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Living with Polyneuropathy CIDP, GBS, & CMT

How do you take care of the burn? The overdrive? The static? I put some of mine here


#1

I'm a 20+ year survivor of GBS and although we experience different levels of pain, one that stands out and is most common is "the burning sensation"...can you share some of your remedies? What works for one person, may not work for another so maybe your remedy might work for one of us!

I'm also going to post some things that I have learned throughout the years that have put the sensation into overdrive and some that have helped.

1) I thought I could go back to the gym because my neurologist said I would return back to normal...WRONG..as a matter of fact, I found that doing anything that is overexerting like running, weights, etc.. actually puts the body in overdrive the next few days and so I am down for the count the next couple of days. I found that light yoga and light swimming make for a better solution.

2) I thought going in a steamroom was the answer to my prayers and boy did it feel good...I even stretch while i'm in there. BUT I also found out that any change in temperature (especially drastic change) can put you back on overdrive unless you plan on living in there hehe

3) I live in Chicago and it gets pretty cold out here. I don't know what it is and I've even spoke to my neurologist about this: Why is it that I love the cold? I know you're probably thinking i'm crazy but something about the freezing temperature here makes me feel good! And if I want to feel even better...I throw on some high heels (may not work for men? lol) My body is in constant burning sensation and for some reason when I put heels on...It's like my body is giving in to the burn. It's giving it what it wants! It's like my body is telling me to go out in the cold and put on heels! PLEASE don't try this as it may be dangerous for some.

4) I found that any bacteria infection such as UTI or stomach can make you feel even worse with the burning sensation so always make sure you take care of those things so you won't get as sick.

5) No jeans for me :( ...they make me super uncomfortable. Anything that is jean material just rubs me the wrong way :/

I know 2 and 3 are kind of contradicting each other but this condition is rare just like me hahaha

Please share yours!


#2

I agree that pushing myself too much physically, while logic tells me it SHOULD be good for me, it has the opposite effect and I end up being wiped out, exhausted, and it sets my progress back. As far as the other ones, they dont really apply to me. Well...the one about temperatures sort of does. I am much more sensitive to heat and cold than I was before I got sick.


#3

I think my thermostat is broken, however I much prefer warmth to cold. I get the chills a lot especially after I’ve had something cold to drink. As for the burning sensation. My feet always feel cold, but I have a constant electrical storm going on in them. I was on a fentanyl(?) patch which helped with other pain, but not my feet. I’m currently on Lyrica, but will soon be off. Exceedingly expensive and don’t seem to be that effective. I’ve heard about gabapentin, but have no experience. .


#4

Thx for all of your posts. Funny thing is,… it’s now been almost 7 months since i got GB and i remember that first weekend thinking how I’d just be taking a week off to get better then thinking, oh man, i may need a month, then two months later finally diagnosing myself and waiting another critical week for a spinal tap and another critical week for my first IVIG. Well, it seems like this whole thing is a waiting game. My current wait was to start recovering, but now at 6 1/2 months my burning has spread all the way up my legs and arms and torso, (upper back, and sometimes into my scalp like now.
I live in Las Vegas where we get above 11 (sometimes 120) and this was the first year i didnt even think about the heat! I kept wondering why it didnt even effect me at all, in fact i loved it. Cold was excruciating, like to hold ice or a cold drink. I know what u mean when u say that your temps are off. Its the autonomic part… sympathetic/parasympathetic (?) Nerves that are damaged. My legs are always cold too, & it helps to hear your stories like the jeans thing, and the heels. Im considering quitting my dream job of being a Child Life Specialist in a pediatrics because the demands of pushing myself to walk without a break wipes my legs out, or sit too long without movement stiffens my muscles. I just cant believe im still this bad and even getting worse. I learned,… never miss a dose of Gabapentin! Bad idea, especially when im working. What helps? Rest. Good news though… i was strong enough to ride a bike on the flat beach side path in California a couple weeks ago!!! Why is my strength improving when my pain and muscles arent? This is the strangest illness ever.


#5

Ooops… the temps in Las Vegas get between 110-120 (def higher than 11… LOL)


#6

Yes. The neurologists made me think that I was going to be back to normal. But if you really think about it...how can someone who has been paralyzed go back to normal? I still fight with them all the time about this. Although they know I'm in pain, they tried to throw the word Fibromialgia at me and I keep saying no because I don't want another patient being told the same thing.

QweensGambit said:

I agree that pushing myself too much physically, while logic tells me it SHOULD be good for me, it has the opposite effect and I end up being wiped out, exhausted, and it sets my progress back. As far as the other ones, they dont really apply to me. Well...the one about temperatures sort of does. I am much more sensitive to heat and cold than I was before I got sick.


#7

My feet and hands are always cold too but maybe because I level it out by just going into the cold and then I feel like it's not that bad. But when i'm home, I will put socks on cause the different temperatures make my body work more and that burn goes into overdrive. When I was taking Lyrica I was not well at all...I was so tired on top of being tired. I heard about the gabapenten...I might bring it up to my doctors.

Petr said:

I think my thermostat is broken, however I much prefer warmth to cold. I get the chills a lot especially after I've had something cold to drink. As for the burning sensation. My feet always feel cold, but I have a constant electrical storm going on in them. I was on a fentanyl(?) patch which helped with other pain, but not my feet. I'm currently on Lyrica, but will soon be off. Exceedingly expensive and don't seem to be that effective. I've heard about gabapentin, but have no experience. .

#8


OH yes! The strength part I can totally relate because I feel like I can do the running and do the weights more than my younger friends....but woah the payback that my body had waiting for me the next couple of days was the worst. I was literally down for days after working out. It's not til I started seeing a pattern that I stopped. And Kathy, unless they find a way to regenerate the nerves or find a way to put the coating back, we will be dealing with this for a lifetime. Like I said, I'm 20 years in and it doesn't get better for me. I don't want you to lose hope tho! But I do notice a pattern with being a woman like that time of the month...i'm pretty much in bed laying down and have the restless legs. I noticed any imbalance in my body will cause the overdrive sensation.


Kathy Cooper said:

Thx for all of your posts. Funny thing is,... it's now been almost 7 months since i got GB and i remember that first weekend thinking how I'd just be taking a week off to get better then thinking, oh man, i may need a month, then two months later finally diagnosing myself and waiting another critical week for a spinal tap and another critical week for my first IVIG. Well, it seems like this whole thing is a waiting game. My current wait was to start recovering, but now at 6 1/2 months my burning has spread all the way up my legs and arms and torso, (upper back, and sometimes into my scalp like now.
I live in Las Vegas where we get above 11 (sometimes 120) and this was the first year i didnt even think about the heat! I kept wondering why it didnt even effect me at all, in fact i loved it. Cold was excruciating, like to hold ice or a cold drink. I know what u mean when u say that your temps are off. Its the autonomic part... sympathetic/parasympathetic (?) Nerves that are damaged. My legs are always cold too, & it helps to hear your stories like the jeans thing, and the heels. Im considering quitting my dream job of being a Child Life Specialist in a pediatrics because the demands of pushing myself to walk without a break wipes my legs out, or sit too long without movement stiffens my muscles. I just cant believe im still this bad and even getting worse. I learned,... never miss a dose of Gabapentin! Bad idea, especially when im working. What helps? Rest. Good news though... i was strong enough to ride a bike on the flat beach side path in California a couple weeks ago!!!! Why is my strength improving when my pain and muscles arent? This is the strangest illness ever.

#9

It’s so sad. What we could do before. I was so active, the hours I put in working out. I wonder sometimes think why ME. But then I also think about everybody else with the funk GBS. WHY.
I fear a relapse more then the funk GBS. I tired a sauna loved it too, wonder why I was wiped out. Iam not any meds. Can’t find a doctor to help me. I went to a new one he walked in said I was cured of GBS. Told him the weakness the pain, all the things I could do before. He says you walked in here you are cured wow. It’s sad that we have to deal with GBS and how it has changed your life’s. But when you look for help you get it’s cured it’s in your head in time it will be better. Your life’s will never be the same :slight_smile:


#10

Tally:

  1. Don’t give up many get totally healed, stay optimistic.
  2. Find a neurologist that knows this disease, get rid of the guy that says you are cured, there are lingering effects. Find someone that knows how to treat them, particularly the pain that accompanies GBS.
    On my good days, I walk like a toddler. I’d hardly say I was cured.

#11

Thank you. Yes doctor number 4 next. I have to get a new neurologist doctor. Last one did the nerve test. Said you have GBS no need to come back. I found one that could help called to make appointment and he had retired. My legs still buckal on me. The pin needed the crawling bugs the pain :slight_smile:


#12


It gets me so upset when doctors say "You look fine...you're cured"...I am positive and I think positive all the time but when you're in pain, you don't think straight. I would cry on my way to work and wipe my tears before walking in.

I have an amazing friend who was and has been such a great person in my life. The only reason she knew that I wasn't well was because before this GBS I was able to go to the movie theatre and after GBS I was not able to do that anymore.

I was so young and I just lived with the pain not knowing it was the residual affect of this syndrome. I was 17 at the time...I had no idea about medicine or what it was I needed to not be so tired. I was even put into counseling because they thought something was wrong with me...I kept telling them I felt this sensation and I needed it to go away. At one point, I thought everyone felt this way and that maybe I was crazy.

One day I met this woman in a baseball field...both our kids were on opposing teams. She would see me take my son and then I would sit and get up...sit and get up...then I would leave and tell someone else to pick up my son. One day, she came up to me and said "I hope you don't mind but I have been seeing you a lot here but you are always moving around and sitting" she then told me she was a nurse and she can't help but notice things like this. Now..keep in mind I never talk about what happened to me at a young age because I can't help but cry...so nobody knows this part of my life and what happened to me because I didn't want people to know. She then insisted on coming over and even said it was so our kids could get close. I didn't want to bring someone else into my life because I have limitations on things I can do and lying to another person about how I was feeling that day seemed like too much work. Anyway, she came by and kept asking me what was wrong and to my great surprise, I opened up about how my body is always burning and I have good days and bad days and how my balance is off and have been hospitalized for not paying attention to what was in front of me and I fell so many times and I just kept talking...I told her everything! She then asked me if I had suffered something traumatic in my life and my answer was no. The reason I said no was because every doctor including my parents kept saying it was in my head. Then I said..I did have GBS when I was young but i'm fine now...this is something different..I just feel burning and chronic fatigue. She told me that what I went through was residual of why my body feels this way. I told her that I was tired of being judged by people and I was just going to live like this. Since she was a nurse, she had connections in the hospitals and talked to a few neurologists. I kept telling her that I wasn't going to go because I hated hospitals and how they treated me because of what I looked like which was that i looked fine on the outside. I am going to fast forward because I can write a book and I am a writer (but please don't judge my ramble because I'm not being published lol).

I met with one of the best neurologists (so they say) and he had some nerve test administered on me. The person who administered the test told me how the needle was on full speed and it shows like I was never paralyzed! I walked out and closed down again...if it shows like I was never paralyzed...why am I complaining? I felt the guilt of knowing that some people never got to walk again and I shut down again.

I graduated college which took me like 10 years lol but I was determined to do it (i'm 28 at this point). My confidence was at an all time high and I was now determined to look for answers as to why I live with chronic pain and fatigue (I looked at these neurologists as my equals because we were both educated now. I'm no longer the shy person who was going to walk away. I wanted answers! Why am I living like this? I can't even hold a job! My quality of life could be a 10 and it was a struggling 3! I wanted a copy of my nerve testing and found out that the reason the needle was going crazy was because I had damage to my nerves...the coating was gone. This man was suppose to be a top neurologist?

I finally found a doctor who heard me...and you know why? Because I was having a real bad nerve day and hadn't slept and my eyes were bloodshot and I basically collapsed in front of her. We started on medication and I tried everything you could imagine and I would bring the bottle of medications in and set them on her table because I didn't like the way they made me feel...fast forward to 40 years old and I have tried every medication. She understands me and listens to me. My point is, keep looking for doctors, you will come across one who will listen. I was so frustrated and was in so much pain and one time I yelled and said would you listen to me if I had stayed paralyzed because sometimes I feel like I am with all this.

I have come to a point where I am opening up. I am 40 years old and I feel like I want to stand up for people because I don't want them to go through life in pain. We are given one life and we are going to spend it lying on the couch with chronic pain? NO! I'm done with these doctors telling me what I should feel. And my friends too btw, they have come to understand what i mean by good day and bad day. I call myself on this board "NeverPlan" because I really never plan...I don't know if January 15 or 16 or whatever is going to be a good day where i'm going to plan something. I don't plan anything because I'm not going to disappoint or be upset about it.

I wrote so much ooops but I hope my story helps one person at least or the fact that I express myself now after all these years.
Tally said:

It's so sad. What we could do before. I was so active, the hours I put in working out. I wonder sometimes think why ME. But then I also think about everybody else with the funk GBS. WHY.
I fear a relapse more then the funk GBS. I tired a sauna loved it too, wonder why I was wiped out. Iam not any meds. Can't find a doctor to help me. I went to a new one he walked in said I was cured of GBS. Told him the weakness the pain, all the things I could do before. He says you walked in here you are cured wow. It's sad that we have to deal with GBS and how it has changed your life's. But when you look for help you get it's cured it's in your head in time it will be better. Your life's will never be the same :)

#13

I think it’s great that you wrote so much. It’s sad that doctors say cured or fine. If they don’t have GBS, they don’t know. I always think if i treated people like the doctors do, I would be written up and could take days. If it wasn’t for all the wonderful people on this site, I don’t know what I would have done. :slight_smile: I have lern so much. More then all the BS from the doctors. I was release from the hospital may 11, 2014. I was to go into a rehab place I didn’t go. But at the time I didn’t know how bad GBS. The doctors didn’t tell me the nurses didnt tell so. So I thought I got treated Ivig for five days. I will be back to new in a few days. Guess I was wrong. It’s to bad that we have to deal with GBS. And deal with doctors that think we are cured. :slight_smile:


#14

For sure..I would be fired too although now I freelance. One thing you have to do is take care of yourself...that's first and foremost. You need to push yourself and go to rehab. The good thing for me at the time was that I had no choice because I was an in-patient. I wish I would've spoken sooner because I feel that the people who had it a long time ago could have spoken out for the ones affected today like you. I should have yelled at them and said that they need more care than what is being provided. Why don't they ask us if it's so rare? I could have provided them with my everyday life. But no, they scooted me away. I will fight now. I actually have sent many messages to neurologists and even one here at The University of Chicago. You fight your fight and I will speak up so they can get the message :)

Tally said:

I think it's great that you wrote so much. It's sad that doctors say cured or fine. If they don't have GBS, they don't know. I always think if i treated people like the doctors do, I would be written up and could take days. If it wasn't for all the wonderful people on this site, I don't know what I would have done. :) I have lern so much. More then all the BS from the doctors. I was release from the hospital may 11, 2014. I was to go into a rehab place I didn't go. But at the time I didn't know how bad GBS. The doctors didn't tell me the nurses didnt tell so. So I thought I got treated Ivig for five days. I will be back to new in a few days. Guess I was wrong. It's to bad that we have to deal with GBS. And deal with doctors that think we are cured. :)

#15

You are so right Petr! I'm curious to know if you have fallen since GBS affected your life? I used to think I was just clumsy and lost my balance but the last fall which was 3 months ago was pretty bad and had to go to ER. I have fallen a lot and because my new friends didn't know what had happened to me they would make jokes and say "Watch out for her cause it's a guarantee she will fall today" ...I know it's not funny but how were they suppose to know that it was my legs giving out at a moments notice. This doesn't happen to everyone but I am curious if It does to other survivors..

Petr said:

Tally:
1) Don't give up many get totally healed, stay optimistic.
2) Find a neurologist that knows this disease, get rid of the guy that says you are cured, there are lingering effects. Find someone that knows how to treat them, particularly the pain that accompanies GBS.
On my good days, I walk like a toddler. I'd hardly say I was cured.

#16

I too have developed a love of the Cold.I live in montreal and it gets cold here too. I have even been going on cold weather vacations. I never thought it might be connected to gobs.i am a 15 yr. survivor. I also found any infection cold flu whatever can become almost extreme. I live with that and don’t freak out any more. Everything takes longer. Keep on trucking!


#17

They actually have these cold chamber spas but doctors find them very controversial. But we live in the cold so we are good. So maybe now you know why it is that you love the cold :)

Jennifer said:

I too have developed a love of the Cold.I live in montreal and it gets cold here too. I have even been going on cold weather vacations. I never thought it might be connected to gobs.i am a 15 yr. survivor. I also found any infection cold flu whatever can become almost extreme. I live with that and don't freak out any more. Everything takes longer. Keep on trucking!

#18

I can hold on to the back of the chair and stand with on my toes and the tinkling and burning goes away. I use a heating pad on my back that helps calm the spasms. I also turn the heated mattress cover on medium and let the bed warm up, then I turn it off and can go to sleep rather quickly. My lower legs and feet hurt more at night when most of my day is done. I walk on concrete floors all day at work. But when I try to relax the shocking and burning begin. I take 1200mg of gabapentin twice a day.


#19

Neverplan
I have never fallen, an accomplishment I take some pride in. However the day will come as my right leg buckles often, but so far I have caught myself. Also, when out, I always have a cane, which helps a lot. If you don’t use a cane, I recommend it. I’m too old to care what people think about using a cane. I need it therefore I use it. It helps if you can find a cane that makes a fashion statement. Mine looks like it has a lot of bling. I get comments on it all the time. More of a fashion accessory than a sign of weakness!!


#20


One thing I am seeing throughout this GBS and if you read what everyone else talks about is body temperature. So the key is to keep your body temperature leveled. With GBS people say hands and feet are always cold so it would make sense that our bodies are working overtime, putting our bodies into overdrive...very interesting. I agree with you about the night when trying to rest. I keep hearing about this Gabapentin..I'm definitely going to try it. Thanks for your response! :)
bosslady said:

I can hold on to the back of the chair and stand with on my toes and the tinkling and burning goes away. I use a heating pad on my back that helps calm the spasms. I also turn the heated mattress cover on medium and let the bed warm up, then I turn it off and can go to sleep rather quickly. My lower legs and feet hurt more at night when most of my day is done. I walk on concrete floors all day at work. But when I try to relax the shocking and burning begin. I take 1200mg of gabapentin twice a day.