After four years of getting nowhere with my Rheumatologist, I took the bull by the horns and did some research of my own about my burning red palms. I found Erythromelalgia. After showing my rheumatologist everything I had, and being dismissed, it was time to take action myself. I found Dr. Roman Cregg, a specialist pain management consultant who also has a keen interest in Erythromelalgia. I emailed him, enclosing photographs, and he called me to say he would be very interested to see me. Then another blow - my GP refused to refer me. I needed to see this specialist. I self referred, privately, at a great financial cost, and I met with Dr Roman Cregg last week. Although I do not have a confirmed diagnosis, he was very thorough, took full history, read all of the copy rheumy letters and asked to keep them and advised that from what he has seen (I was in a mild flare at the time and skin temp was elevated compared to rest of arm), he thinks it is Erythromelalgia. My pain started 3/4 years ago and is getting progressively worse as the months go by. As I cannot afford private healthcare, he has said that he will write to my GP and hopes to meet me again at the National Hospital for Neurology and Neurosurgery in London. He has started me on aspirin 300mg once daily for 5 days and I am then to drop him an email to let him know how that's working out (not too great so far!) and then he will consider gabapentin.
I am relieved to finally (i think) have some sort of diagnosis but apprehensive that he explained treatment will likely involve infusions and injections. I am worried that I will have to stop working and this is a blow to my life that I am struggling with right now. Dr Cregg told me that there is no support in the UK (only TEA in the US) but that I needed to tell my story so that others may benefit. I would be very interested to meet/communicate with anyone else in a similar situation to me. I need all the help I can get - including advise on where I can buy some gel cooling gloves or pads from because I am really struggling this summer!!
Thanks in advance
PS Hashimotos since 2014, Sjogrens since June 2017
Written by
jlo211
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Great post! Every detail will help anyone reading it.
Sadly, there isn't a lot of activity on this forum. And, as far as i can tell, the Erythromelalgia Assoc doesn't see to be monitoring actively here either. There is usually more happening on their facebook page, where you're possibly most likely to get advice about lifestyle management, self help products etc:
I'm 63 and have been managing simultaneous raynauds & erythromelgia for many years now - the erythromelalgia is most apparent in my feet, hands, ears, face. My primaries are Infant Onset Systemic Lupus & Hypermobile Ehlers-Danlos Syndrome, with early onset Sjogrens & Primary Immunodeficiency (hypogammaglobulinaemia G,A,M), and small cell vasculitis...along with several other comorbidities.
I agree: there is virtually no EM support here in the UK. I attend rheumatology & immunology + several other mustisystem clinics at a major international univ hospital here in the uk....where even the chief of my lupus clinic says relatively little is really understood about EM. I joined the TEA back around 2011 when my EM (erythromelalgia) was finally diagnosed here in East Anglia. Back then, i found the TEA website archives & newsletter very helpful. Since then i've found wiki has been improving its info in EM. Otherwise, this is my fav source of info, especially re treatments, maybe you know it already:
I do know several others with EM on my HU Lupus UK and Sclerodrema & Raynauds UK forums. think my combined therapy lupus meds go some way to slightly damping down my EM, but i am constantly lifestyle managing it. Eg i stick to vvvv light breathable footwear and I find heavy duty moisturising helps quite a lot....i use pure shea butter several times a day.
My raynauds has gotten so bad that rheumatology wanted me to try IV iloprost. But in 2011 they had me try the vasodilator nifedipine to which i had a v bad reaction...including my EM flaring severely. So, instead i'm trying losartan orally starting in october. Apparently systemic sclerosus patients with severe raynauds especially benefit from losartan. Am not looking forward to this trial, but needs must...i dread losartan making my EM worse than it already is
I hope you'll keep us posted on your full diagnosis & treatment
Thanks Barnclown, sounds like you have a lot going on, I don't envy you! I'm awaiting Dr Creggs letter with much eagerness so that hopefully I can push my GP for the NHS referral. I will certainly write again when I have more info. My feet have been agony these last few days - it's been very hot here. I have been fighting for years with all my illnesses and to be told that EM has also been known as the suicide disease hasn't helped my mental health!! I will keep pushing for relief, however that comes. It's good to know there's a few of us in the UK. Maybe we should start a UK branch of TEA? Lol.
Yes, the hot weather inevitably makes EM a lot worse.
I too was not a happy bunny on discovering the suicide disease thing back in 2011 when my EM was diagnosed. For what it's worth: since then i've come to understand that primary EM is usually much worse than secondary EM....having spent a few years learning how to manage simultaneous RP&EM, I've decided to think the suicide disease thing applies more to cases of primary EM. But, frankly, coping with simultaneous freezing & burning is pretty wild. Whatever, i'm still here!
Courage jlo: you're clearly a v self aware, proactive, resourceful person. You've got a lot of experience from coping with your comorbidities. You're on the right track now...things really can become more bearable...i have several EM friends on my other HU forums...and i find good company helps! Am glad you've posted here. It's good to meet you
Thank you. It is good to know that there is some support. Just having a down phase at the moment, worrying about how I will keep working if my EM continues to progress and how my employers will react if I have to keeping having time off for hospital appointments and treatments. But I will strive forward as I always do I guess. Thank you again for your support, it means the world to me right now x
I think i understand...as much as another can. Hang on in there...before retiring early on health grounds to become a consultant, i had to cope with the employer thing too...so am v much feeling for you. PM me if you feel like it....am a bit more unreliable than usual cause having a lot of fun with gastroenterology, but i do care...we're an unusual bunch: gotta do what we can together XO
Hello there! I hope you are getting good treatment and feeling better. I would love to know how you are getting on . I read your post with interest as I self-diagnosed erthromelalgia recently. I mainly have problems with my hands, less so with my feet. It began in 2012 when I had a long episode of (probable) rheumatoid arthitis while living in Hong Kong. Although the joint pain has waxed and waned, the hot painful hands have remained a feature of my evenings! GPs have been uninterested and dismissed me as "just osteoarthritis". However, last week I saw a consultant rhematologist ( Dr Rod Hughes) about an arthritis flare, and I took the oppertunity to ask him if I had erythromelagia. I showed him my photos and he confirmed it without any debate. It was a huge relief. He said that there was no effective treatment but I could try amitrypline. I'm wary of a major medication - I'm only bothered by pain at the end of the day, sometimes I'm lucky and its mild or brief in duration. 30/500 cocodamol helps mostly. Interestingly, Dr H said that erythromelalgia was not that rare! Just having the diagnosis confirmed has helped.
I find co-codamol helps but only because I feel so tipsy on it that I am distracted from the pain in my hands! I am on 25mg amitriptyline and it’s supposed to increase to 60 but my gp is incapable of understanding the consultants letter. I had a lidocaine infusion in July which helped to reduce pain by about 30% and another infusion with a higher dose in November but I don’t think it’s had much effect at all. I’m under the pain management clinic in Cleveland steeet in London. My consultant Dr Cregg thinks I have primary erythromelalgia and I am due to see him again in Feb. My GP won’t prescribe painkillers for anything just tells me to buy otc. So I’m really on my own and had about enough. On top of everything else I’m now a diabetic!!
Thanks for your reply. I'm sorry to hear about the diabetes, rotten luck. Yes, the cocodamol doesn't kill the pain as such but makes you care about it less. It also helps me get off to sleep when my hands warm up in bed. I had been getting quite depressed by it all, plus an arthritis flare that made my feet painful. I go back to the rheumatologist in May, will have lots of questions for him.
From this and your other posts, your GP sounds very unsympathetic and unhelpful e.g. inadequate care ...do you have a choice? I've seen 3 GPs at my practice before finding one prepared to investigate. He seemed open minded and now knows that EM exists! It seems that this is often a self diagnosed condition.
Have you read the book " Staying alive" by Dr Phillip Hammond? its all about getting good care in the NHS. I recommend it.
It's evening, and I'm starting to burn up as I type. time to find some cold water. x
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