Suspected Erythromelalgia - boiling red hands, began in early 2021. Urgent advice needed - feel very poorly

[Hanna_josef]

Hi

I’m a 25 yo female from London, UK.

I have hashimotos and hypothyroidism, both diagnosed and I am on treatment.

I began to experience sudden hot and achy hands in early 2021 - characteristics were similar to that of erythromelalgia but GP reluctant to diagnose despite seeing photos - tested uric acid levels which were high - both parents are diagnosed with gout so I am perhaps predisposed to gout but I do not have classic gout like symptoms as of yet. Rheumatoid factor appeared normal. GP prescribed allopurinol and colchicine but I did not take them and done an elimination diet in an attempt to pin point the triggers of my flares. The consistent triggers seemed to be high sodium intake, exercise, high protein intake, heat/humidity, stress and lying down.

I requested a referral to rheumatology, and if you’re not already aware the waiting lists on the NHS are very, very long. Was seen this year, 10th of August. Rheumy asked if I had photographs readily available which I did not, she suggested that I should perhaps see a dermatologist (?) based off my symptoms because she suspected underlying cause to be allergies. I pleaded with her to she carry out some tests to check inflammatory markers and other, which she agreed to do. She also booked me a hand ultrasound which I attended last week. Received a letter in the post regarding a telephone consultation she had set to discuss next course of action, the 20th of September but I am not hopeful she wants to help. When I met with her on the 10th of August 2022, I did not know what erythromelalgia was and as such did not bring it to her attention. I wish I knew about it then. I have since then taken photos of every single flare I’ve had since (daily!) and will present these to her, somehow…(next appointment is a telephone based one). I was hoping to seek some advice from this community in regards to how I should go about suggesting I may have erythromelalgia? And what to do in the event that most blood test results return normal and she decides to send me on my merry way? As I have read diagnosis is primarily made based on presenting symptoms and not any particular tests with this condition. The symptoms have been debilitating and disabling in many instances, and and have impacted on my ability to carry out essential day to day takes such as cooking, washing my hair and even using electrical devices such as my phone and laptop (which I require for work and study), not to mention the achiness and the heat is extremely uncomfortable to live with and have caused my mood to decline too.

In the cold, the tips of my fingers turn blue (could I have raynauds also? Would like to attach photo - but how?)

If I was to see a private physician, would it be a rheumatologist, vascular doctor or neurologist? Is there a doctor you would recommend who specialises in in autoimmune diseases/erythromelalgia and is based in the UK? Please, I’m really out of my depth and would appreciate any advice/knowledge/recommendations you may have and would like to equip myself with the best information ahead of my upcoming appointment with this rheumatologist so that I am prepared and not discharged without a diagnosis/further investigations and a management plan.

I have attached a photo to show you my hands from yesterday - I don’t think I can attach more photos in this post otherwise I would have. Can you kindly offer your comments on whether you think this is erythromelalgia. It often feels much worse than it looks. Accompanying symptoms are heat, extreme throbbing achiness and sometimes swelling. Feet are sometimes affected too and I have had this appear on the lower half of my face and neck (not the classic anxiety or stress induced rash).

[honeybug]

hi Hanna 🌿🌸🦋

I hope you’re still awake. I’m across the pond.

You have my sincerest empathy sweetie. I have both Raynauds. Phenomenon and Inherited Erythromelalgia. I was born with both but didn’t have big problems with them until my teens.

It took 64 years to get my IEM diagnosed via DNA by a Neurologist.

I started with my knees then feet then hands and now all over. The worst when it affects my head. I get billions of needles and skewer like pokes all over my head. They are hot burning pokes and I have difficulty breathing.

For my feet I used lidocaine ointment..,too greasy and trapped the heat in my case. Now I use Aspercreme with lidocaine wherever I need too but mostly on feet and it helps with my legs as well.

I flare from ALL heat exposure including weather bathing/showering cooking stress painsomnia and comorbidities.

I take Paxil nightly to control the head/breathing flares. So far works great.

It was suggested I take an allergy pill for flares but I do daily for allergies so it doesn’t work for me.

I use slow cookers Instant Pot and microwave to prevent heat exposure during cooking. My beloved hubby does dishes for me.

Feel free to ask me questions I’m willing to help however I can.

Soooooo sorry you suffer from this horrific condition. It is so difficult to explain so others understand. It’s like getting a physical burn which is beneath the skin while Raynauds causes the freezing of the skin simultaneously

Mine is cyclical. Whichever one starts the other one follows.

Nice to meet you my new friend

EvaJo aka EJ 🤗♥️🥰🙏🕊🌿🌸🦋🤝❤️‍🩹

[EOLHPC]

hugely feeling for you, Hanna. Glad you posted! I like your attitude to all this v much. I’ve been managing my version of EM since the early 1990s & wish I’d been as fast on the uptake as you are. V important that your taking photos, keeping a log re triggers, timing of flares etc! I joined HealthUnlocked in 2011…as the years passed & my version of EM became more thoroughly diagnosed & medicated, I have posted lots about this…

Eg maybe you’ve found this already, but here is a clear & concise 2022 official summary re eruthromelalgia science stands now…each page offers you tabs to click for more specific details

emedicine.medscape.com/arti...

And here is a 2022 link to the best & most recent published review I can find in the medical Lit on EM…seems to me the crucial thing is for your consultant to consider whether your EM is Primary, or Secondary to another condition. Eg my EM is secondary to infant onset systemic lupus which has been progressively debilitating my small nerves & capillaries as the decades passed, causing damage in my hands & feet which manifests most vividly as simultaneous severe Raynaud’s & Erythromelalgia (I am now diagnosed with severe Raynaud’s reperfusion injury, on high dose sildenafil scleroderma treatment protocol for this)

Hope something in these links helps…& hope you’ll keep us posted 🍀🤞💞 Coco

ncbi.nlm.nih.gov/books/NBK5...

[redmaggie]

I'm sorry to hear of your problem. Barnclown & honeybug has already given a lot of useful info.

Persistence and patience is needed to get a diagnosis that you feel fits your symptoms. I asked my GP to refer me to a rheumatologist at a specialist clinic at a London hospital. (A local rheumatologist was unwilling to help at all even though he agreed I had EM, along with arthralgia) Seeing the right dr/clinic is important as they will do a wide range of blood tests & are experienced with treatments. this year I got a diagnosis of undifferentiated connective tissue disease, and my EM and Reynaud's are part of that. My GP's could only say I had osteoarthritis.

The face book group erythromelalgia warriors can provide you with a list of doctors who are knowledgable about EM. They can also give advice on self management.

Good luck! I hope you get some answers before too long xx

[MDT1]

I am so relieved to find you all - I am completely thrown by having reynauds and EM - both diagnosed by my GP within months of each other and along with Polymyalgia rheumatica and Hashimotos - I sound a wreck but am really an active and positive 62 year old. My hands and feet are painful, 3 finger tips completely numb today - it is so frightening . . I have so many questions but for now am just grateful to find fellow sufferers. Sorry that you are all suffering but glad to not be alone - you know what I mean xx

[redmaggie]

Welcome to the odd bods club! EM and Reynauds are difficult conditons to balance. I am 65 and still fairly active nonetheless although I can't do what I used to (that same old song!) You must have a good GP to have diagnosed the EM, by the way.😀

[MDT1 in reply to redmaggie]

oh, thats summat I guess, well done GP - but he said.".. its nothing, just come back to me if you get blisters or blackened skin"

[redmaggie in reply to MDT1]

Hmm, he wouldn't says "it's nothing" if he had it himself! As for blackened skin the mind boggles. I would find another GP as he is clearly unhelpful and not that knowledgeable. As you probably know by now EM can be primary or secondary to a wide variety of conditions - so you need coprehensive blood tests and monitoring by a consultant who is experienced and interested in EM. there is some "homework" involved! My first rheumatology consultant at local hospital was useless - despite being head of department. I went elsewhere. My EM was found to be secondary to undifferentiated connective tissue disease, and it is still evolving. Like you, my activity levels are not too bad. Good luck xx