Behcet's Syndrome Society
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Burning skin: ?Peripheral neuropathy?

For the last few years I have had intermittent periods of experiencing a scalded-type sensation in the skin of my thighs and buttocks & genital area; there is nothing visible whatsoever; no reddening or actual heat in the skin; just the sensation, which can be quite painful at worst and damned annoying at best. I asked my GP about it a couple of years ago, prior to my diagnosis of Behcets; at that time he thought it might be nerve damage as the result of having fractured my coccyx, but that was about 10 years ago, and the burning has only manifested itself in the last couple of years. Having read others' posts about PN, albeit of different types: Has anyone else experrienced anything similar? Could this be another symptom of Behcets?

13 Replies

hi pixie_14,

I have experienced the same as you describe, as though you have been scalded with hot water and your left with that hyper sensitive area, which as you said (perfectly) ; can be quite painful at worst and damned annoying.

I have had Behçet's for 30 years and what you described is one of many symptoms I experience, I can tell you that I have had CNS (central nervous system) damage almost for that 30 years. I get this intermittent periods also; on the back of my neck, on my forearm, thighs, chest and shoulder, on the back of my hands and the one i probably dislike the most; on my abdomen and opposite area on my back at the same time.... I told my last consultant; an immunologist; he wasn't interested at all, over the years I have explained this to other consultants but have never really had a solid answer;.

I am in the process of referral to the centre of excellence in Birmingham; there are two others; London and Liverpool, I will let you know if I get an answer for this, I to have had this on and off over many years; I am pretty sure it will be to do with CNS.

Over the years I have had a lot of neurological involvement; eyes, loss of periphery feeling, I also had a stroke when I was 24; but please don't feel alarmed as this is an extremely rare occurrence; and if I quote my last neurologist; "It wasn't a stroke, it was a Behçet's neurological incident" (I stood corrected ;-))

If you would like to know anything else, you could PM me your e-mail etc...


Hi Rosshi, I have all sorts of burning skin, intense light, hot water, the sun, running or any excursion. My immunologist think i should see a neurosurgeon. Since you might have seen yours, is there any cure, any medicate that helps to reduce it, please help me out here, i cant do any thing with this chronic heat in my body, that creates this heat sensation and prickly skin. thanks


hello Bilal hope my reply finds you well, I wish I had the answer to your question but unfortunately I do not, I can only tell you about how I try to cope with the BURN; if possible wear loose clothing…. Another thing to try us distraction = get your head into a good book or in my case a computer or two, try to get your focus off the burning; try to ignore it with distraction; another thing I have a habit of doing for pain distraction; I tare away at my cuticles but I don't really recommend this as you still get pain, just from somewhere else, I'm sorry there are no simple answers to this, all the neurologists I have spoken to about this have said there is no way to stop it from happening we just have to learn to live with it; we have our cross to bare. You could try a strong painkiller but same again the pain doesn't go away it just alters, although this is sometimes just enough to help you get through.

I wish you well and hope you find a coping strategy...

best regards,



Thanks Rosshi, I'm going to Aintree in April, so I'll see what they say about it and let you know! :)


OK when I get my appointment through for Birmingham we can compare answers and see if they tally :)

Take good care, speak again soon...

kind regards,

rosshi ;)


I wish you all the best. Seeing a neurologist may a least help with understanding your Peripheral neuropathy plus no Dr knows everything and perhaps you may see someone who may know a thing or two to help you; I'll keep a look out for new posts…





Behçet's neurological incident ? good gracious... that's an interesting phrase.. ugh.

i have had the burning feeling on my feet, arches of and heels etc; makes it difficult/painful to walk... i have tried different shoes from sneakers/tennis shoes, to dress shoes, even slippers...i wear different shoes to work each few days about to see if i can make it feel better...sigh*

at least at this time i am not having the head ache/soreness where it had been feeling like someone whacked my head with a shovel.... so thats a good thing! :)

my best to all of you on your next appts.... i wondered if anyone else has the foot burning and also the feeling like someone slicing your achilles heels; and the feeling like someone whacked you in the head with a shovel.


I can't compare notes for a while as there was no nurologist at my 1st visit but there is going to be when I go back in six months, I will try to let you know then...





Hello all :)

I have had this for years but it was put down to a car accident I had in 1977 so have just put up with it! Mind you I am not sure what they could do to help.

Will be interested what they say when you go for the appointments.

Good luck xx


I suffer from peripheral neuropathy, as well as other types of neuropathy that are not peripheral. Normally, peripheral refers to the edges, or outer reaches of your nervous system and the smaller branches of nerves. So typically, the pain or abnormal sensation of any kind, like numbness, stinging, tingling, burning, pressure can start in toes, or feet, fingers or hands and creeps upwards slowly as it progresses.

However, you have had it in areas that are not quite typical of peripheral, so perhaps there are some specific nerves that are affected. I know quite a few friends of mine have had entrapment of sciatic nerves, around the sacral/lumbar region (your tail bones) and that squeezing of the nerve has given abnormal sensation in either of their legs, their thighs and their buttocks. Compression of sciatic nerves can be due to a variety of reasons. My OH has it because he has a prolapsed disc in his vertbrae pressing on nerves.

My other friend has had it after a bike accident. And my father had it after having crumbling of bones and in spine and arhtritis, where nerves were trapped.

I have also heard of diabetics suffering from it too.

I should imagine if you put your BD to one side, that a normal diagnosis could possibly be due to your previous break/accident and seems typical of what some of my friends have suffered. And I have heard of that happening years after an accident. My father was in a a car accident when he was about 28 yrs old, but then did not start to get spinal problems related to that accident well into his 40s onwards. I would not assume that a prtevious injury had nothing to do with it. Sometimes with a break you can get a weakness which might pop discs out, and then those can trap nerves,....or you can get narrowing or thickening of the broken vertabrae, which with age start to narrow even more and then start to pinch nerves....or you can get little shards of bone that move about and trap nerves intermittently.

As BD can cause vasculitis in any blood vessel anywhere, then it is also possible for that to cause inflammation of any nerves whether main or peripheral because the nerves have a rich blood supply to make them work.

Sounds like your doc was on the right track of thinking it was sciatic nerves that were involved as that was where your injury occurred.

What you might find is that the odd sensations or the pain comes and goes intermittently.

My Oh finds with his sciatica that it helps if he tries to maintain a good weight and keeps up muscle strength by attending a core exercise class that is specifically for that type of problem. Too much exercise can exacerbate inflammation and pinching, but too little exercise or being overweight can cause it to flare up.


Essie, Thanks for your suggestions, but just to save anyone taking misinformation as fact: I need to say you're getting your medical terminology a bit confused.( I'm an anatomy tech of many, many years); yes peripheral does mean 'around the edges', or more correctly 'away from the centre' - but the far reaches (eg fingers, toes etc) are 'distal' (meaning away from the heart), as opposed to 'proximal' (meaning nearer to the heart) so peripheral anything is 'not at the centre', as opposed to 'at the farthest reaches'; however, In Neurology, the peripheral nervous system is ANY nerve which is not part of the central nervous system (the brain and spinal cord); a subtle, but very important distinction! Anyhoo; It's definitely not a trapped or inflamed Sciatic nerve; wrong sensation, wrong area entirely and wrong location for # coccyx damage (sciatic nerves arise @ L4, L5 & S1) and I'd definitely know if I'd 'popped a disc' - not possible with the sacrum/coccyx anyway as the bones are fused! Given the similar sensations others have described above I'm more inclined to think that it is Behcet's-related than an old non-displaced # coccyx


I've had this burning sensation on both arms at the level of the elbow but on the front facing aspect - does that make sense. Nothing to see but sometimes the burning is so severe that the bedclothes touching it are unbearable - like the worst case of sunburn I've ever had.

My rheumatologist wasn't that interested and said that this wasn't in the area usually covered by neuro-behcets. I didn't pursue it, I don't have the energy for debates at the moment.


Anyone know about this? I’m with this sensation in elbows and knees.


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