1. < Autoimmune Diseases
Mentor

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

Posted by Terri Martin, Volunteer Mentor @windwalker, Apr 27, 2018

Anyone want to talk about Raynaud's Syndrome? My daughter has a severe case of it. I would like to start a support group here on Connect to find others, share our stories, treatments and managing daily life.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 2, 2022
In reply to @stitch25 "I am thrilled to have just found this group. I was diagnosed with Raynauds two years..." + (show)
@stitch25

I am thrilled to have just found this group. I was diagnosed with Raynauds two years ago by my podiatrist. After reading up on it, I believe I have been living with it for decades and never knew it was an autoimmune disease. The freezing pain in my toes and fingers is the worst, it will sometimes radiate up my legs and arms if I cannot source warmth to stop it. the discoloration has been especially bad in my toes. I wear wool socks 365 days a year, and I always have a hoodie and gloves in my car or at work no matter what season it is. I get especially cold when I lay down to sleep at night and sometimes I even sleep with my gloves on. One thing that has helped slow down the symptoms for me is to completely change my diet to avoid all inflammatory foods, especially anything with sugar or grain of any kind in it. The Raynauds is still with me, but symptoms became far more manageable when I made those changes. I HATE shopping in the refridgerated section for anything at the grocery store! that is a painful experience. For pain management, I use topical treatments: solanpas patches cut in small strips to wrap my toes, or voltaren ointment, as I will not take drugs.

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@stitch25 it certainly sounds like you have things under control. I agree with shopping in the refrigerated section! I usually have to wear a coat and mittens! oh @stitch25, i forgot to welcome you to Mayo Clinic Connect! We’re a community of people who share their experiences and help each other. I’m so glad you found us!
Do you have any other autoimmune diseases? I hope not! Take a look at all the groups and discussions. Hope you can stay with us

REPLY
sav4 | @sav4 | Jun 3, 2022
In reply to @kanaazpereira "@dash99999 @rpswanson1 @melissa23 have also mentioned Raynaud's Syndrome, and I hope they will join this discussion..." + (show)
@kanaazpereira

@dash99999 @rpswanson1 @melissa23 have also mentioned Raynaud's Syndrome, and I hope they will join this discussion and share their insights. @kariulrich, I recall you mentioning Raynaud's and developing chilblains a while ago?

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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

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 3, 2022
In reply to @sav4 "Hi, I'm Cindy and would like to join this discussion as I have Raynaud's and have..." + (show)
@sav4

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

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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?

REPLY
1 reply
dipperlip1 | @dipperlip1 | Jun 3, 2022
In reply to @stitch25 "I am thrilled to have just found this group. I was diagnosed with Raynauds two years..." + (show)
@stitch25

I am thrilled to have just found this group. I was diagnosed with Raynauds two years ago by my podiatrist. After reading up on it, I believe I have been living with it for decades and never knew it was an autoimmune disease. The freezing pain in my toes and fingers is the worst, it will sometimes radiate up my legs and arms if I cannot source warmth to stop it. the discoloration has been especially bad in my toes. I wear wool socks 365 days a year, and I always have a hoodie and gloves in my car or at work no matter what season it is. I get especially cold when I lay down to sleep at night and sometimes I even sleep with my gloves on. One thing that has helped slow down the symptoms for me is to completely change my diet to avoid all inflammatory foods, especially anything with sugar or grain of any kind in it. The Raynauds is still with me, but symptoms became far more manageable when I made those changes. I HATE shopping in the refridgerated section for anything at the grocery store! that is a painful experience. For pain management, I use topical treatments: solanpas patches cut in small strips to wrap my toes, or voltaren ointment, as I will not take drugs.

Jump to this post

I also have Raynauds but not as severe as you. During the day my toes are blue and purple. My hands are not to bad. I also have the opposite, which is called
Erythromelalgia which makes my feet and lower legs intolerant to warmth and heat. Especially at night. I go to bed with ice old blue feet and wake up about 2 hrs later with my feet extremely hot/burning red and swollen. The only thing that gives me some relieve is Aspercream with Lidocaine since meds for one would aggravate the other. This has been going on for 16 years when I was first diagnosed by Mayo's. In the last 3 years I added neuropathy to these conditions and I was told that this happens quite frequently. Still looking for answers, so don't give up.

REPLY
2 replies
wiedd | @wiedd | Jun 4, 2022
In reply to @dipperlip1 "I also have Raynauds but not as severe as you. During the day my toes are..." + (show)
@dipperlip1

I also have Raynauds but not as severe as you. During the day my toes are blue and purple. My hands are not to bad. I also have the opposite, which is called
Erythromelalgia which makes my feet and lower legs intolerant to warmth and heat. Especially at night. I go to bed with ice old blue feet and wake up about 2 hrs later with my feet extremely hot/burning red and swollen. The only thing that gives me some relieve is Aspercream with Lidocaine since meds for one would aggravate the other. This has been going on for 16 years when I was first diagnosed by Mayo's. In the last 3 years I added neuropathy to these conditions and I was told that this happens quite frequently. Still looking for answers, so don't give up.

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I am same....almost exactly. Reyanauds and Erythromelalgia.
I have had the chilblains as well. I exacerbated the issue by trying to warm myself in a hot tub, immersing my feet as well. That is a bad idea. The blood will pump into the digits, then cannot return. The only thing that’s had helped me though it was to protect the ends of the toes with silicone toe caps.....and do not immerse feet in hot water. Baby bottle warm at the most.
This post won’t let me link to a website, but just do a web search for “silicone toe protectors” .

Good luck.
PS...I’ve also used them at night with a little healing cream on the ends of the toes (polysporin...if you know what that is).

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 4, 2022
In reply to @wiedd "I am same....almost exactly. Reyanauds and Erythromelalgia. I have had the chilblains as well. I exacerbated..." + (show)
@wiedd

I am same....almost exactly. Reyanauds and Erythromelalgia.
I have had the chilblains as well. I exacerbated the issue by trying to warm myself in a hot tub, immersing my feet as well. That is a bad idea. The blood will pump into the digits, then cannot return. The only thing that’s had helped me though it was to protect the ends of the toes with silicone toe caps.....and do not immerse feet in hot water. Baby bottle warm at the most.
This post won’t let me link to a website, but just do a web search for “silicone toe protectors” .

Good luck.
PS...I’ve also used them at night with a little healing cream on the ends of the toes (polysporin...if you know what that is).

Jump to this post

Here is a link for silicone toe protectors from Amazon:
https://www.amazon.com/silicone-toe-protectors/s?k=silicone+toe+protectors

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 4, 2022
In reply to @sav4 "Hi, I'm Cindy and would like to join this discussion as I have Raynaud's and have..." + (show)
@sav4

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

Jump to this post

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?

REPLY
stitch25 | @stitch25 | Jun 4, 2022
In reply to @dipperlip1 "I also have Raynauds but not as severe as you. During the day my toes are..." + (show)
@dipperlip1

I also have Raynauds but not as severe as you. During the day my toes are blue and purple. My hands are not to bad. I also have the opposite, which is called
Erythromelalgia which makes my feet and lower legs intolerant to warmth and heat. Especially at night. I go to bed with ice old blue feet and wake up about 2 hrs later with my feet extremely hot/burning red and swollen. The only thing that gives me some relieve is Aspercream with Lidocaine since meds for one would aggravate the other. This has been going on for 16 years when I was first diagnosed by Mayo's. In the last 3 years I added neuropathy to these conditions and I was told that this happens quite frequently. Still looking for answers, so don't give up.

Jump to this post

Yes I have had the swelling as well. I stopped wearing rings more than a decade ago because it would come out of nowhere and my hands and fingers would just swell up. It was too painful to wear rings, even those little rubber ones. My husband was upset at first when I would not wear the wedding band but now he understands. For the longest time I just thought it was arthritis. If it wasn't the swelling, then the metal ring was making my hand freeze. So I wear a lot of earrings cause that's the only jewelry I can wear that doesn't hurt me! 😉

REPLY
sonya_nc | @sonya_nc | Jun 6, 2022

I was diagnosed w/ Raynauds in 2008. At first, the flares were random and now every day. It has progressed from hands to also include my feet.
I was referred to rheumatology. I have only had one treatment that helped for a few months- Botox injections in the web part of my hand. Johns Hopkins rheum does this procedure regularly and I tried to convince my NC docs to do it- was only done once as “trial” and it made a tremendous difference in the intensity and frequency of episodes. It was not covered by my insurance so I’m back to wearing layers… my rheum did prescribe some blood pressure meds that help some folks, but those did not work for me given some low blood pressure issues I have.

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