Recovering from GBS, highs, lows and confusion
Posted , 7 users are following.
I was diagnosed with GBS on July 19 and spent a week in the hospital. I had a mild case, only affecting my lower extrmities. By August 10, I was walking pretty independently. My gait has improved with PT, but the sensations in my legs seems to change. Some days they feel like they're getting better, some days they are worse. They often feel large and swollen, but they aren't. My ankles feel like there are rubber bands on them. My doctors think my recovery is "remarkable" and this feeling will gradually subside. I'm going back to work Tuesday, excited and anxious. Has anyone else had these sensations?
0 likes, 20 replies
marilyn_48 chris43753
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chris43753 marilyn_48
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Yes Marilyn, I know that feeling. I think the road is winding but there will be an end, so they tell me. Right now it's my new normal.
jillyjmc chris43753
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Always good to hear of recoveries.
I have to say I relate so to you Chris & marilyn
Been going on far too long.
But am greatful do the episodic nature.
Relapses for me are getting worse & the recoveries are more & more incomplete.
I am not diagnosed as such ,which pains me in a different way and really doesn't help.
and am considered complex .
Labled vaguely with Neuromuscular disorder
Can I please ask what is done to diagnose GBS.
I have been told i have issues with motor neurons ..bit lots of thoughts are expressed and no real ..diagnosis.
I am complicated by epilepsy & RA...
The muscle weakness is a real problem and I am needing hoisted to the bathroom most mornings.
I am worse mornings my body simple won't function at all.speech also.S one I!prove meant as day goes on but not completely. I get lot of pain at night.
..In all honesty I relate to GBS and am considering asking for whatever test to ...check. I will be relieved to exclude it but not surprised to confirm it of that makes sense.
chris43753 jillyjmc
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jillyjmc chris43753
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Thankyou chris, Neuro reluctant to do spinal tap as I have a Arachnoid brain cyst also. But I would go for it. If option came up.& It was going to be helpful. I am going to ask forall GBS testing ,but I know they will most likely ignore me.
chris43753 jillyjmc
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subrata_67534 chris43753
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jillyjmc subrata_67534
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Thank you Sunday, I am actually waiting that.
Do a lot of Waiting here in Ireland for such tests if you don't have private insurance.. But I will try prompt it forward.I am to have a nerve biopsy also. Is this all on the right road?
jillyjmc
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jillyjmc
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chris43753 subrata_67534
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caroline35406 chris43753
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Further information on recovery can be found on the Guillain Barre and Associated Inflammatory Neuropathies website www.gaincharity.org.uk
Tarhealing chris43753
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I am 2 years out from what was believed to be a milder case as well. PT helped me tremendously too. The sensations in my legs changed too so don't get too discouraged when things seem to be worse. It was like a bouncing ball. As I overdid things, it would be worse then it would get better but all the while the ball was bouncing lower and lower. Work was tough for me because I have to stand all day. I would work a couple of days then spend the next 4 trying to recover for the next work day. PT in between helped. It got better with time. I think it was tough to push myself but helped me recover quicker. It's hard to stay positive because it's so great to have a good day but so tough to tank from doing too much. That seems to be nature of this thing so keep at it and forgive yourself when you falter. The sensations I thought would never go away, finally did. Still can tell at times but it is so mild now and sporadic if at all.
chris43753 Tarhealing
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Thank you for your reply. My emotions are up and down as well. I was the healthiest person before this happened, crossfit every morning, rarely sick. I don't have a lot of patience either, at least when it comes to healing. I've read things like "If things don't improve in a few weeks it probably never will.". But most other things have been positive. Thanks for the nugget of encouragement.
Tarhealing chris43753
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I was a marathon runner hoping to qualify for Boston. I had just run the Cooper River Bridge Run with an 8:31 min/mile pace two months before. I was running 6 miles a day about 5 days a week and working out with weights 4 times a week. I had no patience either. I was used to giving myself a few days up to a week for recoveries then building back again and accomplishing goals. This really sidelined me and has been hard to accept. I had the whole "you look too good to be sick thing." It's like being in shape helped me in recovery but hurt me with a medical viewpoint. It sounds like your medical care has been supportive. I gave up on some of my past goals with running but now am getting to look at them again. Be careful as you go. As soon as I could do more, I did, then I would backslide a bit and get discouraged. These nerves amazingly can regenerate. They don't seem to be exactly like before but pretty close. It's very encouraging and I would have never imagined that I would return to running and working out. I wish someone could lay out a plan for recovery but I don't think they really know that much about it if they haven't experienced it. It's been a learn as you go kind of thing for me but looking at those ahead of me in recovery has helped so much and continues to. I bet you will return to crossfit. It will take patience and a slow building back. I've had to strike a balance between healing and pushing myself. I listen to my body and back off when it's not responding right and forge ahead when it does. Good luck to you! Can't wait to hear when you get back into it.