Does anyone else find they get raynaud type symptoms. I’m newly diagnosed and still trying to separate and work out what is a symptom and what is just my body.
I’ve been really struggling with circulation particularly in my right hand. Even though the weather has been mild and I might just be in a t-shirt I have to wear gloves or I can hardly move my hand. I’m 32, so this isn’t something my peers are experiencing or understand. Once the movement comes back then comes the pain. I always chocked this up to bad circulation, but I never used to get it outside the winter months. There is also a constant pain in my joints in the hand, but I understood that pain was mainly in larger areas?
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I experience this myself quite a lot particularly when I wake up in the morning. This tends to be described by a lot of MPN patients on this forum as a fairly common symptom.
I have had related symptoms. For several years, I have had "Reynaud's" in my fingers. Nifedipine helped greatly. In early 2021 was diagnosed with ET, JAK2+ and my MPN specialist said it may actually be erythromelalgia, which sometimes acts similarly. I am currently taking a low-dose aspirin twice per day and 45mcg of Pegasys weekly, no Nifedipine. My issues are much improved, but I do much better when I keep my fingers from being chilled.
The pain and sensitivity can be awful, so I wish you the best.
Hi, I have PV and recently diagnosed by a Rheumatologist with they think primary Raynauds in mainly hand but also milder in my feet.. It comes on with the cold, exercise, sometimes even if not doing much.Commences with hands becoming very cold and turn white, may tingle, become sore and then finger tips starting turning blue/black. Once they start warming up they throb, burn and tingle and start looking more of a red/pink colour.
My feet take longer to take effect. They become cold, go numb and start having cramp. I don't think these tingle, but do turn white. I don't experience joint pain in either hands or feet.
I have tingling, pins and needles the Rheumatologist isn't 100% sure it's primary Raynauds. They asked me to keep any eye out for swelling, lumps/scores or anything unusual. In the meantime try keep my hands and feet as warm as possible. I'm slowly obtaining a substantial collection of socks, gloves and warmers.
I'd advise speaking with your gp for a referral so diagnosis can be confirmed. It's usually Rheumatology who'll request a blood test and maybe some other test but nothing awful to be concerned about.
All the best of luck and try keeping them warm abd see if it helps. Even aircon can start mine off.
Me too! I’ve struggled since my teenage years and it’s got progressively worse I’m now 41, I was put on hydroxy to try and reduce the symptoms I was experiencing, as the usual drugs to treat raynauds wasn’t working. It’s made some improvement but I rely heavily on heated insoles and hand warmers and good quality gloves and winter boots!
For quite awhile I was getting coldness and numbness in my fingertips and they would turn white and then purple, sometimes blue or red (very colorful). It increased the more I used my hand. However, since I switched to Besremi about 4 months ago that symptom has slowly gone away. About a week ago I noticed that it was gone. I'm thrilled!
It’s hard to workout what’s caused by what . An ongoing process .I have cold hands and feet . Sometimes go slightly numb but not often.
I recommend soaking hands / feet in hot water with either about 4 drops of rosemary oil or some mustard powder . Keep a kettle near so you can top up hot water
I don't Raynaud's, but due to ET and the corresponding poor circulation, I do suffer from chilblains in the winter. (painful inflammation of small blood vessels in your skin that occur in response to repeated exposure to cold but not freezing air). This causes itching, redness and swelling on my fingers.
I understand that people also get these symptoms on their toes/feet. It took me years (literally) to figure out why my fingers were hurting and red - and surprisingly (at least to me), it took me a long time to even correlate that this was happening in the cold/winter months (I now keep a symptom diary to better see trends). Once I knew what it was and the cause (cold), I have been able to significantly reduce by wearing super warm mittens (including heated mittens), moving/wiggling my fingers when I am outside to keep the circulation going, reducing my time outside and never taking my gloves/mittens off when I am outside.
I find that prevention is really the only "cure" (i.e., none of the ointments, creams really did anything). And once I get a symptom, it takes a couple weeks for it to go away even if I am toasty warm.
I get the same symptoms. In my index fingers and big toes. It usually occurs when I’m exercising and the rest of my body is very warm. It’s only started to occur in the last 6 months and I was planning to talk to my Haemotologist at my next appointment. I never experienced these symptoms before my ET diagnosis and subsequent medication (daily aspirin and weekly 135mcg interferon). Very interesting to see others on this forum also experience the same. Thank you.
My husband has post PV MF he noticed since starting ruxolitanib he's always really cold. His hands from his knuckles to his finger ends go really white. He is ok when the outside temperature is 14oc but anything lower and he just can't seem to warm up .
I have ET Jak 2 diagnosed 1 year ago. I have had poor circulation ever since I can remember always in my hands during cold weather ( under 50 degrees). Since going on Hydroxyurea plus aspirin I continue to have the issue in my hands and my fingers sometimes turn black and blue. My feet now have turned numb especially my toes. My MPN specialist suggested Zyrtec or Allegra to alleviate the numbness. I have been on it for 2 weeks but have not noticed any improvement. It would be nice to know if it’s the disease or the meds. I also take 9 different prescription meds plus supplements.
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