Erythromelalgia?: Does anyone here also... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Does anyone here also suffer from this? My family doctor believes I have this as well now. I went on that forum and posted a question, but no response. I don't think it's very common. It's basically the opposite of Raynaud's. I seem to have both. My question is - what type of specialist would you recommend for this? Podiatrist, neurologist or vascular? I was given a nice list of specialists in Florida where I live by The Erythromelalgia Association (TEA). I'm leaning towards the vascular specialist at Cleveland Clinic. Any comments? Thank you. Oh, I get the symptoms daily - face and feet primarily.

11 Replies

Would it not still be a rheumatologist that deals with this? Although I have to say I've no real experience of it, if it's the opposite of Raynauds doesn't it still mean it's the same systems affected?

Your doc should've pointed you towards the correct specialist I'd have thought. I'm in the UK though, so with the NHS I have different expectations than our American cousins with their health systems.

Good luck, I hope someone can help more than me (that's not a very high bar lol).

Goldyukr in reply to gindy

Thank you. I have a rheumatology appointment in a month. My family doctor just found the information after much searching. I am so, so thankful to her for not giving up on me. She sent me the website and I immediately knew it was right. She felt the same way. So now I am waiting for her advice on how to proceed. But I've found that those who suffer with the condition have a better insight usually since they've been through it. Thank you for your advice. I appreciate it.

gindy in reply to Goldyukr

At least you've got a determined doctor on your side. I was also lucky in that my SSc was diagnosed quite quickly as my GP was very familiar with Raynauds (which I've suffered from for most of my life) therefore also in the know about SSc.

It makes a massive difference having a good doctor.

Best of luck friend.

Hi. @gindy, I actually do have both , and. I see a rheumatologist. I began with raynauds in my mid thirties and about 5 years later also suffered with erythromelalgia. The rheumatology treated them both with the same medication which basically opened the blood vessels.

It is hard trying to get the balance right because you don't want grant differences in temperatures, too cold & triggers one off & too hot triggers the other off. My erythromelalgia seems to mostly to have settled now but when it sets off it affects my hands & feet which swell & burn red hot so just have to cool them slowly sometimes in Luke warm water , never cold because that triggers my Raynauds off.

Hidden in reply to Jensue

Hi - I have small fibre neuropathy and something equally rare called ganglionopathy. Basically these two seem to cause pretty much the same symptoms as the EM and Raynauds combination, apart from the colour changes. I even get very dry, itchy fingertips and shiny skin on my hands and feet because of the neuropathy -another similarity with Scleroderma I believe. But it's all in my tiny nerve fibres and dorsal roots of ganglion nerves I'm told.

I find that hot baths or even showers will trigger pain to flare up massively. Cold water is distressing to me as well and my toes turn bright white and then deep red with the cold. This type of neuropathy is also sometimes part of a connective tissue disease and in my case the disease is called Sjogren's Syndrome -although in my blood work shows up for Scleroderma rather than Sjogrens. I tell you all this just in case this helps you in your journey.

Erythromelalgia is pretty rare but is most commonly paired with Raynauds and, like Raynauds it can affect people on its own as a primary condition or it can be part of diseases Scleroderma, Sjogrens Syndrome, Rheumatoid Arthritis or Lupus. I did find a closed Facebook community for EM sufferers when I was looking a few years ago.

But now I've been rediagnosed and believe my neuropathy diagnosis is probably the right one, along with mild secondary Raynauds.

It's very difficult to manage the temperature changes because when I'm chilled I long for hot baths to warm me up. In the mornings this isn't too bad but at night it is always disastrous!

I believe Aspirin sometimes helps for those with EM.

Goldyukr in reply to Hidden

You have had quite a journey. It took me almost four years before I began to get any type of diagnosis. They then found that I also have small fiber neuropathy and that all along I had had a stroke (at 41). My rheumatologist at the time added on raynaud's. Then at a future visit she added fibromyalgia and chronic fatigue - but now these are doubtful. Then this summer I found a new specialist that took it further. He says that more specifically the neuropathy is autonomic and that I also have mild myopathy with secondary neuromuscular junction dysfunction. He says it's a problem between the muscle and nerves. He likened ito to connective tissue, but didn't specifically define it as such. He also feels I had vasculitis which caused the stroke. Now as of late, these new Erythromelalgia symptoms have appeared. I see him in a couple of weeks and hope that he can give me some direction.

It's so helpful to hear how others have been able to balance these two conditions somewhat successfully. Thank you.

I too have both but see a very good vascular consultant! Have tried lots of treatments for it but now going to have iloprost Infustion in 2 weeks to hopefully help as really gets me down the burning sensation x

Goldyukr in reply to don5766

I've read about that treatment. I really hope it helps you. I'll be curious to hear. Please post something about it if you feel up to it after the treatment. Thank you

Oh and I think it makes sense to see a vascular specialist. I'm going to talk to my doctor about this.

I will post once I have the infusion! Thanks x

Hi... it should be a neurologist that you see as it is a nerve and neurological condition. Nothing to do with rhumy. I hope you find some answers. I have had this condition for a while now and the only medication I have found that helps is Amitryptoline.

Nicola x

Dermatologist is who diagnosed my EM. But the only treatment that did anything for it was given to my by a Pain Consultant. He put me on 75mg Venlafaxine starting off on 1 a day and adding a further 75mg each week until I reached a maximum of 75mg Venlafaxine 4 times a day.

It took 2 weeks before I noticed any changes. It was amazing how well they helped and eased my EM by about 70%. I still have flare ups each day/evening but they don't ladt longer than an hour, are less painful and completely stopped my eye flares.

Sadly though my body has gotten used to these meds as I've been taking them for 4 years now and they don't work nearly as well as they did. Saying that, they do still help.

BTW... Never ever cool down am EM flare with water! I was doing this and my skin started to break down (trench rot) I also was putting my feet and hands in the freezer or causing a Reynolds attack - well numb equals no pain! This was also causing my skin to break down and I was told by specialists it was likely to give me gangrene

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