Has anyone got any advice as this is driving me mad? I have always had bad circulation in my legs and hands but the past couple of years my legs and feet have gone terrible. Even in this hot weather I have to put my electric blanket on at night because they are painfully cold. It seems so stupid because I have a ceiling fan for my upper half of body and electric blanket for the waist down. I feel so sorry for my husband getting into a hot bed every night but even he can't believe how cold I get. Have even got chillblains at the moment!
Not sure if it is all connected but on the pain side of BD it is mainly from the waist down and have lost some use of my right leg (having Lumbar Puncture on 1st Aug). Does anyone think this could all be connected or is it a Behcets thing. Have read a lot on here about hot flushes and sweating which does happen to me waist up but haven't heard much about being freezing.
My doctor checked my pulse in my legs which are fine and even though you can't give me medical advice I would be greatful for anything else you can offer.
Thanks, Jo x
Written by
Wellington
To view profiles and participate in discussions please or .
I have mentioned before on postings that I get the freezing legs and hands and feet alternating with burning. This becomes quite unbearable and as you say nothing seems to help them warm up or more importantly, flow freely at an even temperature. Also get the hot flushing and sweating where I have to use a fan even in the winter.
I use warming oils such as ginger or juniper, black pepper, marjoram, cypress, lavender to massage the feet and legs. Always massaging towards the heart...meaning from the feet upwards....obviously you would need to be careful and not do it if you have any blisters/ulcers on the legs or feet.
I use them mixed with almond oil which is great for the skin, but start with a small amount [a couple of drops in a tablespoon of almond oil] and use one oil at a time to check if it helps or causes a reaction. If it is o.k you can add a drop or 2 more until you find the right level.
As you go through you can try each oil until you will find which helps the most and can blend them together if you want to.
I find cypress and lavender particularly helpful for circulation and muscle pain and the lavender helps to relax me and sleep better.
You can check with your doctors if you are worried about using the oils.
Thanks so much for replying I really appreciate it. My fan is on in winter too but I do get quite confused and frustrated when I am sitting in a boiling bed and my legs are like icicles.
Your answer was really interesting and I will definately try the oils one at a time at first like you said, although won't be able to at the moment as I do have quite a few ulcers on my legs. The cypress and lavender one sounds good and even if this helps a bit that would be a result.
I suffer badly from the same problem. I was told recently by a neurologist that the freezing MAY be a mixed message to the brain and it is actually pain. I've tried rubbing voltaren on them at night and it does seem to make a difference. I also never let them get cold (I wear cotton socks even in summer). An electric throw rug has made a big difference to me (wrapping legs in it).
Thanks for your reply I really appreciate it. When I last saw my neurologist there were so many problems to discuss I forgot to ask about some things so will bring it up in my next appointment, I really love the sound of the electric throw rug and will look into that. Not heard of voltaren so will look that up too.
Glad you are now back at home and hope you are feeling a little bit better.
Just noticed your question. I have a freezing cold right arm and shoulder and the same with my left ankle and some toes. For the top half I have pashminas in every colour to suit my outfit and even have it with me when on holiday by the pool or sea. At bedtime I wear long sleeve nighties usually and cut off the left arm. As for my feet I leave them free in the day but always wear slippers. At nighttime I use a lavender wheat bag tied to my foot. It means I get to sleep but sometimes wake when the heat has worn off, then slip a wooly sock on. I know how difficult it is when only certain parts of you body are always cold. And I do sometimes get strange looks from people with my one sock and pashmina or shawl in temperatures of 30 degrees plus. Hey but at least I am on holiday......
Thanks so much for the reply it is really appreciated. It's a difficult one isn't it because I have been in bed with thermal pyjama bottoms on, two lots of bed socks on and a hot water bottle and it doesn't make any difference at all but am always up to any advice. Will try the lavendar wheat bag and carry on trying to have a sense of humour. I too had strange looks off people when I sat outside with a blanket around my legs in the recent heatwave and have decided I don't give a fig what they think.
You have definately helped and it also helps to know that other people suffer from similar problems and that I am not a basket case.
Happy to help and I think we are all basket cases...lol
Yeh I am now 62 years young and have been suffering BD for 27 years but with age comes confidence and knowledge and I wear what I want, eat what I want, and often say what I think!!!!!
Try anything and everything until it fits you and your needs and figs to others.
On a serious note, what has kept me going is bringing up 3 wonderful boys almost alone. Having wonderful dogs....companions, helpers and gets you out and about and meeting people. Keep moving, keeping smiling and keep believing in a cure.
Many thanks Billi, will definately do all of the above and have already started to do what makes me feel better and not get upset by others. Although depending on what sort of day I am having it can be quite hard. You should definately be proud of yourself with everything you have acheived and as a mother of three I know it is hard enough with the help of my husband let alone doing it on your own.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.