numbess in arms and legs

[caycay51]

hi every body i ve just been told i have this disease and i keep losing feeling in my arms and legs if i lay on em to long am not putting any presuress on am in am way just they seem to go numb then i cant seem to move coz all my joints have like knotted up

[behcetshurtsbeyondwords]

Hello,

This sounds all too familiar to me! I have this same problem nearly everytime I lay down. My legs and feet seem to get the worst of it, but my arms and hands can be struck as well. I get a numbess feeling in my extremeties, kind of like "pins and needles"-- like they have fallen asleep-- but then when I go to move them, I get sharp, shooting pains and then the nerves and musles will all tighten up and then go into a spasm. Do you get pain with it as well? I often have to rub the bejeepers out of the affected area until the muscles begin to loosen up again.

I think this probably has something to do with poor circulation because of swollen blood vessels. I find that these spasms often happen when the affected area has been swollen and more painful than usual-- which leads me to think that its the swelling pressing on the nerves, muscles, and underlying tissues. I can actually feel when my vessels inside are being attacked and inflammed-- I call it my blood vessel pain. No doctor ever understood what I was talking about, and would say that there is no such thing. But the fact is that Behcet's is basically a disease of the blood vessels. Our symptoms and pain come from the fact that our blood vessels (everywhere and anywhere and of all sizes) are being attacked by our immune system which causes tissue damage to the vessels and inflames them. So it only makes sense that we have this kind of pain.

I don't know if any of this has helped--

Best wishes

Jenna

[Zebra]

Hi both,

Jenny, an excellent explanation. You are spot on! Which medics ate you both.under? Are you in the UK?

I have been diagnosed.with this 3 years and get this a lot.

Medicine that helps me 30mg amitriptyline at night.

Things that help include electric blanket, cold wet flannels, baths and showers, being outside it the cold.

[Roxybaby]

That was a fantastic explanation, I couldn't of explained it better myself. That's exactly what happens to me. Thank you I am finally beginning to understand this disease a bit better.

The cold helps me too,

Hope we get answers for this awful disease!!

[debiwad]

Yes, I know this feeling also, I have had Behcet for 20 years now, my doctor retired recently who was a star. The doc at the hospital now, is not to good basically wants the day to end so she can go home.

[nicolakate]

Another good medication for nerve pain/problems is Gabapentin. I have been on this for years (tried Amitriptyline first but this didn't help me much) and have had various doses depending upon how bad the nerve pain is.

You can get damage to your peripheral nerves and this can be diagnosed by a nerve conduction study. If you aren't seeing a neurologist yet you could ask to be referred to one for them to arrange this test/consider whether anything else would be more appropriate for you.

Good luck

Nicola

[caycay51]

thanx ever so much i will ask my doc to see if am allowed this drug because am on a lot of other meditcation already ie warfarin

[caycay51]

hi all you cud ask ur nero for a drug called baclofen it a muscel relaxing drug it mainly used for ms suffers but it doz help my legs

[Hidden]

Hi, I suffer from numbness in my fingers and toes mostly but occasionally get numbness down one side of my body as well. I take amatriptalyne which seems to help. My electric blanket is a godsend. Neurologist has said I get this as I have periphial nerve damage cause by BD. They have suggested Gabapentin but and hanging on to using amatriptyline at the moment. CG x