i cant run i have constant nerve pain and my legs are weak very frequently but also i had a severe case of gbs
Guillain-Barre Syndrome - hey anyone have overall lasting effects from gbs other then me?
- 27 Apr 2010 by gothdude4ever
- 3 July 2018
My sister in law is still dealing with nerve pain she had gbs last year in september she is barely recovering. She is trying to work out but when she does her legs are very wobbly after and has difficuly standing. She almost didn't make it the gbs was starting from the feet up to her head it stopped about the head. I know a doc of my husband's said he had a patient that could only blink to say yes or no the rest of his body was dead. Gbs is a very serious disease and we were told it could effect her for a lifetime. Try before you go running taking one of your pain medication's that way the pain isn't as severe. Hope this helped you.
It is now 2017. Wondering how you are doing? I was hospitalized in Jan 2010. Spent 9 months on ICU on a respirator. I was totally paralyzed , could not even blink, upon admission. I experienced unbearable pain and although could not communicate, I was aware of all that was happening. It was hell! Today, I use a power chair, wear AFO's for foot drop, can step short distances with a walker and have claw hands. (fingers clenched). I have many residual effects, mostly in the former of flu like symptoms, and the worst being the overall burning nerve pain. I have been told GBS is very rare and EVERYONE has Complete recovery lol. Six people were in ICU with me with GBS. Mine is reported as a result from the flu shot. Regardless of what the source, I just hope there will be more research into this horrific life changing and life threatening disease and that more people become aware that it even exists!!! Caring thoughts to all GBS survivors. I really DO know how you feel!!
Two years ago I was watering my plants and was bitten several times on my stomach by a spider. By the next morning I knew it was not a mosquito bite, I believe the bites came from a spider. The area where i was bitten became severely red with hardness. The pain became unbearable in my stomach by day three it felt like someone was twisting muscles in my stomach. It is believed to have been a black widow spider. I was given antibiotics and continued to get worse. I screamed from the pain. Day four, I started having severe pain in my low back right around my kidneys. Soon I had to have help walking it was as if my legs would not hold me up. Next morning I got up tried to walk and my legs went out on me and I fell. Went to ER and DR seemed lost for what my problem was and I returned home. My legs became weaker and this time my daughter took me to family doctor. They knew something was wrong but just didn't know my diagnosis.
I was being sent over for testing at the hospital as I was leaving my legs gave away on me again. I was put in wheelchair and from ER admitted. I didn't become paralized but I couldn't walk my legs would not hold me up and by now I couldn't sit up without falling over. The neurologist said, the spider bite had attacked my nervous system outside the brain. I didn't know if I would ever walk again but after being in the hospital two weeks and rehab for three weeks I went home on a walker. GBS was my diagnosis. I have not done well physically since I was strickend with this horrible syndrome. My legs and arms feel tingling, weakness, trouble keeping my balance, pain in my legs, as well as the bottom of my feet. Extreme fatigue but my biggest problem is the pain in my back which radiates around my ribcage. I was diagnosed with fibromyalgia before GBS. I am discouraged.
I had GBS in 1985, started at feet, went fully to head, every muscle in my body atrophied and I ended up completely paralyzed. I was an athlete prior but this changed. Today, I have four issues I have faced continually. 1) Body Thermostat - I am almost always warm or hot and sweat a lot. 2) Foot pain and aches. 3) Loss of balance, not debilitating but no able to walk across planks or boards since. 4) I really struggle to lose weight, I can gain it fast but not lose it. Anyone else with any of these?
I had GBS 45 years ago when I was 7 years old. The worst mine got was complete uselessness of my legs. Bless the Shriner's Hospital for figuring out what was happening almost immediately. (And bringing Christmas cookies and holding wheelchair races with the kids stuck there through Christmas.)
Anyway I was 48 years old before I found out that not everyone feels like their feet are going to ignite whenever they walk more than 100 yards.
So yeah, you aren't alone.
I was diagnosed with GBS in 2002, I was about to enter my final year of University. For me, it started with a viral infection (we think), but it has been suggested that many people my age with GBS have had it linked back to past booster shots. Not sure. Nonetheless, after several trips to the doctor and ER I was finally admitted as we could not get my fevers under control (I had mono). The 1st clear sign that something more was going on was due to my inability to urinate. I had the sensation, but could not go. It was just minutes later I went to walk back to my hospital bed and my legs gave out. Fortunately a neurologist out of Toronto was contacted who almost immediately diagnosed me via phone and ordered the hospital to begin treatment for GBS. In the end, I was in treatment for a few days and during this time, completely despondent with breathing complications. My vision was also effected. The treatment (thank goodness) was a success though.
Essentially the primary residual effect was my inability to walk. Fortunately through months of rehab I was discharged and sent off to start my new "normal" life. I could walk, but still a little shakey for about 1 year after rehab. It is now 2018 and I am 37 years old. Overall I am in good health, but still have leg cramping some times at night and this urge to constantly stretch my legs when in bed (annoying). I also have the bladder of a 100 year old woman! Could be due to the nerve damage that was done (that's where the GBS started, in that area anyway) or the long-term catheterization. Not sure. Moreover, for an active young woman, I get sick more than the average person (strep throat, upper resp infevtions). I also recently developed a heart condition. Not sure if any of this is directly related back to the GBS, but sure wish there was better documented research into the longterm effects of GBS. The best advice I can offer anyone who has had GBS and still has mobility and is to really push yourself with activity. Keep moving! We have even more reasons to make physical activity an important part of our daily routine. Whenever I keep my myself active, I notice that I sleep better and have less leg cramping. All my best to all of you!!!
Came down with West Nile that turned into GB. Hospitalized 9 months, also nursing home. Paralyzed from chest down. 3 yrs later, I am walking short distance. Have feeling of gel & rubber bands, paper clips on feet. Severe pain. Can't run. Hard to bath & dress my self. Why is it that the doctors don't understand pain. Quality of life is zero. Grateful for emotional support dog. Will it always be this way? Anyone else have sensation with feet & legs?
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