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

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

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

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.

@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.

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

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..

@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?

@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?

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!

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