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
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mc_clean_david
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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.
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 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
I’ve had Raynauds Phenomenon since birth but diagnosed age 12.
It’s secondary to autoimmune disease. I also have inherited Erythromelalgia one of only 3 globally finally diagnosed via DNA in 2014.
The RP was the worst until age 19 when the IEM joined the progression. For RP I wore long sleeves/jeans year round in the Summer heat starting age 11.
Winter required layers of knee socks and bedclothes as my bed was against the North wall in our fierce Michigan USA 🇺🇸 winters which started in October until May.
Once married at 18 when I moved into our first home the IEM became a menace that Winter required me to go outside in subzero temps without the protective outer wear to cool down. Did that several times. Knew it wasn’t normal but pushed through it as I was conditioned to do from my first 18 years of torture and trauma via childhood abuse.
Over the years I learned my RP was my dad’s genes as he has it too and the IEM was mother’s as she had the same symptoms never diagnosed.
I’ve played the layers game all of my adult life. Take/wear layers to adjust as needed.
Add/remove layers as needed in bedtime.
Started wearing the lightweight gloves even to sleep in... on off as needed.
Feet always wore footies to bed as needed.
Used warm water as needed to pink up my hands/feet as needed.
When lightweight gloves bothersome used powdered medical gloves. Keeps the warmth giving dexterity. Sometimes used the medical gloves/lightweight gloves combo.
Used thermal underwear layered under clothing in Winter inside to keep the warmth trapped against my body.
Reducing salt/sodium intake helps as this constricts blood vessels...in Raynauds patients the disease itself does this. Salt makes this worse.
Space heaters that are made to safely use without causing fire hazards can keep your room comfortably warm.
Avoid drafts obvious exposures that will trigger chills and exacerbate the flares.
Once my IEM flares were equal to my RP flares they became debilitating. I don’t take any meds for my RP. I do use Paxil for my IEM to keep the worst flares that superheat and cause billions of searing pain needles poker stabbing pains all over my head and impairs my breathing. I also get a calming effect from it because Paxil is used for psych treatments too.
I think you would benefit from DNA testing for autoimmune diseases to diagnose any contributing comorbidity.
I truly empathize with you. I now have multiple neuropathies and often don’t feel my hands/feet need attention. It’s only noticed when I happen to touch my face.
Oh I forgot to mention that my RP has migrated to include ears nose and now wherever it wants to go without warning.
I hope you never have my progression.
Feel free to chat with me anytime if you think I can help.
I just said a special prayer for you and wish you the best at getting it sorted.
Abundant blessings.
EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊
I remember my dad rubbing my feet and hands as a kid. We didn’t know it was raynaud’s. We just thought I didn’t tolerate cold as well as other people. It has got worse with age and stress can trigger it in warm weather. A cold or ice drink triggers mine real bad.
Hi, my name is Micah, I’m 23 and also have Raynaud’s. If you can’t tell by my username I’m originally from Wisconsin. Lived there all my life until I moved out to Florida for a year of college and from there Pennsylvania for the last two and a half years. I’ve only noticed everything recently after I moved to PA and just within the last year my Raynaud’s has advanced drastically. When my physical therapist told me to remove my shoes and socks during my initial eval earlier this year and saw my toes and feet were blue within 2 minutes, he informed me that I have Raynaud’s. I work as a mattress salesman and store manager so when it’s slow (which is 90% of the 11 hour work day) my fingers will turn blue if I’m not getting my blood pumping and moving, and that’s even in a 72° building. I usually try to drink a gallon of water throughout the day and even sipping my water often starts an flare up. I’ve also noticed the last couple nights when I lock the doors and go to my car after work, my Raynaud’s kicks up from touching the cold metal doors.
Not sure where anyone reading this might be from but one thing I’ve noticed living on the east coast is how much moisture there is in the air and how it also affects my Raynaud’s. It can make it hard to hunt or do yard work or anything outdoors, all of which I love doing.
I haven’t sought out treatments because I haven’t really found any, at least in my research, that can treat Raynaud’s directly, just manage symptoms. I was supposed to get a blood panel done but my doctor refused. My wife who’s in nursing has told me that calcium channel blockers which are primarily prescribed for angina *may* also help lower the effects of Raynaud’s. Now I’m not a doctor and I’m not giving medical advice here (I believe you need a doctor's prescription for calcium channel blockers so ask your doctor if you’re curious) but has anyone else tried calcium channel blockers or anything similar to help out? And has anyone found any rheumatologists to be helpful?
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