Raynaud's Syndrome

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.

@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?

Jump to this post

Teri This is strange I know you,ve had her to her Dr.I would run the gamet first I'd take her to endocrinologist the cardiologist keep me posted. Good luck also a rheumatologist find the best ones for your daughter

REPLY

Hello,
I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things to help manage it. I was diagnosed with Secondary Raynaud’s stemming from lymphoma. It’s mostly in three fingers on my right hand at this point. It started in one finger last summer, then spread. Cold weather makes it worse. My neurologist suggested taking beta-blockers next winter to help. The fingers start hurting, then turn white, then blue. Sometimes the blue stays for a few days. If I’m at home, I’ll wrap a warm heating pad on the hand for awhile to help settle it down. Sometimes it’s mildly painful, other times more severe.
I hope your daughter can get some relief.
~ Andilynn

REPLY
@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?

Jump to this post

I had come down with similar symptoms including other things they said I had. I found out one issue was an allergic reaction to a prescription they gave me which was bactrin which is a statin antibiotic. I discovered this when I stopped it as I was taking 3 times a week to prevent lung infections. None of the specialists caught it and I showed and told them all about the inflammation, hives, peeling sking…… They have a tendency to blame skin issues on autoimmune cases. They all have similar symptoms. It is a difficult field for them and not enough research is done to really rule out reactions to the prescriptions they give you for additional things that come up as you go through various reactions to chemicals, food, vitamins and prescriptions. I had to document and really watch effects of everything I ate or took, including supplements. I'm much better now as I actually started discontinuing prescriptions such as plaquenil and gaberpentin (sp) as they are band aids for pain and tylenol works when I do have pain issues. Recently I discontinued Cellcept and so far (after several months no negative effect (I slowly reduced to zero). I did tell my doctors what I was going to do as I can always start them up again and I was willing to go through the discomfort (if I had any). I blame my calcinosis on the medications and I think it was plaquinel or the immune suppressant. That has not gone away but it isn't creating new sites anymore. If anyone has calcinosis and they are taking any of these medications and it showed up after they were on them for a month or ??? let me know. Nobody does research on this and I had to experiment before everything got really bad. My friends can't believe how good I'm looking, hair growing back, gaining weight and a jump in my step. I feel very fortunate and this may not work for you or others but I'd sure like to know if anyone has gotten the calcification under their skin (hard lumps) or even ossification where calcium is growing on the skeleton.

REPLY
@proudindian

I have a difficult time during the summer, or anytime the AC is on. Taking a shower is an event. As soon as i get out the shower my entire body feels like someone poured acid on me. The cold air burns.

Jump to this post

@proudindian, hopefully it is only to change medication doses. They probably found a level that was off in your lab work. Please keep us posted.

REPLY
@oregongirl

My daughter was diagnosed when she was about 15. As she grew older she tried to convince herself that she did not have it. Just about then, she is now also diagnosed with RA. She is 52. She is faithful about exercise and her eating habits. I do not know how she does it, but not take anything other than Tylonl. She is SO strong.

Jump to this post

HI WNDWALKER, IT IS GREAT MEETING ALL YOU GUYS. I ALSO HAVE RAYNAUD'S ALONG WITH MAC, INTERSTITIAL PULMONARY ,SJOGREN'S , PHIEBITIS, CAP, COLON CANCER. I HAVE LEARNED MORE IN DETAILS ABOUT ALL OF MY CONDITIONS FROM ALL OF YOU THE DOCTORS ONLY GIVE A LIMITED BRIEFING AND AFEW RESEARCH PAPERS. BUT EACH DISEASE TAKES ON SYMPTOM CHANGES AS TIME GOES ON.. EACH TIMES TONS OF TEST ARE NEEDED TO CONFIRM ANEW DISEASE HAS NOT MOVED IN , IN JOIN THE REST OF THIS CLAN, WHO IS ALL LIVING IN MY BODY .IT'S NOT AS SCARY SINCE I HAVE BEEN SPENDING TIME WITH YOU GUYS. I'M 68YRS. OLD AND YOU ARE MAKING MY DAYS A LOT LESS STRESSFUL. THANK YOU, FROM CAJUN LAND, TONI ANN

REPLY
@oregongirl

My daughter was diagnosed when she was about 15. As she grew older she tried to convince herself that she did not have it. Just about then, she is now also diagnosed with RA. She is 52. She is faithful about exercise and her eating habits. I do not know how she does it, but not take anything other than Tylonl. She is SO strong.

Jump to this post

Welcome toni68 Its good you found this group there,s alot of information here I have fibromyalgia,fracture back,fr.ankle other back problems. I am a retired nurse and write about some information that I know , I also have sjogrens..

REPLY
@oregongirl

My daughter was diagnosed when she was about 15. As she grew older she tried to convince herself that she did not have it. Just about then, she is now also diagnosed with RA. She is 52. She is faithful about exercise and her eating habits. I do not know how she does it, but not take anything other than Tylonl. She is SO strong.

Jump to this post

@toni68 Hi Toni Ann. Great hearing from you. Safety in numbers! I too feel a lot better with the comradery on Connect. How are you faring with Rayaud's and MAC?

REPLY
@oregongirl

My daughter was diagnosed when she was about 15. As she grew older she tried to convince herself that she did not have it. Just about then, she is now also diagnosed with RA. She is 52. She is faithful about exercise and her eating habits. I do not know how she does it, but not take anything other than Tylonl. She is SO strong.

Jump to this post

@toni68 Good Lord Toni, you have had a lot on your plate healthwise! I didn't mean to minimize your other issues by asking only about the mac and raynauds. Most importantly, have you got your cancer gone? Are you doing ok now?

REPLY
@oregongirl

My daughter was diagnosed when she was about 15. As she grew older she tried to convince herself that she did not have it. Just about then, she is now also diagnosed with RA. She is 52. She is faithful about exercise and her eating habits. I do not know how she does it, but not take anything other than Tylonl. She is SO strong.

Jump to this post

Hi Toni Ann, I'll be 68 yo in a couple months. Sometimes I feel very much alone fighting the good fight. It seems the older we get the less we have as a support group. But, these interactions are very helpful.
I'm new to connect. So far, everybody seems very helpful and reassuring. I'm glad that you are feeling less stressed. Getting old is not for sissies. Can't remember who said that, but now I understand! Hope you have a good evening!

REPLY
@oregongirl

My daughter was diagnosed when she was about 15. As she grew older she tried to convince herself that she did not have it. Just about then, she is now also diagnosed with RA. She is 52. She is faithful about exercise and her eating habits. I do not know how she does it, but not take anything other than Tylonl. She is SO strong.

Jump to this post

@mrlncrvn Hello. Welcome to Connect. Ha! I heard a similar saying "you gotta be tough to get old".

REPLY
@windwalker

@ccubed Like many syndromes and diseases; there are varying degrees of it. I am glad that your's isn't very bad. Did your's calm down as you got oldet?

Jump to this post

@ccubed That is good to know that sometimes a change in climate helps. Where in Az do you live? I lived in Tucson for 20 yrs. The altitude was hard on my lungs and I have since moved to a town in S.C. and am doing better here at sea level.

REPLY
@ggopher

I’m in. A quick read of the posts puts me right into this group. I’m in Texas and carry a sweater and often gloves everywhere I go. People think I’m nuts. Good thing I’m 73 and some eccentricity is expected. Stores and even church cause my hands to go frozen and burn because they are so cold. I’ve also got Parkinson’s and a few other things and no idea yet if any of them are related. I’ll ask at my next Dr visit but I would assume not or it would have been mentioned before.

Jump to this post

@hgopher I don't know, I think they are learning more about autoimmune diseases and are finding many are related. I hope you will come back on and share your doctor's thoughts about it. Good luck with the dr visit!

Liked by lioness

REPLY
@grandmapark

have any of you used Magnesium to help?

Jump to this post

@grandmapark , I had read that magnesium is good for building up your immune system. I bought a bottle of it and take it every other day.

Liked by lioness

REPLY
@andilynn

Hello,
I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things to help manage it. I was diagnosed with Secondary Raynaud’s stemming from lymphoma. It’s mostly in three fingers on my right hand at this point. It started in one finger last summer, then spread. Cold weather makes it worse. My neurologist suggested taking beta-blockers next winter to help. The fingers start hurting, then turn white, then blue. Sometimes the blue stays for a few days. If I’m at home, I’ll wrap a warm heating pad on the hand for awhile to help settle it down. Sometimes it’s mildly painful, other times more severe.
I hope your daughter can get some relief.
~ Andilynn

Jump to this post

@andilynn Thank you. I had read online that it is a good idea to swing your arms regularly to make your blood get forced down into the small capillaries by centrifugal force. Done on a regular basis is supposed to stretch the narrowed capillaries.

Liked by lioness

REPLY
@windwalker

@ccubed Like many syndromes and diseases; there are varying degrees of it. I am glad that your's isn't very bad. Did your's calm down as you got oldet?

Jump to this post

I had hands and feet cold in Pa moved to Calif now just cold feet but the lack of humidity has helped me with my fibromyalgia and arthritis here

REPLY
Please login or register to post a reply.