Raynaud's Syndrome: Anyone want to talk about Raynaud’s?

Good morning @sonya_nc . I’m really sorry to hear about your hands and the difficulty finding/getting treatment. Have you checked with rheumatologists at major medical centers or university hospitals? Knowing that there is a treatment but you can’t get it must be so frustrating! What was the doctor’s response when you explained that it worked well for you?
Maybe you can find a hospital or doctor near you who can help.
https://health.usnews.com/best-hospitals/rankings/rheumatology
Explain about your insurance problem and maybe the doctor has some answers.
Have you tried talking with insurance?

Thanks so much. I've accessed that link when I was diagnosed.
Good information to have. Yes the treatment prescribed by my dermatologist has considerable reduced the pain.

I have experienced Raynaunds for many yrs. with my UCTD . I have had to take blood thinner for another problem ,but as a side benefit my episodes of Raynauds are much less frequent even in winter months. I take Xarelto 15 mg. per day . I do not have a blood clot issue so I am taking Xarelto off label. Maybe it would help you ?

I’m so sorry to hear of your pain and other issues.
The first thing that popped into my mind when I read your note was “why are the medications that don’t work for you covered by your insurance, and those that clearly have benefit are not”. Hmmm....we have the same issues here.

When I was first diagnosed with MCTD the Raynaud’s was severe in my hands, feet and nose. With all my meds, including Norvasc, my hands are much better. In the winter mittens keep you hands warmer than gloves. Make sure to wear layers to keep your core warm.

My 17 year old son has recently developed Raynaud's in his right foot. It is brought on by exercise (vibration). He runs cross country and track, plays basketball, and loves ice hockey. Any of this triggers excruciating pain in his foot. Sometimes the foot turns white but not always. Today, while shooting hoops, he also had pain shooting up his leg before the foot began hurting. His doctor has started him on 2.5 mg of amlodipine besylate and we will increase the dosage since this isn't helping. Any other suggestions?

I have had Raynaud's for 30 years and would suggest first getting a complete autoimmune workup by a rheumatologist. There are medications that may help. Here are a few things I have found helpful over the years:
1. Don't ignore it when your fingers start to turn colors (white, especially). You need to warm your hands under very warm/hot water until the color returns. This is because the blood flow is leaving your fingers and you could have tissue damage if you don't warm them up.
2. If your fingers are cold GLOVES DO NOT WARM THEM UP! You need to ADD HEAT with hand warmers or semi-hot water until the blood returns, THEN put on gloves. Gloves are for keeping the heat in once your fingers return to normal color. Even the heated gloves usually don't work if your fingers are white/purple.
3. Buy plenty of disposable hand warmers and keep them with you at all times (purse, pockets, car). I buy them by the case. Try to keep your hands from attacks by wearing hand warmers in your gloves/mittens or opening a pack and putting them in your pockets before they turn colors.
4. Most likely your toes have Raynauds, too which you may not be aware of. Buy toe warmers for your "little piggies".
5. Yes, you need hand-warmers even when it's hot outside. Raynaud's is most often triggered by a temperature change and when you go into an air conditioned environment, it will trigger an attack.
6. Be pro-active. Before you go out into the cold, put your gloves on. Before you go into a cold environment (air conditioned movie theater) put your gloves on.
Hope this helps!

Buy disposable toe warmers. There are also full-sole feet warmers. You can buy these on Amazon (no, I don't own stock!).

@adamsthorn I think all the suggestions from @andigreeneyes are just great! Tell your son to be strong keep fighting!

I thought I had Raynaud's since I was in my early 20's and that was over 50 years ago. In 2018 I was diagnosed with ITP which is an autoimmune disease that attacks blood platelets which causes heavy bleeding and bruising. The hematologist ordered a bone marrow biopsy and further blood test and determined that I not only had ITP but also Cold Agglutin Disease. CAD is autoimmune disease with attacks your red blood cells when you get cold. You may want to have your doctor look into that possibility.