Sweating and heart pounding with minimal activity, or standing unsupported longer than 10 minutes. Totally drenched including underwear, fanning to decrease heat, pcp’s nurse did EKG, because I also felt chest conconstriction. Result normal, with a trial arrhythmia rate 124. I have had this 8 yrs post GBS. I get embarrassed because when sitting on a metal or wood chair it is visibly wet when I rise.
I am a CIDP survivor in remission, unlike your gbs, so we are not the same. However, I too deal with chronic fatigue and persistent sweating and can’t stand in place very long. I’m sorry that you feel embarrassed as a result of your sweating and the residual wetness that shows where you were sitting, but I’d just tell anyone that you are dealing with a medical condition and don’t let it bother you. You have enough in life to deal with without being concerned about what is left behind from your condition. Please keep yourself feeling good about the fact you have survived this disease and you continue to press on with your life as a GBS survivor and let others think what they will in regard to perspiration. You are a dearly loved child of God!
I thank you for your very kind words. God bless you!
I don’t mean for this to sound flip… but what about menopause issues? About 3/4 of what you mention can also be attributed to a wicked case of menopause. People don’t realize this, but menopause can actually make you really, really sick and can go on at random for years.
Case on point, my mom had menopause symptoms for more than 12 years. TWELVE. The official length of time for menopause in medical info is 4 years. And they claim the average age for menopause is 51 but my aunt was in menopause at 82!
Just something to consider…
Hey there! I can identify with you. I’m coming up on 4years post GBS and I too still deal with sweating profusely and not being able to stand for extended periods of time without my legs and ankles feeling extremely sore. The sweating has absolutely nothing to do with menopause. It has everything to do with overactive nerves. It’s ok. And don’t be ashamed. For me I’m so glad to be alive after being completely paralyzed from the head down due to GBS. I think you should just keep some water, a rag and an “oh well, I’m alive!” In your possession at all times! God has been so good to us survivors. On another note, I found that since my doctor has prescribed B12 I’ve felt a lot better. More energy and less muscle pains. And somehow I have a little more endurance and I feel like I’m exerting myself less. It helps. I pray that you find something that can help you feel more confident and comfortable. But know that you don’t owe any explanations to anyone! You’re a miracle! Blessings to you!
I have Small fiber sensory neuropathy along with Autonomic Neuropathy for 10 years now. And sweating is beyond anything I’ve ever dealt with. I too for no reason sweat through to my underwear and am beyond miserable. Some days I change my cloths 5 times in an hour. Nothing helps and nothing stops them. When I eat it starts back up or doing any activity I’m drenched. I have to hang my dirty close up to dry before putting them in the hamper otherwise them smell and mold. I cannot even sit in the front seat of a car because I end up steaming the windows the driver has a hard time seeing. I feel so bad for anyone who has to deal with this because just this one symptom ruins my quality of life.
Also I’m a man and menopause sweating is no where near this. I was leaving my doctors and had a Neurological Storm. We called an ambulance an the paramedic said he has never see anyone sweat this profusely. Even the emergency room physician could not believe how bad I was sweating. Could not get the ekg stickers to stick to my skin.
I have CiDP and like all of you have described, cannot cope with the heat, I turn to liquid.
The minute it’s a little “warm” it feels to me like it’s a 45 degree day, my clothes are soaked through EVERY layer, my hair, face, neck are dripping and I literally cannot cool down.
Many of times I’ve felt as though I am going to spontaneously combust!
Because I’m numb from toes to hips I can’t lift my pant legs to cool down, run cold water on my feet and legs etc., because I cannot feel it, so my brain doesn’t register and I don’t cool down.
Anyway, I couldn’t cope anymore and discussed it with my Neurologist (who is a Professor and Director of Neurology of one of Australia’s largest teaching hospitals) who put me on a medication that has been a life changer!
I was skeptical at first and thought he’d lost his marbles. The medication he prescribed is for Epilepsy (Seizures) and Migrane, NOT sweating. There is NO such a medication for sweating.
So how’s that going to help, you ask?
Well, one of the side effects of the medication if reduced sweating, SO he uses the medication for its side effects.
VERY CLEVER I say!
Obviously, there are no guarantees that all people will suffer the side effects, meaning that it won’t work for everyone, but just knowing that it’s worked for one person would be enough for me to discuss it with my own Neurologist.
The medication is Topiramate.
I hope this helps you all x
Interesting on the medication for the sweating. I get so overheated quickly. My condition seems to make me overheat fast. My poor fiancé is always cold because of the way I keep the temp all the time.
Mark with your small fiber neuropathy do you get any skin burning? I feel like I am being microwaved from the inside out all the time.
I have so many symptoms. Sometimes is burning pain and due to it I cannot wear socks at all. Other times they are numb and nothing I do can warm them. I also get pain that I describe and deep bone pain like you could imagine that you have bone cancer.
I have non length dependent small fiber neuropathy which give me pain from my feet to the top of my head. Sometimes the most severe pain ( burning pain) is in my face, other times my hand. The worse times are when my entire body is burning at the same time. It started and an obscured pain, like an aching. As it progresses burning was the most prevalent. Along with that I get stabbing pain. It’s like someone stabbed my in my back or side of my head, as soon as they would pull the knife out instantly the pain would be gone. If that makes sense. The worse being at the base of my skull.
Hope this helps.
My wife keep our house at 70-72 degrees and I’m so hot And miserable. I set the thermostat at 67. I wear light weight pajamas and a t-shirt. I cannot wear jeans anymore because of the pain plus I overheat much worse.
My heart breaks for all of us who have these awful diseases. I wish I could say it gets better but it gets worse and has made my life a living hell. I’m embarrassed, I’m tired of changing my cloths, I’m tired of waking up in the middle of the night soaking my sheets so bad I didn’t know if I wet the bed. My wife has not wanted me to sleep with her about 5 years now. I’m so sorry you guys have to deal with this also. It completely, unequivocally ruins my life ( this disease along with all the symptoms including pain and sweating. Just naming 2 of a gamete of symptoms.
Great words of advice!
Mark. I totally feel you.
You’re not alone.
The heat drains me and I get so weak I have to use a walker…thank goodness I brought the walker to mexico…but in the freezing weather I don’t feel the cold., Sandals and no coat all winter and I live in n.h…with warmer weather coming I am not looking forward to staying in my air conditioned room all summer…the sun also gives me big pimples under my hair
Mark, seriously, you need to talk to your Dr about the Topiramate! It was a complete life changer for me! Couldn’t even move during the day or me and my clothes would turn to liquid! Not now…
Imagine NO sweating!?!
I’ve ALWAYS had really sweaty hands, feet and armpits ALL my life! Since this medication, they don’t even sweat!
I’ll see what he says. Thank for giving me an option.
In my case definitely NOT menopause, I’d had a hysterectomy 11 years prior to GBS and had been given HRT for 5 years.