HI everyone, I am very happy to now be a member as my husband and I have a lot of questions. One of our biggest questions is if the recovery for this is continuosly supposed to slowly make progress or if people have set backs frequently. It seems like my husband takes 3 steps forward and 1 step back all the time. Is that normal? His latest issue was a severe episode of Gout 2 weeks ago in his left foot. He recovered from that but felt now his legs were more painful and stiffer than prior. Now yesterday he started with an episode of Gout in his right big toe! Although Gout was an issue for him prior to GBS a couple times a year, I wonder if all the inflammation in his body is just triggering it? Anyone else have this problem?
I personally didn’t have the gout problem but I did suffer from setbacks. Looking back I realize that the setbacks came after I’d tried to push myself too hard. The physiotherapists warned about this all the time but I was desperate to try and prove that I was beating GBS! The best advice (I wish I’d heeded myself!) is to not push too hard and remember that rest is just as important in the recovery process as excercise. Celebrate the small successes. Lots of luck and best wishes to you both. Linxx
The exact same thing happened to my husband. He was just beginning to try and walk with a walker when gout popped up in his left foot. At the time we weren’t sure what was going on and it was a bit unnerving. We happened to have some old gout meds around so I gave him one. I left to run an errand and by the time I got back, he felt better. It is funny now, but we were so relieved that day that it did not appear to be a relapse. There were several other episodes of previous ailments rearing their ugly head, so yes, I believe that the GBS or possibly the IVIG purges their systems of other impurities. Not a Dr…just my opinion. We are 14 months into recovery and there are still times of three steps forward, then two back. They do seem to be further apart now and still slowly improving. So continue to stay positive and have faith!!
I had 2.5 solid months of steady continuous recovery, after that it’s been advance and retreat. I think overall I gain ground and the net effect is incredibly gradual improvement.
What you have described is exactly what I experienced, though not with gout. I have had recurrent styes in both eyes that keep coming back, I haven't had one of them since I was a child then all of a sudden I've had about a dozen in the last 12 months.
Every time I get sick (e.g. with a cold or virus) my symptoms flare up, the main one being pain through my feet and calf muscles, back ache and general lethargy. Once I recover from the illness the symptoms have always (so far!!) resolved themselves back to my current 'normal'.
3 steps forward and one back is great, I spent my first 12 months going round in circles! I'm at 18 months now and making much better progress.
I was told 4 years prior to G.B.S. I had R.A. now the pain is ten times worse. I am 2 years into this crazy syndrome or what ever the call it. well wishes to your husband. and stay positive.
All this will keep happening : the main Mantra for GBS is Patience : every patient has different levels of improvement : some come out faster dime take more time : but I’m sure very sure that We Will All Make It : remain positive : stay blessed
I did not have gout. As the fellow members always say that other medical conditions and recovery is usually different for everybody and I believe the severity of GBS determines this. Gout has affected my prior to GBS but taking anti inflammatory tablets did the trick.
For me the gym has been a great help in building up my body and since being discharged from hospital in February this year I am just now able to swing a golf club. If he can get to the gym for gentle exercises, it will help. Good luck.
I’m just three weeks into my recovery in training and already experiencing the one step forward and one step back. The feeling of relief when I read that others are also experiencing this is wonderful. In my country, Denmark, only 50-75 people get this disease a year so even the physiotherapists don’t really know what to expect from me. I am so happy to have found this group!
u shouldn't have gout if u take your pills all the time. I should know. by the way I don't take my gout pills all the time. and after my bout with GBS in last oct I haven't had gout fare up on me yet
The tingling in my hands seems to be getting worse. I don’t know if this can happen or I should do something about it. I thought that after the immune plasma treatment this stopped. It could be my imagination also.
The tingling I had would get better then get thenn
Sorry then
It’s 3 am here so I’m going back to sleep now. Be back with you tomorrow. Good night.
So sorry I try to finish and then get worse if you have concerns callyournero no guest ion is to crazy better safe then sorry
Thanks Kel.
hi
i get numbness still in hands and legs,special when i sleep ,and when i cross legs or arms,and tingling .
But the fatigue is bad and have to rest ,its 10 months ago since i got GBS,and i have recovered very well .
But the most impotent is to stay active every day and work though that pain .
Hi Gitte,
Your comments calmed me down so much. I sometimes feel that nobody believes me when I say I’m so tired and I’ve only had this disease a few months.
The good news is that I have been excepted to come into a rehabilitation hotel and will probably spend around five weeks there was a lot of training which I hope will get me on my feet. The good news is that I have been a accepted to come into a rehabilitation hotel and will probably spend around five weeks there was a lot of training which I hope will get me on my feet.
Sometimes I have some aches and pains and sometimes I don’t is this normal?
I am finding this dictation button on my iPad a godsend.
I am 11 months into this. After 8 months and a pretty good recovery, I had a reflare after a sinus infection and am still trying to recover 3 months later. Both times, I had the 3 steps forward 1 step back. It's always so hard because I love feeling normal without the constant reminder of how debilitated I can feel inside. I have aches and pains and sometimes I don't. I had the burning pain at my worst point but that got better with time, stretching, and physical therapy. At night and sometimes during the day, I have fleeting pains that come and go. Some pain will stay at times. I think that I get tight at night because after I'm up moving around I get better. It's so weird that way. But if I overdo it, I will be more tired during the day and the nerves inside my body will be so active at night. This never happened to me before June 2014. Sleep was peaceful. I can still sleep though because I have learned to roll with the wired nerve activity, bizarre twitching, and random pains. I am getting my strength back and I think recovering again but this crazy nerve feeling is almost everywhere now. I am taking a low dose of Gabapentin at night (200 mg) and that has actually helped me tremendously. I'm still trying to understand all of this.
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I am 11 months into this. After 8 months and a pretty good recovery, I had a reflare after a sinus infection and am still trying to recover 3 months later. Both times, I had the 3 steps forward 1 step back. It’s always so hard because I love feeling normal without the constant reminder of how debilitated I can feel inside. I have aches and pains and sometimes I don’t. I had the burning pain at my worst point but that got better with time, stretching, and physical therapy. At night and sometimes during the day, I have fleeting pains that come and go. Some pain will stay at times. I think that I get tight at night because after I’m up moving