Does anyone get a burning sensation ?

Norman,
The burning sensation is an unfortunate part of this disease. My case is severe at this time and we are hitting it pretty strong withchemo, plasma exchange, and sumadrol.
I would suggest you bug the heck out of your neurologist to get treatments started asap. The worst thing that happened to me was delay in dx and start of treatments.

yes I get the burning sensation.

I find a warm rice pack often helps, I know that sounds weird putting a warm pack on a part of your body that feels like it is burning.

Sometimes my feet or hands feel hot to me on the inside but when I touch the skin it is actually cold! Go figure that one out! LOL!

Are you on any medicaion to help with th eburning and pain? I take gabapentin.

Rhonda from Canada

I was also going to ask what meds your husband is taking? I was put on Neurontin ( now the generic fomr is called gabapentin) right away when I was first dx with GBS. At that time it was 3600 mg, after 3-4 months I did wean myself down to 1800 mg & have stayed at that dosage since 2002. My feet still burn but not like in the beginning of my CIDP. I also try to wear leather slippers, up to the ankles, zipper in the back, as I find that if I wear tie shoes too much my feet burn worse.

It sounds to me like your husband is in rough shape & only getting worse, I honestly don’t understand why he isn’t in some type of teaching hospital. Sometimes, the longer the nerves remain damaged, the less the chance of recovery. Once I was unable to walk, I was taken from northern MN by ambulance down to Mayo (5 1/2 hour drive.) Eventually the numbness did proceed up my chin to my lower lip & my swallowing was affected. This illness can get very ugly, & I know 2 who have died when they became unable to breathe, respiratory failure it was called. I am not trying to scare you, but truly wondering why he would want to be at home, waiting for neuro appt. when he could be trying various treatments & seen by neuros several times a day in a hospital setting?

[QUOTE=Norman]My husband has trouble some nights before he can get to sleep with his hands and feet on fire…..He says it’s like someone just lit up a torch on them. It’s usually after we have had a lot of company or he’s had a big day and didn’t get to rest a lot. At this time he’s unable to walk and only has limited use of his right hand. He was diagnosed with CIDP in Aug after finding out he had GBS in July. So far we haven’t had to be in the hospital and just waiting for the right treatment to start working. We’re hoping that healing is just around the corner and praying each day that someone will find a cure to this terrible disease.[/QUOTE]

The burning symptoms are often helped by anti-convulsants such as gabapentin (Neurontin), Lyrica and also Cymbalta (for diabetic neuropathy).

I have had good results with all of them at various points in my illness.

Ditto on the burning sensation: I’m taking gabapenten or Neurotic [Sp?] at 1200 mg per dose plus some other meds to help with the pain. You might want to talk to you doc about increasing the gabapenten and having your husband take it during the day when he is going to have a stressful day.

Stress and CIDP do not mix very well. CIDP will win out every time. Sometimes something as simple as a warm bath [if you have one] or shower and a cup of hot chocolate made with milk [no fat if you are counting cal or Ovelten[Sp?] if you want to cut out the caffeine] just before bed can help calm thing down.

The problem is if we over do it with CIDP we pay the price. If I stand to long, I know that I going to have a rough few days. Now when I’m call to sub, I’ll make sure there is a tall stool in the room. That way I can teach and get off my feet while maintaining eye contact with students. The end result is that I’m not as warn out or in as much pain at the end of the day. As you husband to see if he can find ways to release the stress factors at work. I know easier said than done.

[QUOTE=Norman]He is taking gabapenten 900 mg a day. The burning sensation seems to get worse on nights that he has been up a long time with no nap breaks and if he takes a loratab, it finally subsides and he can sleep pretty good. I have knitted some things to go on his silverware because the metal of the spoon or fork feels like a knife cutting into his skin. Does anybody else have that sensation ?????[/QUOTE]

I have recently given in to using stronger pain medications… but nothing helps as much as the gabapenten did for me. But it is difficult to stay awake… Same with biofeedback. It helps the pain, but puts me to sleep.