I was diagnosed with GBS a year ago (Aug. 10, 2013). I was wondering if there was anyone else out there like me. I will be 50 years old in a few months and when I was diagnosed with GBS I was also going through menopause. I have made great progress and I believe after one year,but there are still some things that I struggle with. 1)I still get extremely exhausted after doing things that I use to take for granite (walking for a long time, flying to another sate for a funeral, and standing to make dinner).2)I still have a lot of pain in my hips, knees and feet. (mainly my left side).I’m currently on synthoid (for my thyroid problem I have), Lyrica, Morphine and some other medicine for seizures (which I have to take now do to having one after I already had GBS). The doctors now tell me that I have some arthritis in my left big toe, back at the L4/L5, could possibly have it in my knees but not enough to be making me have so much pain and weakness. I still walk with a cane and I’m not sure if it’s out of necessity or security. I only had GBS up to my waist and in my arms (never placed on a ventilator). Is there anybody else that after a year that did not have it really bad still suffering from pain and exhaustion? If so how do you explain it to your spouse and others who think you should be back to your old self by now?
Hi Deborah,
You are fortunate that your case did not include complete paralysis and ventilator support. Your doctor should make it clear to your husband and/or others that recovery from this is SLOW! Regular exercise will help, but easy exhaustion is one of the hallmarks of GBS recovery. Be careful not to push yourself too hard, over-doing it is really easy to do. Walking s a major drag (for me), I recommend cycling -- much easier on your feet! The doctor told me I have arthritis in my back as well (which is why, he said, that it took 3 attempts at the spinal tap before he achieved success), but regular exercise helps with this also. Do something every day, even if it's only for 10 or 15 minutes, you will feel way better if you do.
Good luck and let us know how you fare!
Hi Deborah,
Our cases are not too dissimilar. I had Miller Fisher variant of GBS June last year, when I was 50. Miller Fisher causes ataxia, double vision and lack of reflexes. These three 'classic' symptoms of Miller Fisher had all cleared up after about three months. I had a mild case and remained (clumsily) mobile and was never on a ventilator. But the severity and longevity of the fatigue seemed out of all proportion to the mildness of the initial symptoms. The fatigue is still there, though nothing as bad as the beginning of this year. The neurologist I spoke to in London told me that a year was the time to wait before starting to get back into condition again. I explain the situation to family and friends by referring to what I have read in support groups accounts by others with similar situations.
My daughter is 18 months on and still gets seemingly random pains all over her body for short periods of time - maybe an hour- but this is usually when she’s tired or worried. The only solution I have found is to ensure rest time and to keep a diet full of fibre! Not sure if that’s connected but constipation has become a regular problem.
Good luck and good to share experiences.
Hello Deborah,
57 year old male going on one year also. I echo what everybody else has said, this does take a long time to resolve itself. I went to the MAYO clinic and one of the things I was told was that it hasn't even been one year yet since I contracted GBS, why am I worrying about how slow recovery is? They were not really warn people; neurologists do tend to be a quirky lot. I was prescribed warm water therapy and that was a very good thing for me. One of the things I was told was that fatigue is a very big issue.
This link describes what we are going through in a very succinct manner:
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Explaining the spoon theory to those around you can help them to understand what you're going through.
So after one year for me, the pain is worse. I constantly feel burning in my arms and legs and sometimes torso, My feet always feel like I'm walking barefoot across a gravel driveway. I occasionally get sharp stabbing pains anywhere on my body, and will always feel like I'm getting bug bites. I may feel good for an hour or two, but then fatigue sneaks up and smacks me across the face like a wet sock. Then I must crash for awhile, sometimes hours, sometimes the rest of the day. Because I can be up and around seeming healthy, people will say to me how good I look, and how I must be getting better. The fact of the matter is I am feeling worse now than I did year ago. If I am out and about, I must use a walking stick that allows me to ease the pressure on my feet. It also helps me with balance. The Mayo neurologists said that GBS can exacerbate the onset of arthritis and carpal tunnel syndrome, and other issues. I have read here that many of us have experienced the joys of arthritis.
I did not have a severe case and was not paralyzed, But I did lose all reflexivity in and feet. Mostly I was just experiencing pain. I am now on lyrica and will also take Vicodin as needed. However with all medications there can be side effects, and I certainly am experiencing them. Common side effects of Lyrica include dizziness, drowsiness, dry mouth, edema, blurred vision, weight gain, and difficulty concentrating. I hit the jackpot, I get to experience them all. I even started menopause. Kidding ;0)
Exercise is crucial, but take it easy on yourself; you won't be able to do what you used to do. I have always loved walking and could be on my feet all day long. Now my feet hurt all the time, and a walk around the block is about all I can handle. But, I can swim and bicycle! I just have to be careful and not try to overdo it. For someone whose motto has been "Anything worth doing is worth overdoing" it can be frustrating.
So, my advice to you would be to be kind to yourself, let your self heal. People around you mean well, but they really don't know what you're going through. Explaining the spoon theory to them can help them understand though. Be patient and love yourself, and every day do something for someone else; it does wonders for ourself worth.
Hey Bergeroo,
This: "The Mayo neurologists said that GBS can exacerbate the onset of arthritis and carpal tunnel syndrome." I had not heard that before, so that explains why I now get muscle cramps in my hands, that I never used to get.
Thanks!
Yeah, kind of weird isn't it Lance.
This is all very scary. I was diagnosed in just over a month ago, and treated very early on (by day 8 of the first symptom). I am so lucky! Its still pretty slow getting my muscles back, as the nerves are still mending. I've read that writing in long hand and drawing help the nervous system; I'm taking B complex, lecithin, alpha lipoic acid and coq 10, and doing pt. My right hand can draw with sensitivity, but my left hand often shakes if I enlist it in any task, and the pinky finger would rather not join the others. It hurts most of the time. I sleep more than before, but I figure I'm on the mend.Thanks for the links, I'll check them out.
Hi I am 59 and new to this site having stumbled upon it while 'Google-ing' GBS and have found it amazing. I was diagnosed with GBS the beginning of Nov 2013 and am still recovering. I was hit hard and fast with only a week from first tingling in fingers and toes to ICU paralyzed in all areas but lucky enough to keep breathing on my own - just. The recovery was long and arduous but I am nearly there - I feel about 85% back but now I feel like I am stuck in limbo it is so slow the last part. The worst of it is the fatigue and to add to it I cant sleep either. I have been seeing a psychologist about it all as I am having trouble coming to terms with this last bit of it. It has helped heaps in reading your articles and replies as I feel I am normal for a GBS sufferer now and not on my own. I am not the only one with the pain and exhaustion. I had never heard the spoon theory before but it fits the bill so so well. Thank you so much for linking it - I will definitely be getting my friends and family to read it.
It’s sad. Nobody understands. Iam 55 I got it in may, was told hormons play a big part in it. I also have a thyroid problem. Everything I had before GBS has worsten. I was a runner rode my bike. Walked even had a horse. My hips hurt feet legs. My hands are the worst. The pain is horrible I wear gloves at night on my hands just do I can have the air on. :). Hang in there. From all the wondful people on this support site it’s gong to take time 
My daughter was just diagnosed with this I have no idea what to expect . Kinda blindsided shes only 22 and in perfect health . Very fit etc so was last thing I expected . Been reading keep getting more scarred,
Nathan,
So sorry to hear about your daughter. You are right to be concerned, but try not to be frightened. Your daughter's youth and level of fitness will help her in her recovery. This will be, to a certain extent, a life-changing event (but every case is different). Be prepared to spend a lot of time at her side, providing moral support, which will be very important to her. If her diagnosis was early, and treatment begun early, her chances for a complete, or near-complete recovery are very good. It will take time. Be patient, and try not to expect improvement along any particular time scale. It takes a long time for nerves that were damaged to heal again.
Good luck, and keep us posted!