Diagnosed with Secondary Raynauds but wondering if I still have it?

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at first for about a year I had severe color change white, blue, red and then I had an flolan treatment a year ago and things started to change about 3 months after that. Now my fingers rarely turn white but are still painfully cold and they are more of a red color with a burning sensation...ouch

?Today I defrosted freezer and almost cried from the pain....although cold and painful they just went deep red and I guess I could compare to brain freeze only in my fingers...

?Please help if anyone else has symptons like this and what they've been told by their doctors..thanks

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  • Posted

    Did you have a follow up appointment.? I used to report my fingers were better or worse ( usually much better) and then the vascular surgeon would tell me to come again in about 9 months time when he would book me in for th next infusion. I had them for five winters and only gave up when My husband developed Alzheimers and could not cope without me. I did have a small bone removed from my wrist for arthritis and since then ( touch wood) my fingers change colour in the cold, but don't have the acute pain. Good luck with yours.

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    • Posted

      Thanks Jenny I'm waiting on admission for treatment now hopefully soon before winter hits

      So sorry about your husbands diagnosis wish you the best I'm sure it's very difficult for you.

      Again thank you and take care

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    • Posted

      Hi Jenny,

      How are you? Caring for anyone with Alzheimer's can be difficult...and your husband, I am so sorry.

      warm hugs

      judith

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    • Posted

      Hi Judith, Thank you for your concern and the hugs,( don't get many of those now). I am OK re the Raynauds, but am also recovering from two operations to remove my thyroid because of cancer found following a small stroke. Have just come out of hospital having had four days chemo to polish off the rest of the nasties. Just hope nothing else drops on me from on high, but I keep smiling and remain positive

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    • Posted

      Jenny,

      Me too...I had full body radiation six months after thyroidectomy

      You may experience some blue mixed in. Takes a bit to settle down and get used to a new normal.

      more hugs

      judith

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    • Posted

      How nice of you, Judith.

      At the moment I am so dry, coughing for England and really tired. Also want to tear the skin off my legs, but it is only  two and a bit weeks since I came home so think I am trying to run before I can walk. I know I will have to go back every three months for checks ,blood tests and scans.

      I am having a phone consultation later this week so am hoping the latest blood tests and scans are OK. They have mentioned some nodules in my lungs so I must remember to check on those. 

      How long did it take you to feel human again, I know everyone is different, but I would like my singing voice back? At the moment it resembles a corn crake!

      I went to the dentist yesterday and just about crawled home., but the receptionist's mum is having the same operation and after treatment soon and  has been worrying about it and the radioactive iodine afterwards so she now knows where to come to get her questions answered. Pleased to be able to help

      Thanks for the hugs

      Jenny

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  • Posted

    Hi Debralee,

    I too have secondary Raynaud's...before you put your hands into the freezer again put on gloves to protect you hands and fingers.

    Raynaud's is a constriction of the blood vessels which means you compromise the blood flow to your hands by subjecting them to cold.

    I also have it in my feet.

    kind regards

    judith

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  • Posted

    Hi Jenny,

    Warm hugs...the great news is that once your system settle, the blood monitoring goes to every six months...in my beginning I was every six weeks for about three years...and every time my antibodies would elevate, my stress level would escalate.

    But again good news, I have adjusted to the ebb and flow and have enough experience to ignore the antibodies because they always reduce by another blood draw three months later.

    Your voice...maybe...ya gotta know Rod Stewart...chuckle...well Rod and I had thyroid cancer together...no more Roxanne, went to Frank Sinatra stuff because of voice changes...mine has gone up quite a bit higher...used to be low alto.

    Skin...forever dry...in USA I use the ultra ultra dry skin lotion by Lubiderm...I slather it on...where I live it is 12% humitidy now, maybe lower...we have forest fires, fields that catch fire from a lightening strike...lost maybe 80,000 acres this year...heck, Fort Carson trains and sets their acerage on fire on a regular basis.

    So never, ever use soap again...I use shower gels, foaming hand cleansers, and scented shay butter offered by Bath And Body Works...and tepid water only...and only two showers per week.

    My hair returned curly in the back and straight up top...for me I had to search for a shampoo and conditioner that worked without having a soap base...went with Philosophy....also use them for facial...makeup was the worst until I found It Cosmetics.

    I am unfamiliar with products available in England...sorry.

    Normal ..it has been 15 years...not yet...my TSH is kept at 0.01 ...that said, you adjust to a new normal that includes tears that just come..my true friends and I are able to laugh.

    You will adjust...after some swings up and some swings down...and if you don't, I will need the name of your endocrinologist...

    more hugs

    judith

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    • Posted

      Thanks Judith,

      You made me laugh and cry at the same time and all your advice is so helpful except that here in UK most products you mention are unknown!

      I got my phone call yesterday from my key worker and she told me all my levels were going the right way and not to worry about the lung nodules as they were most probably from a previous infection, so that's one straw lifted off. She menioned thinning hair, but as I haven't lost any due to the form of radioactive treatment I had, I am not worried about that, but had it all cut off for ease of showering in hospital and it now looks like a dog's dinner. Strangely I couldn't care less as have decided it is more important to get on with life while you have it rather than how you appear to others!

      I expect when it cuts off my vision I will think again, but as my best friend, who also chopped my hair, has moved away I suspect it is laziness in ooking for someone else. It is a long way from here to Bournemouth so we content ourselves with phone calls.

      As for the voice , apparently all the iodine uptake is around my vocal cords and salivery glands, hence the dryness and voice. Sonya reckons another 3 months, so it is farewll to singing in my choir's carol concert ! I did go back to a couple of meetings, but when I tried to sing the pitch went down. I will go and listen to it and suck lemons in the front row to make them smile.. They will have to do without a top sop!

      Meanwhile I am sleeping and drinking loads of fluids ( with disatrous results ) and catching up on knitting and craft work. I am envying you the heat as it is cold, wet and windy here and I just cannot summon up the energy to put on my down jacket and go out. Besides it is nearly dark and Fred gets nervous if I am away for too long. That's my excuse and I'm sticking to it

      Love

      Jenny 

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    • Posted

      Ziggy, my Yorkie, and I are having a contest...we see your shaggy, and we raise you one...

      Google is like the Wizard of Oz...ask Google for the UK names...or eBay search

      Wonder how large that neon sign over the White, oops, Trump House is going to be....

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    • Posted

      What a disaster that was and we had another on a tram near me yesterday. Seven people killed and about another  fifty horribly injured as they went through the glass as the tram slithered on it's side. The driver thinks he had a black out.

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    • Posted

      oh, how awful...so many people ..

      black out as in alcohol?

      My prayers are for comfort for the loved ones so deep in grief...for the recovery of those injured...and for the driver who was at the wheel.

      We had a young teenager hit and kill a pedestrian last night...chilling

      hugs

      judith

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