my immune system is just junk now. Will it ever get better? Will I ever be able to get back to regular exercise without having a huge setback like I did? If I give into believing that I’ll never get back to where I used to be, depression will take over. I’m just looking for hope at this point I guess.
February 20, 2017 at 9:07 pm
Most of us that have gotten GBS continue to have residual side affects from it. It’s a rare and tricky disease to diagnose and, as a result, we seldom get the treatment we need when we need it, and we need treatment immediately when the disease hits. The longer it takes for treatment, the more incomplete our healing often is.
For many of us our poor recovery is the fault of our insurance companies that will deny coverage without extensive justification to confirm the disease. In the end, insurance companies will spend quite a bit more for our on-going care than the money they saved by throwing “not medically justified or necessary” at us when we are first diagnosed with GBS.
I was not given Plasma Exchange (IVIg didn’t work for me) until about four weeks after getting GBS. That delay has left my legs unusable and I must use a wheelchair to get around. My insurance company denied coverage of my wheelchair and I had to appeal their decision through my State Dept of Ins. It took me close to a year to have their decision overturned and my wheelchair paid for.
Like you, I was an athlete before getting GBS. Like you too, I ate excessively too much for my lack of exercise after getting home from the SNF (6 weeks in hospitals, 12 weeks in SNF) and gained over 100 pounds. I’ve lost all that now, but it wasn’t easy learning how to eat without relying on aerobic exercise to raise my metabolism and burn off the fat. I now do 20-30 minutes of upper body weights when in bed in the mornings. Endurance is low, but has gotten a little better over time following more exercise.
I seldom sleep through the night anymore as I had pre-GBS. My immune system has recovered since I’ve been off Prednisone and my ability to fight off colds has improved. Every body seems to recover at a different rate and residuals vary too.
It can take around three years for the body to rebuild itself (as best it can) following GBS. Progress is slow because Myelin can grow back to some extent at the rate of 1 millimeter a day, which is only 0.0032808 ft. This is agonizingly slow but there has been little that can be done to speed up the process, except for the very expensive and experimental stem cell transplant treatment.
You are still in the regrowth stages following GBS. You still have hope that many of the symptoms you are experiencing today may diminish or go away. Try to be positive about your future and don’t expect that all things will get back to pre-GBS levels.
February 21, 2017 at 8:45 am
I can relate to what you are feeling regarding loss of hope. However our friend Jim Is absolutely correct in stating you are still in the early stages and have a chance of a full recovery! I was diagnosed with GBS in December of 2014. Unfortunately, I had been sick since September of 2014. Because of the delay in my treatment, my neurologist has told me I may never regain the distal nerve damage that occurred due to lack of initial IVIG treatments. This disease has taken away everything that is important to me. I have been a seamstress for 30 years but my hands no longer work for me. I was always outside walking or riding my bike but no longer. Every day I hope I will feel more energy ,less pain and depression. I take comfort in the many angels around me, the fact that I am no longer in a wheelchair and most days are tolerable. Please keep on hoping and find comfort in those around you. I have recently gone Vegan and it has helped my inflammation. My sister is an acupuncturist and Chinese herbalist. She believes there is a root cause to any illness so we are still trying to figure out what mine is and fix it! Never stop trying!
February 22, 2017 at 12:56 pm
Recovery can take a few years. The process can’t be made to go faster by exercize. You do need to exercise, but not to the point of exhaustion. You might get back where you were, but not in a short time. In the meantime, you need to make adjustments in your diet to compensate for lower activity. Jim’s advice is always well-informed and sound. I agree with him completely, the only caveat being that every case is unique. Recovery is not the same for everyone. Just try to make a little progress every day.
February 27, 2017 at 4:18 pm
It’s been over a year and a half since getting GBS. The medical professionals kept telling me I could recover fully in a half a year to a year. I get angry thinking about it because I believe they lied to me. I’m not even past my mid 30’s but believe my life is pretty much ruined since getting GBS. Things seem like they will never be as good as they used to. I’ll never be able to do the things normal people do like own a house, have kids, go on a vacation, play sports with friends, etc. I’ve already missed so much. Everything that gave me joy is gone now. Does it ever get better mentally? I feel I’ve been in a deep depression ever since it happened and wonder if I will ever find happiness in life again.
February 27, 2017 at 5:02 pm
It took me a couple years before I was able to have a more positive outlook. Initially I refused to accept that my life as I had known it would never return. Gradually I came to realize that it wasn’t to be and I had to make a new life for myself. At that point I began making plans and started implementing them a step at a time. I never thought I would be driving again because I’m wheelchair bound. But technology changed all that and I now drive by myself all over, I recently logged about 1000 miles on a trip to Sedona.
Start by making a list of the things you would like to try to do. Then tackle each item one at a time listing pros and cons. This gets you focused on some new goals. Now it’s time to do some research and learn more about what options might be available to you. A great way to do this is to attend an Abilities Expo. Perhaps there is one in your area: http://www.abilities.com
I’ll be attending the one in LA in a few weeks. I always learn about new things when I attend. It’s where I learned about what I needed to be able to drive again. Hopefully you will learn some things that can help you envision a better future for yourself.
Oh, and checkout adaptive sports. You might be surprised what you could do sports-wise. I won a wheelchair tennis spectator target practice challenge in 2015. Gonna try again this year!
March 14, 2017 at 11:20 am
Thanks for the help and encouragement, I appreciate it.
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