LUPUS UK
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Erythromelalgia?

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.

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Yes...SNAP: my version is erythromelalgia simultaneous with raynauds, which is slightly more unusual. But the combo really does happen. My RP & EM flare in a daily cycle all year round. My feet & head are worst affected, but my hands are nearly as bad. I've had raynauds from early childhood, and erythromelalgia for at least 10 years. I'm 63 now, was born in the USA, but moved to the uk at 22 and have lived here ever since, so I'm sorry I can't help you with suggestions re USA clinics, but I've been a member of TEA for years and feel certain they'll be v helpful.

my version of lupus is infant onset, and my other primaries are vascular ehlers danlos hypermobility & primary immunodeficiency. I mainly lifestyle manage my RP&EM, but feeling is that my daily prescription combined therapy lupus meds are "somewhat" damping the EM down.

My EM was diagnosed by a rheumatologist whose expertise is immune dysfunction & connective tissue disorders, but I find that consultants in other disciplines sometimes are aware of RP&EM, e.g. A senior prof ortho surgeon I consulted about problems in my legs & feet is prepared to operate because he believes he can cope appropriately with my RP&EM issues whereas he believes other ortho surgeons are unlikely to be willing to cope (e.g. The chief of ortho surgery at the university hospital where I attend lupus & vasculitis clinic said he wouldn't operate on me due to my immune dysfunction & dysautonomia....but I have been operated successfully under general anaesthetic at another NHS hospital where the anaesthetists are used to giving me the special attention I need)

I gather you're being investigated for lupus. I just read your earlier discussion on this forum (sorry I missed it, but I've been distracted lately) & I see you've also posted on the HU TEA community forum here, but do you know the TEA Facebook group...it may have an even larger following, possibly?

facebook.com/erythromelalgia

I hope you'll let us know how you get on

🍀🍀🍀🍀 coco

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Thank you for sharing your insights and persona l struggle with this. Yes, I am being investigated for lupus, but it seems that at this point, I do not have it. The blood work all came back normal except for my total complement (CH50) being off the charts high again. My neurologist compared my condition to a connective tissue as well, but has not officially diagnosed it as such on paperwork.

My face is aslo affected - painful and so embarrassing. I look like a have a bad sunburn and it swells. My feet and legs are very painful though and my feet turn such a crazy red if I stand too long or after a shower. It sure would nice to be able to do some normal things without the pain and redness. However, when it's cold my feet get so painful and cold that no matter how many socks I wear, they won't warm up. Crazy stuff.

I will definitely check out that TEA group. Thank you for the tip. I hope that whatever you decide as far as the operation will be helpful and successful! I appreciate you taking your time to respond.

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Am glad if anything i offer up can be useful

Sounds like your medics are doing their best for you. This forum can be v helpful re feedback during the diagnostic process...regardless which country you live in, so I hope you'll let us know how things go

Another source of excellent erythromelalgia info inc diagnosis & treatment is here:

rarediseases.org/rare-disea...

Take care

🍀🍀🍀🍀

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Hi Goldyukr,

Barnclown has given you some really great sources of information there, I hope that you find them helpful. Another page which could be useful is nhs.uk/Conditions/erythrome... - It also links to another HealthUnlocked community where you may be able to chat to more people who also have this diagnosis.

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Hi I just have been told that I have this as well. I have raynaud,s just the opposite of this illness. I am also looking for answers. I hope to find some somewhere.. I will reply when I find some answers.

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Welcome, Dorothee. I have both as well. A few of us here have both. It definitely makes it more complicated. I have terrible pain in my lower legs every day from the Raynaud's, but alcohol, stress, heat... can activate the erythromelalgia. One thing I found very helpful is this doctor's account of dealing with this: medicationsense.com/article...

I also really like the Information available on the TEA website:

erythromelalgia.org/Support...

erythromelalgia.org/Portals...

I just saw a vascular specialist that was recommended on their website. She's trying to work with me to get some pain relief. I will be sure to post any success we find. Please keep us posted on your progress as well.

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Thank you so much for all the information. I have a quick look only because there is so much to take in I was only diagnosed by my own doctor yesterday and she told me no medication available. I am not bad at the moment in winter just no bath heated gloves for my hands and window open no heat possible. I will let you know how I get on.

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Hi goldyukr ive been diagnosed with this feet hands and face.Im just getting over a flare the pain burning was agonising I could hardly walk and also my hands I was so depressed felt alone and couldnt believe the pain.as im just diagnosed ive had this long time this being the worse flare.Im waiting to see a rheumotolist as this could be underlining illness like lupus as ive thought ive had this for years anyway Imy dr gave me naproxan just for now for inflamation till I get sorted properly.Ive never heard of this I do suffer with fibro menieres disease.and the list goes on.Sorry you suffer this too can you tell me what helps you best as im new to this .thanks x

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I’m sorry you’re having such a hard time! I hope you can find some relief. I was flaring terrible every day for a while and in the end realized it was being caused by a blood pressure medicine. I mean I still have it, but the daily flares were from that (amlodipine). Switched to lisinopril and now it’s not so often. I have to avoid heat, alcohol and stress. All of those cause a flare for me. Even cleaning house can bring it on. To tame it, I use a gel ice pack that I keep in the freezer and drink lots of water. The ice pack stays cold a long time and drapes over the neck. It really helps. Got mine on amazon. Hope you can find something.

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Wow goldyukr im on amlodipine.for high blood pressure flares is terrible thankyou very much going to look on amazon.xx

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Oh my. Call your doctor as soon as possible. We shouldn’t take any blood pressure meds in that class. ACE inhibitors like lisinopril are ok but not calcium channel blockers.

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When you were diagnosed goldyikr with eryermagia spelt wrong did they do a blood test to confirm it if so what did they tell you.ive been on almodipine years and im just starting to get bad flares which.is horrendous dr give me napraxon for inflamation and pain goldyikr can you shed more light on this condition and what meds they put you on plz and thankyou x

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Hi Goldyukr

I live in Michigan.

Yes I have both too and they are cyclic...whichever one triggers first the other one follows.

I was diagnosed by Dr Eva Feldman of the U of Michigan Neurology dept.

She sent my blood off for DNA testing took 10 months to get the results because she tested twice and conferred with colleagues before calling me with the results. I have Inherited EM one of 3 worldwide with my kind because salt also triggers too.

Might you be one of the other 2?

😊🌸

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Wow that’s unbelievable. 1 of 3. I have not been diagnosed with inherited but secondary. I have several other autoimmune diseases that trump it. I’m sorry you have to deal with that. I didn’t realize there was even DNA testing. Is that just for inherited, I wonder. Thank you for sharing.

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