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Raynaud's Syndrome: Anyone want to talk about Raynaud’s?
Autoimmune Diseases | Last Active: 21 hours ago | Replies (239)Comment receiving replies
Hi, I'm Cindy and would like to join this discussion as I have Raynaud's and have for years. Two weeks ago I developed chilblains. Mine have become very painful and today I returned to Mayo. My dermatologist prescribed Clobetasol Propionate Cream, USP, 0.05% and white vinegar and water solution applied with gauze for 10 minutes 2 x a day. Just started with the vinegar soaks this afternoon. I never thought my Raynaud's was very severe even while living in Richmond, VA. However, these chilblains are really painful. I have a burning sensation
with huge blisters filled with fluid. Flip flops have become my best friend since the thought of slipping on closed toe shoes makes me cringe. Living in Florida, it puzzles me as to why I've developed these because my feet are very rarely cold. My dermatologist ordered blood work to see if any other autoimmune diseases were present. Not fun
Replies to "Hi, I'm Cindy and would like to join this discussion as I have Raynaud's and have..."
Hello Cindy @sav4 welcome! Thank you for joining the conversation. Chilblains....nasty!!! I am sorry you are dealing with them on top of Reynaud's. I had an out break of chilblains and did not have a clue what they were. I could not wear shoes, my toes were blistered, purple, blue and grey and very painful. I used to put ice on my toes to numb the pain and itch. That probably made things worse but I didn't care at the time when I was up all night and miserable. They looked like monster feet and my toes were swollen like little sausages I soaked my feet in tepid water Epsom Salt baths. Air, distraction and time were key. As @dipperlip1 mentions, Aspercreme and Lidocaine topicals may work, but ultimately chilblains needs a stronger script.
My experience was confusing. Like @wiedd mentions neuropathy possibly tying in, I had just been diagnosed with small fiber neuropathy. I swore I had Reynaud's and was seen by a dermatologist, a vascular specialist and cardiologist to rule out other concerns. It was chilblains, but my neurologist blamed my purple, blue, grey feet bottoms that looked like I stomped grapes, on neuropathy. Later, it was determined that I had Central Sensitization Syndrome (CSS) which is a Central Nervous System and Peripheral Sensory Input disorder.
My body was in a heightened state at the time and doctors were ruling out all sorts of diagnoses and possible autoimmune diseases. Ultimately understanding that CSS was present, helped piece things together for me.
I still get discolored feet be it bright red from heat or purple from cold, and I stay out of hot tubs or any extreme temps to keep my body temperature regulated as best as possible. I try to avoid frozen hands and feet by balancing temps and activity. Sometimes it works. If I overheat I get red blister like bumps on mostly arms and legs but can spread. Skin sensitivities are part of CSS.
Cindy, may the force be with you while you ride out chilblains. May they never return. It does seem strange that you live in Florida and got chilblains. Maybe CSS helps to explain that weird things can happen and sometimes some of us are just more susceptible. Will you please keep us posted on your bloodwork results and if any autoimmune is present?
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Welcome Cindy @sav4, Thanks for sharing your experience with Raynaud's. I was not familiar with chilblains and found some treatment and lifestyle and home remedies for the condition on Mayo Clinic's page here - https://www.mayoclinic.org/diseases-conditions/chilblains/diagnosis-treatment/drc-20351103.
@raebaby, @rwinney, @patrickharraghygmailcom, and @simoneh have discussed chilblains in other discussions and may be able to share more information and their experience with you.
Is the treatment prescribed by your dermatologist helping reduce the pain?