Raynaud's Disease - Can anyone help..?

I live with Cerebral Palsy and Fibromyalgia and the last 3 to 4 years my feet have progressively got colder and colder. I suffer poor circulation and extremely cold feet and hands. I dress well with thermals and Merino wool socks, plus thick sheepskin boots but still find my feet are like blocks of ice and numb from the knees down. I also wear warm gloves most of the year as my hands get cold as well. This year has been the coldest I've ever been and I'm concerned of the long term affects like frostbite.

A nursing friend suggested I might have Raynaud's Syndrome/Disease and I would appreciate anyone's help and suggestions about this possible prognosis?

Thanks for your help and support, Mike

Was at my Dr Thursday of this week and he strongly supports Raynauds Phenomena as I have most of the symptoms. He has ordered full bloods and is checking my thyroid levels first but I was told that there's not much medical support to help with this cold and painful problem. My best advice was to protect my hands and feet as they can be damaged because of the numbness in my extremities. Another of Ben's friends communities for Fibromyalgia support, I found someone with the same problem. She said to always wear a hat and keep my core body as well insulated and warm as possible, like ski jacket and heavy woolly socks and gloves. Better to over dress as it's easier to unzip a jacket or take off a hat if you are over dun, than to wait till your fingers and toes start to throb with pain. She also has a bath mornings and again just before bed as this is the only way to warm up your legs and arms at the same time.

It did help to have a possible diagnosis as I knew that there was something wrong with my body as I couldn't explain why I was so cold... Just need to get my head around another new way of living, as I really love the outdoors...

Hello Mike,

Hopefully you are still part of Ben's Friends Community and will be recieving this comment, if not I will respond for all others who share this condition with us. I too belong to the FMS site, as well as PsA and was the first to be counted for Sjogren's.

Ever since I have had any recollection have always had freezing cold feet and hands, it is not something that came on suddenly, but has become a big challenge. I have to be more careful of the water temp that I wash my hands in, it is very troublesome trying to shop or cook, just going near a refrigeration area of a Grocery Store will make me 'thump'.

I just spoke with a Doctor's wife today who said her husband has this as well and attributes it to medication. He wears heated gloves, and I know what they are as I just saw them in the Pharmacy, just need to make sure they cover my wrists, as they hurt worse than my hands and feet.

It helps to get moving, get the blood circulating as much as possible, hot baths are also a must to take the chill off us.

The blood vessel dilation med has had no noticable benefit, so I would recommend that you begin to get to know where the hunters and hikers shop for their outdoor clothing and find out all you can about the warmest clothing, how to layer it, even the heat packs you can put in gloves or pockets, there are even socks heated with batteries!

Carry gloves with you at all times especially when grocery shopping.

Please join our Raynaud's group, we are currently 6 strong and would like you to join us and be counted to raise awareness of our plight!

SK aka Susan