My back has been burning for the past two days and seems to be affecting the strength in my legs. During the night my toes went numb. I saw my rheumatologist yesterday and he said I would have ups and downs. I just wondered if anyone else ever experienced this kind of down. It's hard to continue my regular life when my body won't cooperate.
Severe back pain has been one of the worst parts of GBS for me. It was unrelenting during the acute phase while I was in the hospital and has been a major part of my life ever since. I have noticed that I am starting to have more good days and shorter down times, but it’s a long ways from what I was before GBS. I basically have a new “regular” life now and I’m trying to find ways to do what I need and really want to do without causing too much downtime to recover. Best wishes to you!
Hello Tarhealing. My son had a really severe bout of GBS last year, but he seemed to have completely recovered. Recently, though, he woke up with paralysis in one foot. Scary time. Thankfully it resolved after a week or so. His neurologist said this can happen in pretty much any part of the body after GBS because the nerves get too irritated. Unfortunately, it is much easier to irritate the nerves after GBS. The good news is that the problem is usually short term. Anyway, he is, once again, pretty much back to normal. Hope your back, legs and feet calm down.
Hi Mamabear! Is he active physically like play sports, run, etc? Just wonder about recovery with that.
Yes, he is really active. He had just turned 18 when he got sick. He was in great shape then (just finished football playoffs). He is 19 now and does not play football anymore, but he is lifting weights again and he is back to his old numbers. He is also playing some rec. baseball, volleyball, boxing (really just hitting a bag) and whatever else comes along. He said he is not quite as comfortable as he used to be with running because the tingling in his feet sometimes comes back. But he was never really into running - it was just part of his conditioning for other sports. Anyway, he says it is not so much that he is worried about tripping, it is more that the tingling reminds him of the GBS and he does not want to be reminded of it.
Mamabear, that's so encouraging! I'm glad he is doing so well. What was your son's recovery like? Was it a long process?
Don’t know enough about your situation, this is how my GBS started and I was eventually paralyzed from waist Dow. But am now walking. Get proper diagnoses and treatment ASAP
I am so glad you found my post encouraging. I remember the days where we thought we were going to lose Andrew. After that we worried he might never be able to use his hands again. Then we feared he would be confined to a wheelchair. It was such a dark time for all of us but it did get better. I want people to know that no matter how bleak things look now or how many setbacks you have, almost everyone gets pretty much back to normal.
Andrew's recovery - in hindsight - seems to have been quick. He went from complete paralysis to being able to feed himself, get into a wheelchair, dress himself, etc in about two months. It took another three months for him walk without crutches. He got sick in January 2013, and missed the entire last semester of high school. BUT in May 2013, he walked across the stage completely under his own power to get his diploma!!!! It was incredible.
I am not sure how typical his recovery was. He was pretty young to get GBS (18) and was in excellent physical condition when he got sick, both of which really helped in his recovery. He worked really hard at PT, for about a month as an inpatient at a rehab center, and then as an outpatient 3x a week for about three months. He treated PT like a job, really focused on it. Sometimes he worked too hard and had setbacks. One time he actually passed out, which set him back at least a week while they checked him out again. A few times he just wore himself out, which set him back too. He had to constantly monitor his heart rate and blood pressure and stop whatever he was doing if it got too high.
It took six months for him to be cleared to drive again. At a year he started doing his old workouts and he no longer had to worry about his heart rate and blood pressure. And as I said before, he is pretty much his old self again.
Hope this helps!
He came so far, so fast with his recovery! I had a "mild" case in comparison but it feels so major when you have any form of this hitting your body when you were clicking along in life so fine. I was running marathons and races throughout the year. I was in pretty good physical shape for a 48 year old. I am so eager to get on track and have found myself suffering setbacks as I over push myself. The scary thing is that you never know if it will last or go away when things flare back up. I hate any symptoms that remind of that time because I fear a relapse that might leave me permanently disabled. It's like I've always known my limitations until now. I started PT last week and am ready to get going with it. I'm signed up for twice weekly for the next month in between the days that I am working. They are helping me stay in a routine of the right amount of workout for recovery to help minimize the set backs. I want to sign up for a race but the truth is that I could not even walk a 5k right now but I am happy and thankful to be walking and running a little. I am glad he is doing so well!