Hello Pamela. I also just found this website, although I've add Raynaud's disease for years. I can try to understand what you are going through because last December, I had five toes that hurt so bad, i though it's finally time to go see a doctor. Maybe he can give me a cream or something for the pain.
Well, he really scared me when he mentioned amputation. He told me to go home and stay home from work for at least a week with my feet up and keep warm warm warm. It really did wonders. Now, whenever I feel my toes really getting infected, I take a sick day or work from home where I can stay warm. My office is cold and even if I complained, nothing changes. I get so frustrated being cold all day. The doctor also told me to take baby aspirins, but I find that doesn't seem to help at all. Try to get your feet up and stay warm warm.

Thank you Rosalie. I am so glad that you have a boss who understands your condition and allows you to take care of yourself the way you need to! I know the pain you go through. I appreciate you sharing your journey with me. My MD said I would make a great case study. Those words are never good when they are associated with a condition. I have read that vitamin E is supposed to allevaite symptoms. I have about a three week wait to see the Rheumatologist. I am sure I will get told what his prognosis is for me and how I am supposed to take care of myself from here on out. . . Please stay in touch! Pam

Hi Pamela
I just found this site as well. I have had my entire feet, hands and nose turn purple, white, blue. I am on medication which helps a lot! I find masssaging the affected area helps to circulate the blood and I make a conscious effort to do this because I don't always notcie when the circulation is being lost. Hope you are doing well.

hi pamela, ive not been on here for a while as i thought my daughters condition was improving, but it looks like it isnt, my daughter has lost 2 finger tips and is only 7 years old. i have been so worried but for the last 6 months she has been on steroids and i saw a massive improvment with the attacks. her doctor decided to take her off the steroids as they were causing other problems and her condition seemed to be improving. since the steroids have been stopped she has developed yet another scab on a third finger and looks like it is turning funny again. The doctors are now saying that it looks like there is an underlying cause and mentioned scleraderma. I feel like i am going through this with my daughter, and the emotional pain is unbearable, i really hope you are having the support off your family and friends as its such a worrying time. I have had the pain of my daughter getting bullied at school because the steroids caused her get very hairy arms, but in times like this all you can do is be strong and try anything possible to help improve the condition. My thoughts are with you x

Becci,

My heart and thoughts are with you and your daughter! That baby has been through so much already at such a tender age. Yes, there is primary Raynaud's and secondary. Secondary means it is being caused by another disease. Lupus and Scleraderma are some that are usual suspects. Simple blood tests can show theses. Ask for a complete work up please. I eventually saw the rheumatologist and he gave me a medicine that dropped my blood pressure so much that I passed out with my 9 year old being the old one in the house. Having low blood pressure to start does not help. The hope was that if they dropped my bp, I would get extra blood to my feet. I have an MD who thinks outside the box. He had me go to a compounding pharmacy and they made a cream for me to relieve pain and with bp medicine in it so it wouldn't run through my whole system. I was then referred to a vascular surgeon. He had me do ice submersion tests today at the hospital. 1.5 minutes in ice water really is a long time. I did not do too well. I will get the results in a week. I completely understand the pain you and your daughter are going through. As for the bullying, I am a certified principal and can tell you that all states have anti-bullying campaigns. More importantly, they have a duty to act! Please report and document dates and times. The school has to stop the torment if for nothing else but that they can be sued. I know you have plenty of concerns but this might be useful information. Please keep me informed!

This is a late reply, but also jut found this site. I had skin ulcers under my toenails for two years straight, which my doctor would not believe were from raynauds. I finally went to a podiatrist last year, who thankfully had a wife with raynauds and recognized it right away. He ended up cutting my toenail off to speed the healing and prescribed a topical antibiotic and nitroglycerin patches to apply directly to my feet.

The pharmacist was so confused when he got the scrip he asked me to explain! He had never heard of using the nitro patches this way. But it worked great and healed before the infection forced any worse treatment. This winter I wore toasty toe inserts between two pairs of socks daily and used the patches during the coldest months to help circulation. I also have a space heater under my desk that I turn on as soon as I get in my office.

I was once told never rub when have an attack, it hurts the vessels when doing this. soak in warm water. Hope that helps:)

Hi Guys. Any of you relate? I don't take showers as much as I want to. Because it's too cold. Brrrr... I also have Multiple Sclerosis. Do any of you have ideas about supplements/vitamins which help multiple sclerosis, lupus, & Raynaud's. ?
Thank-you :-)