Behcet's Syndrome Society
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Night-time burning pains and fever

At night I get burning pains and tingling in my shoulders and elbows running down to my hands. When the pain is at its worst I get very sweaty, and wake up feeling drained and headachey as if I have flu or a hangover. When I wake up my shoulders are tensed right up and my fists clenched. The pains seem to be made worse if I use the computer for more than half an hour, or if I knit. As I am a video maker with a love of Icelandic knitting, this is affecting my quality of life quite badly. Medics seem mildly puzzled / disinterested so far. It started about 8 years ago and is getting steadily worse. Behçet's thing do you reckon, or something else?

6 Replies

Hi Jaxxi, probably Carpel Tunnel Syndrome, surprised nobody has suggested this. You are describing my symptoms which began after the birth of my first child. It was about 14 years before somebody listened to me, then I had an op on each hand about 3 years apart and it's been good for the last 10 years. Strange though that since this site began I have noticed lots of people have this kind of there a link to BD....who knows?? Try suggesting this next time you see a doc.




I have the syndrome in the opposite side of the hand, can't remember the name of it offhand. I was offered surgery but I was so long in getting that offer that I'd learned to live with it and declined. I've been told that it is bd related, inflammation of the channel through which the bundle of nerves must pass puts pressure on them and gives the typical tingling and numbness


It sounds as if it’s a catch 22 – pain makes you tense up, being tense causes pain, pain can cause sweating and loss of fluid and tension can cause headaches!

The activities you are doing could be causing or aggravating it. Are your surroundings and the way you work ergonomically suited to your needs? Do you pay attention to your posture and how long you spend in one position and on each activity; do you take regular breaks, stretch, walk around a bit etc? Do you take on plenty of fluids while you are working and not get so involved in what you are doing that you forget?

Managing your symptoms could be a good start to breaking a possible cycle whilst trying to find out the root cause of the problem.

Whether it’s BD or not I wouldn’t concern myself about too much, it needs looking at in its own right. It could be neurological, mechanical, inflammation, trapped nerves – it could be coming from your neck downwards, your wrist upwards – it’s really not something any of us can tell you, but I do think you need to push for investigations or referral. A nerve conduction test may be helpful, and a visit to a physio to look at your posture. I have carpal tunnel but I also have referred pain right down to my little finger and up to my forehead which is NOT caused by carpal tunnel.

It could be any number of things and I think this could be a case of ruling out possibilities to get to what the problem actually is!



Have you tried a wrist splint bandage- I find it helpful - could tied you over until you get some help/

Interesting about BD and carpel tunnel. i got v bad carpel tunnel when U jad a Behcet flare after birth of my son. ) A common time to get a flare). At the time drs were puzzled as it is more usual to get carpel tunnel during pregnancy. Th


I think you need to consider it may be something other than Behcet's. I think I've got heightened awareness because I've just found out I have carrier status for Becker's Muscular Dystrophy. Also my Dad had some neuropathy in his leg that was never explained. Now my brother is getting similar.

Anyway have been reading about all the neuromuscular things. From what I read they are hard to diagnose as there are many different types.

Have a look at the disorders

section here:

Some of what you experience on waking sounds like dehydration. Be interesting to know what your electrolytes are like on waking.

Do you have insulin resistance and/or Diabetes?


Aus, it could be dehydration as I wake with very dry eyes and mouth also. I do keep fluid levels up because of it. I am not diabetic, but probably insulin resistant. What would electrolytes on waking signify and how would that be tested?

I am having an MRI of the head in a few weeks, but the neurologist found no problems with reflexes etc. My balance is off, though and the tingly side is a bit weak.

I just wonder whether Behçet's is causing some inflammation of a neural pathway causing nerve compression. It could be carpal tunnel-like syndrome, but it feels like it's rooted in the shoulder and elbow rather than the wrist. I think it hasn't been picked up in the past as it was one of so many symptoms I was reporting pre my Behçet's diagnosis, I think the docs saw it as another 'medically unexplained' factor in a bigger somatisation disorder.

I connect the arm pains with the hangover feelings as they both happen in bed, and both wax and wane with flares, but it may well be that they have separate causes.

Thanks for helping me begin to tease this out.


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