Skin burning

[dsdmom]

Probably OT and not related to CFS but wanted to see if anybody had insight into this. About 6 months ago I had shingles (I am 33 but on prednisone so my dr at the time was not surprised). Since then I occasionally get pain where I had the shingles and in the mirror opposite on the other side of my body (how it was when I had shingles). But yesterday I started getitng the same pain along my left tricep and then a little on my right - spoke to my new doc this morning and although I had yet to develop a rash we have the antivirals at the ready.

Well now it is more diffuse and covering most of my back - it feels like it's sunburnt plus prickly. So not thinking it's shingles anymore. What the heck is this? Neuropathy? Why all of a sudden out of the blue? I will talk to my doc in the morning but does anybody else have any ideas? Thanks.

 

[serenity]

no big answers for you - only that i know a friend who has fibro who complained of the same. feeling "sunburnt".

 

[dsdmom]

Thanks danib -
That is so weird. Does your friend know what sets it off? And does it eventually go away for him/her?

 

[gracenote]

I've not had shingles, so I can't make a comparison to that. I have a lot of skin burning type sensations, sometimes pain. Often on the insides of my thighs or my arms, also my feet, sometimes my hands and wrists. When it comes, it feels like a bad sunburn. I'm assuming it's nerve pain, but I've never known. I've never had rashes with it.

dsdmom, please let us know what you find out.

 

[Timaca]

I have burning, sparking, crawling nerves all over my body. They have been part of my illness the entire time I have been ill.
Best, Timaca

 

[dsdmom]

gracenote & Timaca - does your burning go away at times? Or is it always with you? Anything help that you can think of?

 

[gracenote]

It comes and goes.

What helps in some spots is Lidoderm Patches. Interesting, because they are prescribed for shingles. My insurance won't pay for them (because I don't have shingles), and they are very expensive out of pocket, but I get a lot of free samples from my doctor's office. They are wonderful, but not very useful for large areas. They are like a miracle on a certain spot in my mid-back to stop pain from spreading. (My mid-back pain is complex and more than just nerves.)

I would ask your doctor if you could try them; it might help give you more information about what is going on.

 

[serenity]

my friend swears that once she went gluten free they went away. not a huge fan of diet related cures myself, but that is what she said worked for her.

 

[gracenote]

I haven't been eating gluten (maybe a little has slipped by) for over a year and a half. To me it seems viral or bacterial, but I don't really know.

 

[JPV]

no big answers for you - only that i know a friend who has fibro who complained of the same. feeling "sunburnt".

The first major symptoms that occurred with me was a "sunburned" feeling over my whole body. It came on suddenly and lasted for several months. At the time I was sure that I was going to kill myself if it didn't stop, as it was so severe that I really didn't think I could have endured it for much longer.

It finally subsided a bit after about 6 months. Now it is mostly present throughout my legs. It varies quite a bit in severity and seems to increase with stress and lack of sleep.

A limited Gluten/Lectin free Paleo style diet, digestive acids/enzymes, probiotics and Freddd's B12 program seems to have helped the burning (and brain fog) the most so far. I sadly fell off the wagon last week and need to get back on track. I'm assuming it's some form of nerve dysfunction. From what I gather B12 is critical for nerve repair. Perhaps that's why Freddd's treatment seems to help with this.

 

[Frickly]

I have the burning sensation that is usually on my face and neck. It feels as if my skin is on fire and feels the same to the touch. I also get a red rash on cheeks, neck and chest. I never have a fever when this happens but it burns. I think it is viral. I have chronic epstein barr virus and it flares up sometimes. I also think certain foods can trigger it. For me...it's alcohol. If you think gluten could be a trigger you might want to try digestive enzymes with each meal in case you accidentlly ingest some gluten.

 

[valia]

Probably OT and not related to CFS but wanted to see if anybody had insight into this. About 6 months ago I had shingles (I am 33 but on prednisone so my dr at the time was not surprised). Since then I occasionally get pain where I had the shingles and in the mirror opposite on the other side of my body (how it was when I had shingles). But yesterday I started getitng the same pain along my left tricep and then a little on my right - spoke to my new doc this morning and although I had yet to develop a rash we have the antivirals at the ready.

Well now it is more diffuse and covering most of my back - it feels like it's sunburnt plus prickly. So not thinking it's shingles anymore. What the heck is this? Neuropathy? Why all of a sudden out of the blue? I will talk to my doc in the morning but does anybody else have any ideas? Thanks.

I have had this, on my back and stomach it felt as though my skin was actually burnt as in scalded, it is said to be a neurological symptom of advanced Lyme disease, the sensation eventually went away with antibiotics.

I also had a sunburnt feeling on my shins and ankles, which developed into Acrodermatitis chronica atrophicans (ACA) also found in late stage Lyme, which I still have.

http://emedicine.medscape.com/article/1051695-overview

 

[dsdmom]

Thanks everyone for the input. I already am gluten free...
I spoke with my doctor this morning and she said that the skin burning was a part of dysautonomia and I could just be flaring. But then I spoke with my husband who said that, oddly enough, a couple people he knows from his office have recently had the exact same thing. Burning skin on their back and it seems to be a virus and goes away in about a week. So we'll see what happens...my doctor offered the lidoderm patches but I am holding off for now. I see her thursday anyway so if it is still bad or worse I will take her up on that.

 

[Timaca]

dsdmom~ When I'm having my better days, it is less, when I'm having worse days, it is more prominent. It is less than it used to be, for I used to tie a bag of frozen peas onto the top of my head, for the scalp would hurt so much (my family called me pea brain . I would like for it to go away, but it hasn't yet (I've been ill over 6 years, and it was a presenting symptom). In my case, I think it is caused by a pathogen (viral and/or bacterial).

Best, Timaca

 

[shannah]

I started Lauricidin a couple of months ago, have had to increase slowly but it seems to be helping with the burning skin. Also seems to be helping with the neuropathy.

 

[maryb]

I had this burning sensation, mainly in my lower leg left side, it disappeared immediately after taking the first 3 Valtrex tablets (which I had for 2 weeks beginning of December '09) it came back about 6 weeks ago and has got steadily worse moving around now, more severe and further up my leg and side of hip. I have just started Valtrex again and it has reduced in intensity by about 50% after 2 days, I have another 8 days supply so if it disappears again think its conclusive for me it's a symptom of the activity of EBV.

 

[Francelle]

Apart from a terrible cough, 24/7 burning skin was my first symptom which started about one month before that fateful day 3rd August 2007 - the day most of my other symptoms started. This symptom has been relentless and never really eases, altho' less obvious when I am walking. I now am on Lyrica and panadol (tylenol) which at least helps me to sleep without being woken by pain.

For me the burning/buzzing/electrical currents have been worst in my legs but I have burning patches all over from time to time. Initially before all my other disparate symptoms set in, my doctor diagnosed me with peripheral neuropathy (PN). Now I know that I have neuropathic pain but not sure that it is PN as such. ...except that PN is sensory neuropathy. I also have fasciculations which can be due to motor neuropathy and I have Gastroparesis which is often autonomic neuropathy - so the trifecta.

I have no doubt that unless I have some other condition which has not yet completely manifest, then these constellation of symptoms must accompany Fibromyalgia in some instances!

 

[faith.hope.love]

I had recurrent shingles with horrible post-herpetic neuralgia and hypersensitive skin ALL OVER, and it completely went away with cimetidine + valacyclovir. I have a thread on here about that, but it's super long. Bottom line though, it works very well! http://www.forums.aboutmecfs.org/showthread.php?2077-Tagamet-(cimetidine)-for-CFIDS-(worked-for-me)

 

[John Day]

One way to differentiate between these various burning sensations is to establish if the burning intensifies at rest. This odd symptom is fairly typical of small fiber sensory neuropathy. Occasionally neurologists refer to it as 'burning worsening at night' which is not as accurate as the correct description 'burning at rest'. It appears that the burning sensation has something to do with axonal or myelin regeneration.
Sensory neuropathies generally affect the lower limbs first, and most often begin distally (at the furthest end of a nerve). However, there are many instances of neuropathies that affect other specific parts of the body such as the face.

Ezekiel Fink UCLA Dept. of Neurology Small Fibre Neuropathy: Answering the Burning Questions (42 pgs PP)

http://www.pnhelp.org/pdf/video/Fink_Small_Fiber_Neuropathy.pdf

 

[Cort]

Thanks John, I have sensations of muscle burning after exercise or sometimes during stress - I guess that is very different. It's one of my key symptoms...