I am in the so-called recovery phase after suffering from a possible case of mild Guillain Barre the middle of June. I know that everyone's GBS is different and so is their recovery phase. It started turning around for me the end of August. I still have muscle twitches randomly which seem to be worse at night, back pain that moves around from my lower back to my shoulder blade, stiffness in my neck at times, less agility in my fingers at times, muscle weakness that improves one day then worse another, numbness or tingling that comes and goes in my legs, and sensitivity just below my left knee cap. I have days with more energy and less symptoms, then struggle other days. But I do notice improvements, like no more burning in my spine and I am getting stronger. I am working and not getting as fatigued as I did. Sometimes the twitching makes me concerned that I have something chronic. I'm just curious about other experiences with this.
You're doing great. If I close my eyes, you are me a year ago. Trust me, it does get better.
All of your symptons are are the healing process in action. My neurologist and my primary care doctor have seen me at my worst and now look at me and say "remarkable". No, I wouldn't win a marathon but I am being productive by working again and working in the yard, driving myself around and all of he other little things that we take for granted. I may never be 100% but I'm going to give it a go. Keep up the good work and we'll have this discussion again a year from now.
I got GBS in Feb of this year...I was in ICU on a breathing machine for 8 weeks,I was complete paralyzed the whole time ,,,From there I went to rehab for 8 weeks ..To learn to walk ,talk ,feed my self and so on .I'm still not driving...My feet hurt all the time, My hands not so bad.. I'm getting there ,slow as she go.....My Dr. said to give it a year and things should be better, I can't wait till Feb next year.....
I was ill in Sept 2006. Paralysed from chest down. Took 8 months to walk again. It sounds like you are comming along nicely. You will probably have some residuals but it sounds like you were fairly mild. You mentioned the peasants. When I was about 1 month in, one or the other of my legs would kick. At one point it happened every minute. I still kick sometimes in the evening (like tonight) every once in a while if I am tired. Considering that I was told that I would never walk again, I am doing well. Working fulltime as a Business Analyst and driving, riding motorcycles and swimming. It takes a long time but it does improve. Hang in there.
I can tell you that it will get better. I had the same symptoms as you have had. I had to relearn everything as well. I still do not drive but that is from my own fears not GBS. I got sick in Nov 07 and it took me a good year to get out of the nursing home I was in. It took me a little longer to get feeling back but by the end of that year I reached my goal. I WALKED OUT OF THAT NURSING HOME. I can tell you that with medications to help with the burning in your feet and the muscle spasms, you will be able to live a good life. GBS changed my life in many ways. The best way was meeting my now husband who was in the same nursing home as I was for something different. My best advise would be to do the Physical and Occupational therapy exercises that you have been shown. If you need a little more during the next year, it is OK. This is not a race but a slow journey.
Good Luck
Debbie from Ohio
My GBS was caught early and I received treatments by the 8th day I first noticed symptoms. I am recovering every day; still can't hold water in my hands but its getting easier to climb stairs. I'm also a cancer survivor, and learned a long time ago that you need to believe that your doctor is a healer and do what they say. My doctor said that my muscles won't develop until heal the nerves heal, to keep working them so they come back asap. I get better little-by-little, and once I realize something has gotten better it reminds me how far I have yet to go. I think it feels sneaky, its a sneaky reminder of how precious life is. AND, it could've been a lot worse.
Hang in there Champ! I read your post and it brought tears to my eyes. It felt like an accurate rehash of my own experience. Please rest assured; the “strange” discomfiting sensations are evidences that nerve fibers and muscle strands are being revived. I spent a month (May 2014) in ICU with near-total paralysis in all four limbs. Today, I’ve eased past spells of insomnia,debilitating aches in my arms (concentrated around the biceps/triceps) and a listing gait to being strong enough to drive myself. I jogged 2 miles three days ago. Please keep working with your physiotherapist on routines that target specific muscle groups; squats are great! Working (flexure and extension)with light weight dumb bells (1-3kg) helped me a great deal in relieving the discomfort in my arms. The ebbing of muscle strength is typical in the recovery phase; it signifies fatigue which ultimately translates to building muscle competence step-wise. If you are walking unaided, please rack up the mileage as this helps circulation to your legs. Finally, work on your mind, always hold a positive mental attitude. Acknowledge and celebrate every improvement, no matter how little. I was barely walking when I left the hospital, now I can outrun my 3-year old son!
I have my GB about 20 years ago - I do not remember real well how fast I recovered - but I did recover fully. Most people do - and you should too. Best wishes to you ... and be patient. Nebretta
Thanks for the replies! Everyone is so encouraging. Was lucky enough to make a 9 hour trip to see my son in college. So glad that I could walk around campus and sit through a great football game. I definitely felt it later but not as bad as I might have before. So thankful! I'm trying to stay positive and will accept the slow recovery and minor setbacks.
Wow scary stuff. Hope by now you are healed up pretty good!
Lisa Cremeans said:
I got GBS in Feb of this year...I was in ICU on a breathing machine for 8 weeks,I was complete paralyzed the whole time ,,,From there I went to rehab for 8 weeks ..To learn to walk ,talk ,feed my self and so on .I'm still not driving...My feet hurt all the time, My hands not so bad.. I'm getting there ,slow as she go.....My Dr. said to give it a year and things should be better, I can't wait till Feb next year.....
Right now both of my legs hurt. As with you I was a mild case. The Doctor thinks I had GBS. I am reading around wondering about the pain also. I just want to make sure its normal and I am not getting worse.
Its been about a month since my last post on this thread. Most of my symptoms are gone except the pain and twitching in my lcalves. I also get random twitches all over my body. Again I had a really mild case. At my worst it was hard to walk and painful in my legs. My legs still hurt. It seems to be getting better. Before my legs would get tired very quick and hurt. Now I can work for hours without them hurting. Like most everyone else I am taking a various things to help speed up the healing process. I just am getting over a mild cold which scared me. I was afraid I was going to have some symptoms flare back up. So far so good. My neuro didnt give me anything for the pain in my legs. I am thinking about finding a different one who knows more about GBS.
TNGBS said:
Right now both of my legs hurt. As with you I was a mild case. The Doctor thinks I had GBS. I am reading around wondering about the pain also. I just want to make sure its normal and I am not getting worse.
Hi TNGBS, so glad to hear you are doing so well and did not have any flare up after the cold! I am going to see someone more familiar with GBS in a couple of months. I'm hope I recover from this flare up soon. It's been tough but I'm hopeful. I am getting my strength back. Hope you can find someone to help with the pain!
You are doing absolutely fine. It does sound a bit odd that you had the mild GBS in June - and in August you are still feeling things. I think I did that after 2 months - but I had a severe case of GBS - paralyzed, but it did not get my lungs to put me on a breathing machine.
Continue to get well. Someone wrote asking what are the chances of a recurrance. I think I read the chances are 5% - really low. Blessings to you that you continue to get well. Nebretta
Well since my cold I just got over no big issues. I did have more twitching in my calves. But I noticed that my left arm from my forearm to my fingers has a numb feeling. This just started today. Not a big deal because this has come and gone over the past two months. But this time I have an additional symptom. My arm is sensitive to the touch. I have read about some peoples experience with this. Kind of feels like a sun burn when I touch it. Just painful to the touch. Very strange sensation.
Hello, my son had a mild case at age 9, a subacute one. The Neurologist, whom we no longer see, says he wished it was acute since it is easier to treat. After 7 months of slowly improving with lots of patience, swimming, therapy and care (and after IVIG in December) he got better, then had a flare up in February on his 10th birthday. We had to wait a month to see a new neurologist, and ended up seeing an hematologist as well. We’re still working together to find out what’s going on. He’s also taking steroids, much to my initial concern. I was scared of them but he’s doing fantastic. About 85 to 90 % of his strength. He was affected only on lower legs, feet, hands and forearms. I do think evyone should see an hematologist since it is an autoimmune syndrome. Hope you’re doing better by now. Take care!
Hi Samarho, so glad that your son is doing better. It must be so hard being so young. Mild can be pretty tough at times. I had a flare up in February too. I'm finally getting my strength back which is great. I'm still not really taking anything but am seeing another Neurologist who specializes in the area in a couple of months. Hopefully I will get a good treatment plan. How does the hematologist help? Just wondered since I had not thought of this. Take care too!
I recovered my body functions quickly but even after a year I had fatigue issues. I am coming on two years and most days I don't think about GBS other than something I had awhile back.
The worst part of the recovery for me was the horrible fatigue. After recovering all functions quickly it seemed like forever for me to get back to normal.
Stick with it. This in time will be a memory for you too.