Scleroderma & Raynaud's UK (SRUK)
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R.a and raynauds

R.a and raynauds

I am only twenty-four but eleven years ago I was diagnosed with JIA and Fibromyalgia, which later progressed to adult Rheumatoid Arthritis. I was a sickly child with constant health problems which went on through my teens and has continued in to adulthood. These problems include neutropenia and thrombocytopenia - which affect my blood.

Since 2008 I have been getting attacks of what I now know is Raynaud's. It frightened the life out of me when it first happened because it affected my whole body. It began, as it always does, with tingling sensations in a particular place (usually feet or thighs), which get progressively more severe as it moves around the body. The sensation is akin to - in my opinion - being bitten simultaneously by thousands of red ants repeatedly. It feels as if I have insects burrowing in to my skin and there have been times where it has felt like the sensation is under the skin, affecting my internal organs.

It is very painful, and I get scared each time it happens. Usually, it happens in the cold, or when I'm walking somewhere. I wouldn't dream of going on a treadmill because I know it would flare up then, too.

I cannot explain how traumatic the experience is when it flares up. If I am in public, then I will have to go to the toilet to run my hands and feet under cold water. I've even had to jump in a stream to find relief. Last week I went and sat in the sea in Greece until it cooled down. I find that I cannot have anything touching me because my body is just too hot. I am used to highly intense pain but I would rather than an R.A flare up than a Raynaud's flare up! It's terrifying beyond all doubt.

To control it, I take antihistamines, which help. I take these before I go on long walks. Interestingly, in Italy recently, I walked all day and it didn't flare up - the entire week I was there, I had no problems. However, two days after being back in the UK, I had a huge flare up and had to have a cold shower at a friends house.

However, I'm writing this because my description doesn't seem to fit everybody else's description of the disease. My fingers don't go blue or white, they go blotchy, but no more than the rest of my body - and my pain sounds a lot more intense than just 'discomfort'. My GP saw me mid flare up once and told my heart rate was elevated, which is consistent with being in agony.

Does anybody else have any symptoms similar to mine? I would appreciate comments and advice about how to deal with it. I can't have it get in the way of my life any longer, but equally, I also need to make sure it's actually consistent with the symptoms that other people are having.

7 Replies

Sounds to me as though you have Erythromelalgia rather than Raynaud's Phenomenon. Google it and see what you think about that. I don't think it is Raynaud's. Have a read of Erythromelalgia symptoms and let us know what you think.


I would agree with judyt that your symptoms seem more like those of erythromelalgia. What does your rheumatologist say? You do need some relief from this but a correct diagnosis would help.

All the best



Hi - I have RA too and get a mix of icy cold sensations everywhere and burning heat of the kind you describe. I also have secondary Sjogrens and am Hypothyroid - autoimmune central basically! But I'm a lot older than you at 51 and was also a sickly child with severe eczema and bouts of alopecia.

I did seek a second opinion recently from a rheumatology professor who specialises in connective tissue diseases and he confirmed the diagnosises to date - including Raynaud's.

My soles burn often and I get these heat surges throughout my body and have burning ants sensation in my legs so that it really hurts badly. I too prefer an RA flare anyday but unfortunately mine go together so when RA is flaring I generally go icy cold and can't warm up at the same time as bits crawl and burn.

Unlike you I can't bear anything cold near me anymore and use hot baths and showers to warm up. Just like you though my extremities don't go blue although my toes were going white before I took the drug Nifedipine - which dilates my blood vessels and makes my extremities and other parts flush bright burning red after stress or exertion. I think the other two are probably right about the Erythromyalgia - I seem to have a mix of both. I think this is quite common when you have Raynauds as a secondary condition.

My own rheumy consultant hedged and just said keep under observation - but I got to the end of my tether after 8 months off MTX with the burning nerve pain being ever present - waking me up in the night crying out. So I do sympathise and agree that you need the right diagnosis and treatment and your rheumatologist should be the person to do this - but unfortunately mine wasn't - hence second opinion and being lucky to have a great GP. Good luck. Twitchy x


I have raynaunds and Rheumatiod Arthritis and scleroderma .I am complex like your self .Though don,t get your symtoms .Some one at the royal free London might know what you are talking about


Hi Kirstielogan - it sounds to me as if you are suffering from erythromelalgia not Raynauds, although I'm no expert on the former I'm a bit of an expert on the latter as I've suffered from Raynauds for approx 45 years, first as primary Raynauds and latterly as secondary to my connective tissue disease. Hope you get a correct diagnosis and treatment soon.

Best wishes, Barbj


I agree with you also I have raynauds em and menopause it is sometimes a living hell but I now always have fan of some sort chew gum for moisture and drink water they help me also being under royal free hospital I get illoprost infusions twice a year now it helps to meet other people on same dilemma as we can support eachother . See your doctor ask about em it affects my whole body sometimes raynauds attacks when finger tips go purple or em when hands and feet burn and swell sometimes you can be hot and cold at same time since being put on gabepentine my weight has gone up by stone and half gets you down but we all have to be positive and help eachother x.


Thank you all so much for the advice and support. I really thought I was on my own. I've returned from my holiday with blotchy legs and they're all swollen! People think I look odd - I have googled that, and I think you're all right. I don't think it is Raynauds. I shall keep you all posted what what my consultant says next week. She's very good so hopefully will be able to get to the bottom of it. I hope all of your conditions ease a little for the summer. Regards x


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