Residual effects of GBS
April 24, 2018 at 1:54 pm
I was diagnosed with GBS around 3 years ago. That was life changing. The doctors told me I could get back to near 100% back then, but I now do not believe that now, as I am not even close. Can GBS come back again? There are days I am very shaky and weak, and sometimes if I’ve been in bed for a while, when I get up it hurts a bit and my lower legs are very stiff, so I have to take baby steps until I loosen up.
I also have extreme sweating issues which have only gotten this bad since GBS. Even in temperatures in the low 60s, there are times I sweat all over and drench my back, waist area, head, and face. This will happen when I’m doing things that require little to no physical activity. I was vacuuming for example, temperature was mid 60s at most, and it was like I had run a marathon. I get out of breath so easily, even from just walking from my car into work and coming down an elevator. Little things like bringing in groceries from my car cause that also. I also wake up almost every single night in the middle of the night, and this has been happening since GBS. Iam at a loss with getting help from doctors. My doctor seems to think a lot of my issues are due to my weight (I’m overweight but definitely not obese). I highly doubt that is the sole reason for this. I had the same issues before I got heavier, and I only got this heavy recently because I have not been able to work out. I’ve also known people much heavier than me and none have had these issues.
I think my issues are all due to GBS. I am worthless because of this. It is getting near summertime, and I cannot even do anything outside because I sweat so horribly and get out of breath so easily. I have to sit inside one room by an AC unit the entire summer. My doctor cannot find an answer to this. The last time I saw a neurologist, he thought I was fine because my strength was apparently decent enough at the time. I wish I would’ve seen him on a bad because there are days I am weak and very shaky. He did not have an answer for the sweating/overheating and the shortness of breath.
I’m not sure if anyone has any similar experiences like me, but my whole life has been turned upside down, I’ve missed out on doing so many things, and I’ve lost a ton of friends because of this. Some friends they were huh? I feel like I am not able to and never will find success in life, let alone ever own a house or have kids or anything normal happy people can do. I don’t know who to talk to about this, as all my “friends” and even most family have given up on me, don’t understand GBS, and have left me. It also affects me in public or at work because no one understands GBS, and it can be invisible. So I just look lazy taking the elevator or using a handicap space, even though I need it. I’m sorry, I’m just really frustrated and down about this and looking to see if anyone has had any similar issues. Thanks.
April 30, 2018 at 8:10 am
JIM_LA gave some links in his 2015 reply to a similar question:
True, it is difficult for Family and Friends to truly understand this condition. Sadly, we have probably all experienced this lack of empathy.
Moreover, everyone deals with the typical feelings of denial, anger, bargaining, depression and acceptance. Focus on the acceptance. Wallow in self-pity at your own peril.
Find a support group and some different doctors. Good luck.
July 10, 2018 at 3:00 am
You are describing heart problems. Has you heart been checked out?
September 18, 2018 at 10:50 pm
I’m sorry you are going through this . As I was reading it felt like you have mostly all the symptoms I stayed withome. I had gbs 2 years ago and my neurologist had told me I would go back to how I was . I’m still waiting. I’m frustrated because this is not like me at all I feel like I just can’t get out of bed or want to do anything anymore . I clean my house and I too sweat like crazy. Honestly I think most Dr’s are not education or really know what we are going through .
December 19, 2018 at 6:27 pm
I have had GBS for 14 months and I was told I would be fully recovered in 1 year…not true. I do not have CIPD… my symptoms are the fallout from GBS and all the nerve damage done at the beginning. I agree BlessedMOM, most Dr’s are not educated enough to know! My primary care Dr that I saw after being released from the hospital treated me as if I had just had the flu…. it’s the last time I ever went to see him. I don’t have sweating issues (other than mature lady flashes) but do have the other issues you have mentioned. Fatigue, pain (especially with physical activity), numbness and tingling. GBS stinks!
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