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Scleroderma & Raynaud's UK (SRUK)
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Anyone have these Raynaud’s symptoms?

hello all! I was officially diagnosed with raynaud's this year, even though I suspected I had it for many years. My toes turn a nice shade of reddish purple when sitting at my desk and not moving for about 20 minutes or when being exposed to cold. When standing, moving, warm, or elevated they look normal. After exercising, the toes turn bright red and feel hot for about 15 minutes. Anyone have these symptoms? I thought it was only triggered by cold, but I've been told that the pressure change of sitting will trigger it too.

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Hi Vc06

Sorry you’ve got Raynauds. You didn’t mention if it’s primary or secondary. Primary means it’s not connected to another disease like secondary is.

There are many triggers for it. Getting chilled cold. Illness stressed the weather are all triggers. In my case I have secondary and it has progressively worsened with age. It can be affected by other conditions like poor circulation and salt intake as they both constrict blood flow.

In my case I have the rarest form of inherited Erythromelalgia which is the other half of the cyclic vicious episodes to my Raynauds Phenomenon. Whichever one flares first the other follows. They are extremely painful these days.

Once your toes go cold and blue/purple they will pink up after the blood flow resumes. This was always burning and painful for me.

Caution must be used to protect your toes and feet from tissue damage when the episodes are lengthy like in Winter cold exposure. In worst cases permanent sensation loss and frostbite/gangrene can develop. Have to keep your feet dry and warm as possible.

You can visit a world renowned clinic site here in the USA 🇺🇸 for details. Sorry I can’t do links.

mayoclinic.org

Best wishes for good health and take care.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

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Hi get all sorts and getting worse these days plus also have Diabetes sniffing around like a Dog on a drug hunt! so something i have to be aware of as both add to it.

Get dam painful all the time also.

Had something like frost bite in one big toe year or so ago from getting cold at home which Quack at A&E said gout with no tests etc yet foot clinic and others even chemist said not

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Wow!!! I agree that guy at A & E was a quack. The NERVE saying that it’s gout.

Sorry you experienced that. Hope that never happens again.

Take care. I hope that your Raynauds stays stable.

Best wishes.

EJ xx

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Hi Vc06, Raynaud's is scary. Protect yourself with Niacin, the kind that give you a flush. I take 500 mgs of Niacin twice daily and use pocket hardwarmers from LL Bean. The Raynaud's association recommends Gingko Biloba twice daily. Keep warm and use lightweight gloves and socks. Con air has electric spa treatment mitts for your hands. You can buy them through Sally Beauty Supply. Try to stay away from Nifedipine. Too many painful side effects. God bless you and give you strength.

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ITS THE COLD WEATHER ALSO TRY PEREFFIN WAX FOR COLD HANDS AND FEET. WARM SOCK AND MOVE TO A WARMER CLIMATE. ASK ABOUT PAIN MEDS, AND PAIN SPECIALIST, PT ALSO CAN HELP YOU LIVE A NORMAL LIFE. I TAKE AMLODIPINE ASK YOUR DOCTOR ABOUT MEDS TO TREAT THIS. TRY MEDITATING OR MINDEFULNESS, ART THERAPY, SWIMMING, YOGA, ANIMAL THERAPY THE IDEA TO TURN DOW THE PAIN DIAL. I HAVE ERTHYROMYLALGIA ITS WORSE THAN RAYNAUD'S I TAKE HYDROCODONE 325MG. ALSO BIOFREEZE IS GREAT FOR PAIN EXTREME RELIEF GEL CANNABIS ON THE WEB TRY IT. HUGS FOR A BETTER DAY.

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Sanmateogirl107

You have made some great suggestions.

Friendly hint...replying in all caps is considered shouting and refrained upon in the cyber world.

Take care

EJ xxx

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Does anyone get Raynaud’s symptoms from sitting? I saw a few older posts where people complained about purple feet/toes from sitting in a chair, but of course those people are no longer active :( I wanted to ask them what helps.

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And my gp thinks it’s primary Raynaud’s

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mine kept saying same but thick as? If have fibro it is often a secondary thing

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I am very interested in your photo of your toes. My toes have been similar to yours for the past four years or so, but the color is bright red turning to purple/black. I have always suffered from cold feet and they seem to be getting worse, beginning to be painful to touch.

I have seen a Rheumatologist and she said it was a circulation problem and not Raynauds or Scleroderma. She did a lot of tests including ANA.

I try to keep my feet warm. It is a continuing struggle. April starts tomorrow and I am still wearing knee length woolen socks, but my feet are still cold.

Have you any solutions?

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My feet are always cold as well. At the moment I am wearing cut off 100 denier tights , knee length Bamboo socks, 2.4 tog socks which I found in Tofs. and sheep fleece bootee slippers. My feet are reasonably warm! Not sure how the slippers are made, they are not sheepskin, more like a double layer of fleece from a live sheared sheep. From the colour I think they may be Herdwick, a very hardy breed which lives on the fells all year round. Afraid I can't suggest where you could get them unless you live within reach of Keswick market, but there is probably something similar in other parts of the country.

When things get worse I have a foot warmer which I find great to put my feet in when I'm sitting. It is electric but once it's warmed on it's lowest setting I turn it off and wrap a blanket round my legs and feet and everything stays warm. In fact I think my whole body feels warmer.

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Many thanks Bearman for your reply. Interesting to hear about all the socks that you wear. May I ask do you have problem when you go outside and how do your outdoor shoes fit when you have all those sock on?

As for the foot warmer - I have one of these, but I am afraid of getting chilblains if I use it also afraid of tripping when I get up as I am at the age when I cannot afford to break any bones.

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I can't wear the very thick socks when I go out, but have some SRUK self heating insoles. I warm everything, shoes, gloves, coat before I go out and put slippers etc on the radiator to put on again as soon as I come in. I always wear a hat. It is important to keep your whole body warm, the whole length of your arms and legs. You can't dress like a teenager any more, and no-one knows what you have on underneath.

I take my feet out of my foot warmer before I stand up so won't fall out of it. It only needs to go on the lowest setting and as soon as it's warmed I switch it off, so less likely to get chilblains. My feet stay warm with a blanket round my legs.

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When elevated or moving, the toes turn normal color again. Also, just keeping them warm seems to help, which is almost impossible if I'm sitting in a chair with my feet on the floor. My doctor checked the pulse to my foot and said it was strong, that is why they diagnosed as Raynaud's rather than a circulation problem. I haven't gone to a Rheumatologist yet, but will soon. I'm only 30, normal weight, normal to lowish blood pressure, no diabetes. Normal ECG, BNP, no arrhythmia detected. I have health anxiety, I visit the doctor often and my labs come back normal. Were you diagnosed with a particular circulation problem?

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Yes I too have feet like yours except only on my right foot

Cold ,heat sitting too long makes them turn redish purple also I wear wool socks and wool boots I also use organic castor oil all the time I make salve for my hands and feet because if they dry and crack there prone to infection

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Do you just have Raynaud’s? Or an underlying autoimmune issue?

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Hi I have been trying to find out why my toes go like that for three years I paid to see a rheumatologist as my doctors kept fibbing me off she did test said it was Raynauds but did blood test and found I had a positive PMScl-75 autoantibodies so she has done more test for muscle enzymes so waiting on that

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Do you have any other symptoms? Or is it just your toes? I’m so worried.

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Have you seen the rheumatologist as my doctors were useless I have awful heartburn short of breath and a cough I have had for two years now

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What does she suspect you have?

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I am scheduling an appointment to see the rheumatologist. I don’t have any other symptoms besides the red toes. I sometimes get heartburn. They did chest X-rays and an ecg, which were normal. Praying it’s just primary.

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Any encouraging words? I’m having a hard time dealing with this.

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I've had it for decades, mostly in my hands but starting on my feet also. Also have scleroderma. What I find best is keeping my core warm with hot drinks, warm tops and a heated vest. When you are moving blood flow and core temp increases so inactivity permits your core to feel the temp change. A heater under my desk was necessary as I worked in a cold warehouse.

Also available are heated boots, socks, insoles and gloves. Power in Motion have the thinnest gloves I found few years ago, which allow working while wearing. When my rhumy saw them he thought they should be tax deductible as a medical expense, but that's Canada.

Good luck. It is annoying but mostly preventable with extreme attention and preparation.

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