Erythromelalgia

[jlo211]

Hi Everyone, I have been under the Rheumy for two years because of pain in my hands. Afer being diagnosed as sero negative inflammatory arthritis and spending a year on MTX, the rheumy ha now decided that she may have got the diagnosis wrong. My hands burn. The palms have started to go red. I showed her a picture of one of my 'flares' and she dismissed it as palmar erythema which is common in those with autoimmune diseases. If it's palmar erythema, why does it only occur during a flare? Why do my fingers go red? The ONLY thing that eases my symptoms is cold water, cold compress, cold weather etc. If I am cold - no flare and no pain. If I am warm or active, it flares. Typing for a living is not helping and I am in pain on a daily basis. No painkillers have helped. Negative for carpel tunnel as I had nerve tests on Tuesday. As this has been getting slowly worse for several years and I am no closer to a diagnosis, I have resorted to google and the result was erythromelalgia. Does anyone else suffer with this? Any ideas what else it could be? Rheumy is running more bloods including ANAs and a host of other things and also xrays of all my joints.

[KSee]

Hello jlo211

I can so relate with you but I've not heard of Erythromelagia until googled it...

I was diagnosed with Seronegative inflammatory arthritis since 2014 and on Hydroxychloroquine past 3 years. I had nerve tests which showed carpal tunnel syndrome too.

My hands are painful , get warm and hot but no obvious swelling and also trigger fingers. Had MRI hands last Aug which showed OA no inflammation.

Tried different meds for neuropathic pain and anti inflammatories, painkillers etc. No effect!

Saw Rheumy last week and had hand and feet X-rays and more blood tests.... apparently I have neutropenia ( low wbc ) ?? US scan of hands booked for June.

My Rheumy now considers I may have Sjogren's Syndrome too as I have very dry eyes , mouth and skin.

Autoimmune disease is so individual and the picture keeps changing. We just have to be proactive & keep asking questions of the professionals as well as get support from the wonderful people here.

All the best for as pain free a weekend as possible .

🌹🌹🌹🌹

[nomoreheels]

Well, I have to admit I didn't know about this & have had it from time to time, certainly not all the time so have thought it was just another thing RD gifts us. So, I had a google myself & Patient Professional Reference says Palmar erythema may be found in up to 60% of people with rheumatoid arthritis, this is the link to where this information is taken from ncbi.nlm.nih.gov/pubmed/180...

You've probably happened upon this when researching. From this I would take that it can happen as a secondary to RD, albeit often overlooked, so quite why your Rheumy is thinking your original diagnosis is incorrect I'm unsure. Do you remember from your original diagnosis if you're responding to treatment (inflammation levels reducing etc)? What reasons did she give for her thinking she may have got your diagnosis wrong? Do you have any other autoimmune diseases? It's often the case if we have one we are diagnosed with another, the initial one being the primary diagnosis, the second the secondary. If so had this been considered? Are any other joints affected? Think carefully about this, we can dismiss some aches & pains when one (or two) joint/s is/are particularly troublesome (your hands) when there are actually other joints affected but they're just not as bothersome. Sorry for all the questions but these are among the questions you could ask her at your next meet, as well as if she thinks you could indeed have palmar erythema & if so could it not be an indication you do have RD.

I hope you get the answers you need &, more importantly, an alternative diagnosis if she's sure you don't have RD, something is causing the pain & your other hand problems.

[jlo211 in reply to nomoreheels]

Thanks for responding. I have Hashimotos thyroiditis which is my primary autoimmune disorder. Despite a year on MTX my ESR and CRP remain exactly the same as they were. Rheumy also put me on 500mg Naproxen twice daily for the pain and it doesn't do anything. And I do mean that. It just gives me insomnia. As none of my symptoms improved on mtx and my inflammatory markers have not changed at all in 2 years, (and following US of hands, nerve tests and xrays) she basically has drawn a line under the whole Rhematoid arthritis diagnosis and is starting back at the beginning taking a full history and going over symptoms. The palmar erythema is just a skin reaction - it doesn't cause burning pain so this is why I disagree that she is right. Now I have another 6 months to wait for my next appointment and I am in agony day in and day out. No pain meds help. The ONLY thing that works is the cold.

In the most recent letter to my GP she writes 'The ultrasound scan of her hands shows small effusions but no significant synovitis. This is a rather borderline result and does not confirm that she has an inflammatory arthritis, although the clinical picture is suggestive of a low grade inflammatory arthritis which is most likely autoimmune and related to her endocrine autoimmune disorder. ....She has persistently raised inflammatory markers....To consider connective tissue disease or FMF.

What on earth is FMF. If its familial Mediterranean Fever then my symptoms don't match that at all!!

I'm so fed up. If I do have a low grade arthritis then that is not causing the pain as the mtx did not help at all. The pain is the entire hand and I'm only in pain when my hands are red.

I have some hip pain but I am clinically obese so that doesn't help. The hip pain is completely different to the pain in my hands.

[nomoreheels in reply to jlo211]

Given your responses (or not) I can see why your Rheumy's backtracking though her prognosis of FMF seems a bit random (yes, you're correct, it is Familial Mediterranean Fever). Given you have Hashimoto's it would follow you could gave another autoimmune disease, it's just figuring out what & why it dies my respond to a DMARD or NSAID. What do think about it possibly being OA? Hanging on to the US revealing small effusions. Seems a basic overlooking (?) if it is. I guess all you can do is see what comes of starting over, but I do hope it's more clear cut & whatever it turns out to be is readily medicated to give you relayed from it. Good luck & keep posting, you never know something may ring a bell with someone.