Anyone else have Raynauds in their 30's

Anyone else have Raynauds in their 30's

I keep being told that Raynauds is very common but in older people. (Sorry not calling u all old!!). But I'm 33 and have got hit with severe Raynauds 9 months ago and no treatment is working. I have got Iloprost drip for 5 days which worked for 6 weeks, then Adalat 5, then Adalat 20 and now my Rheumatologist says he is running out of things to try. But now my blood pressure is very high and nobody knows what to do.

At the minute I'm on blood pressure tablets but no treatment for Raynauds. I'm only on then 3 days and I'm getting severe Raynauds attacks even though it's warm outside.

Is there anything else to try - even natural remedies I'll try anything to ease the attacks

11 Replies

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  • I have severe Raynauds, which started nearly 6 years ago. I'm 39 now.

    Have they done any blood tests to see if there's an underlying problem causing your Raynauds?

  • It's not just a geriatric thing! Our daughter has it- she's early 20's.

    I'm sure you know it can be primary or secondary.

    It often accompanies an underlying auto immune disease- usually one that falls within the connective tissue disease umbrella. ( then the Raynaulds would be considered " secondary " to the underlying connective tissue disease.)

    I have APS/ Hughes syndrome. It's an auto immune disease that causes the blood to stay in a hyper coaguabke state and is very prone to forming blood clots.

    I also have quite severe raynaulds . Started in 20's. Alone, it's quite benign- unless you really start developing necrosis of the tissues. Keep them warm in the grocery store! My friends bought me special long gloves on line that allow finger tips to peep out for texting- then cover back up. Great for air conditioned restaurants, cooled sections of grocery stores, lying in bed reading...

  • Thanks for your reply - I have been told I have severe Raynauds however my doctors tell me I have an auto immune disorder but haven't been able to say which one! They have taken several blood samples and sent them off to immunology for testing but keep coming back clear. Would love to know what else is causing this as the Raynauds is getting worse and no treatment is working so far.

  • I've had it since I was about 5. It's got a lot worse over the last year. I have been diagnosed as having systemic sclerosis and overlap syndrome which explains why. Does make you feel like an OAP at times !

  • Hi, I got Raynaud's in my mid 30ties and the only thing that helped was moving to Spain at 49. Not a useful recommendation, but it pinpoints the ultimate solution: constant warmth. I still get navy blue hands in winter (occasionally), but not the painful attacks and no ulcers since 2004. In England I lived with my gloves on.

    Best wishes.

  • Hi Sootie1

    Is your raynauds primary or secondary?

    Regards

  • Secondary

  • Hi I have been prescribed Losartan - which didn't really work and am now on Sildenifil which seems to help me. Unfortunately Sildenifil shouldn't be used for younger women, so I'm not sure how helpful this is. Might be worth asking about Losartan though.

  • I've had it since a young girl, too, as long as I can remember. I'm 30 now.

    Have in the last year been diagnosed with erythromelalgia (started having flares around August last year), and have my first rhuemy appt in July to hopefully be able to work out the rest of the probs I've got going on (lupus like symptoms, but no rash, ANA 1:2560)

  • I have erthromelagia that started last year too. It's awful can't be cold and now can't be hot Hope you get some answers

  • I know, I hate it. Oddly I've found winter can be the worst at times, as we can get cold (!!!) here and we don't have central heating, but can't keep my feet or hands under a blanket, can't have the electric blanket on without layers of blankets (like a folded quilt) between my feet and it, my hands out and resting on top of me or on the pillow. Can't properly cuddle my hubby for any length of time (can't put my hand on his chest, leg over his as it pulls the blanket off of him), can't even bloody hold his hand for more than a moment or two.

    No socks, no shoes, even when it's literally freezing outside, more than a short length of time starts a flare.

    The cold hurts, the Reynaud's sometimes seriously uncomfortable. And the chilblains because of the cold burn, itch, too. But the EM flares are agony.

    So yes, fully understand the no win.

    But me, too. Even just for some answers would be great

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