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Anyone living with Raynaud's?
The last discussion I could find on the topic was from 2017 and just a single question and response. Would love to engage with folks who are dealing with and/or experienced with the syndrome.
I've suffered from the symptoms most of my adult life but was only officially diagnosed about 2 years ago. It was a relief to be able to put a name to it but frustrating to learn that there is no cure and doesn't seem to be any effective treatment. At least nothing my doctor or I can find. I've been diagnosed with primary Raynaud's which is a relief, as it doesn't seem to be a result of some other disease such as Scleroderma but my doctor continues to monitor just in case thing progress.
I tried Sildenifil which was unsuccessful. I'm currently on Tadalifil (started at once/day now up to 3x/day) which has worked a bit better but not much. My doctor also just started me on a twice per day regimen of Hydroxychloroquine. I can't tell yet whether it is helping as the weather is also starting to get warmer which usually helps to ease symptoms a bit.
I would love to hear from others what info they've learned, medications they've tried, advances they've heard of, or tricks/tips they use to counteract the symptoms. New here so thank you in advance.
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I have raynauds and peripheral neuropathy. I was just prescribed nitro- glycerin cream for my toes. It has helped. It works for about 8 hours or so. It can be applied every 12 hours.
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2 ReactionsTouching a couple related topics…
It hurts to open a screw top or flip top such as a honey jar or toothpaste tube. I use a rubber square but flip tops are still difficult. Hand strength and coordination are okay. I cannot control my body temp and believe this contributes to the flares. The cold feels like it’s from the inside out.
There is little meat on my finger tips and they look like prunes. Rheum doc increased meds and this helped with purple finger tips and bruising on palms.
It’s over 100 degrees outside and I am wearing 3 layers of clothes and Uggs.
I’m having a pity party this week because I feel humiliated. I need a shot in my leg for IT Band inflammation and I limp to prevent falling. Leg swoIlen and numb before it hurts, and the pain doc cannot give me a shot until it hurts. I meet with a group of people on Saturday morning and an orthopedic surgeon gave me some free advice. “Use ice.” I thanked him, no need to elaborate. He meant well. I feel like an outlier. Raynauds + ice=trouble. I wear layers of clothes for a reason, not a fashion plate. Maybe I’m too sensitive, should be used to difficulty with uninformed docs.
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2 ReactionsI am so sorry you have it so bad. I just have it in my toes and fingertips. If they are kept warm, I feel okay. It all happened after I had surgery, the nurses noticed it. I never knew it would be as bad as you have it. No ice Gee what bad advice. I wish I had some magical help for you. It sounds like you are in pain all the time.
I know how that feels. I have constant pain. I am at a level 8 most of the time and pain meds brings it down some. When I am real bad pain I get very cold and that goes away with a pain pill.
Does sitting in the sun help? What about heating pads? I have one that does on my feet. One I lay on and one for my back and neck too. They can be expensive to use all the time. I am looking for a solution. I can not use the ones that give moist heat that you heat in the microwave, they really bother me... I hope you do not live in the colder weather zones. Fall is coming here now, and I get cold in the fingers and toes ore. Wish I could take away all your pain and this terrible condition you have.
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2 ReactionsI'm so sorry to hear how awful it is right now.
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3 Reactions@krisingle1 Welcome to Mayo Clinic Connect (MCC) ! I’m glad you found the site. Do you have Raynauds? If so, ask any questions you want and members will be glad to help you!
My I ask, how you found MCC?
HLMM,
Chronic level 8 is life changing. I cannot imagine how you feel everyday and admire how you cope.
I live in a warm climate and I wish the heat made me more comfortable.
It’s nice to be able to reach out to others with similar experiences and get supportive responses and virtual reactions.
Thank you.
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1 ReactionHi Becky:
Thanks for the welcome. In the past I have thought I may have Raynauds. I am currently in the processed of being diagnosed - likely for EDS but possibly rheumatoid arthritis or raynauds. Are you aware of any overlaps? Thank you in advance for any responses from the group...
K
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1 ReactionI have raynauds since my 20s, never really a problem until blood pressure meds seemed to elevate the problem. Now fingers were not only numbing in the winter, but also becoming a problem in the summer with a/c on especially in the supermarket. Need to wear gloves with hand warmers even indoors, but it still didn't get to the point it did when I started Mycophenolic Acid 380mg, 2x daily for my autoimmune hepatitis. My meds have brought my AST/ALT numbers to what it should be, but really escalated the raynauds to the point my fingers went from being numb to turning white to now turning black. My numbers have been good for a year and am now taking same meds but 180mg, 2x daily. It wasn't until lowered dose that I realized it was the meds that increased Raynauds symptoms. Still have raynauds, but manageable. I don't know what caused my raynauds, as I don't know what caused my AI, but I know meds did make raynauds worse. If your symptoms are getting worse, and most likely you're on some meds, it could be one of them making symptoms worse. I hope my numbers stay good because if they go back up I'll need to go back to higher dose. Good luck to you, Lord knows we need it!
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