Oh goodness, I stumbled upon this forum during one of my desperate searches for answers and it feels like I have come home! What a relief to read about people who actually know what this condition is like to live with.
I have tried so often to tell people (yes, doctors too) that it is NOT eczema, psoriasis bla bla bla…somehow they always want to force me into one of those boxes. The more I say: It burns, like when you have been burnt with an iron…for days…keeps you awake at night. If you get in the bath the red areas burn exactly like a real burn would if you immerse it in warm water - It looks ugly, shoes hurt, typing hurts, walking hurts. Later redness and burning goes away and it forms huge blisters (nòò doctor, nòt little blisters like eczema) like severe sunburn - huge blisters - thick skin blisters where the redness was - then it peels and it looks horrible. Later it goes away only to come back - more in summer than winter…
The more I explain the more people shrug their shoulders asif to say: "millions of people have all kinds of eczema etc… or even worse, they look at your hands and feet asif you have highly contageous leprosy or something…
Therefore I am so thankful to have discovered you after 29 years of feeling like a hypocondriac freak due to responses I received from baffled professionals…
I was just wondering if there is anybody in the UK who could give me advice on how where to get the right medical treatment/help on the NHS?
Good morning Martlie,
I am hoping that members in the UK will come up with some names nearer to you in Berkshire than London where I am. Legend has it that the best place to be is Dundee with the team of the renowned Dr.Jill Belch!
In London the place to go is supposed to be the Royal Free hospital in Hampstead and I was at last referred there last year. I was very disappointed. I had wanted to see Dr Chris Denton but ended up in some other clinic which is a Raynauds clinic (I have both Rsynauds and EM) and I have had no help other than suggestions of possible medications which I could not take because of side effects. Iloprost infusions were suggested but then withdrawn which I couldn’t protest about since I had read that they are contraindicated if there is an existing heart condition which unfortunately I also have. I was given a further appointment which turned out to be with a Raynaud’s nurse and was pointless. Other people have a quite different experience at the Royal Free so it would be worth trying. Your referral letter should stipulate that you want to see Dr. Chris Denton and I fear that mine did not.
In my search for help I was sent to several dermatologists and eventually arrived at St. Thomas’s. I was referred by them to a neurologist In the same hospital for myoclonic jerking which in my case starts up along with the heat of an EM flare. I flared in his office and he named Erythromelalgia immediately which was really exciting as I had already decided that EM best fitted my flaring. He remains the only doctor I have seen who is still trying to help me and is currently referring me for small fibre testing and a skin biopsy. Back at the Urticaria clinic - skin rashes also appear with the heat - they needed a lot of persuading that the neurologist was correct. They held a ‘Grand Round’ and about 50% of the doctors I saw thought it could be EM but the rest I felt sure had not heard of it. Eventually the diagnosis was confirmed. I was sent to Guy’s to the Lupus Clinic where Lupus was ruled out but since I was flaring dramatically the head of the department, Dr. d’Cruz immediately said “classic erythromelalgia”. He then said he could not prescribe anything which might not simply make the Raynauds worse and referred me back to “the care of your GP” which meant no care at all. I wish hospital consultants would understand that where rare diseases are concerned many GPs won’t educate themselves and more or less wash their hands of the patient’s condition.
In general terms, wherever you are sent, do arm yourself with information about EM and photos of your flares. I had a funny moment at St. Thomas’s when I mentioned that I also had facial flares and the doctor pretty well rolled his eyes and said wearily “that is most unlikely” whereupon I whipped out a photo of a pale faced me in the middle of the night with fiercely flaring nose and ears. Definitely one point to me.
I am very busy at the moment. My baby grandson who lives here is poorly and my services as chauffeur are needed to get him to an emergency appointment at some distance away. When I come home I will look further.
All the best
Nel
I am new to this forum as well - and have found it amazing, such generous and kind support and advice. I am not in the UK right now (I am on holiday in Australia for a few weeks, and am just getting over pretty much the worst flare up of what I now think is facial erythromelalgia, that I have ever had). When I get home I will be going to see my GP armed with a range of questions, suggestions and evidence (photographic)...if I have any luck or good treatment options I'll be sure to let you know.
This time I managed by taking aspirin, ibuprofen, anti-histamine (Fexotabs) and using cooling packs and lots of vaseline in an attempt to keep my burning skin supple - I'm not sure if the vaseline worked as my skin did the usual thing of hardening, cracking and peeling BUT crucially the vaseline did not sting and it helped the sloughing process as well, and I don't seem to look quite as ravaged as I normally do after a flare up.
I wish you the very best of luck, and agree with you that this forum is a wonderful place full of wonderful people xxx
Like most people I arrived here due to doctors not listening to me! What a relief it's been to find that I am not mad as some doctors imply! When I first arrived here I was told that there are only a couple of doctors in the UK that know anything about it and they were in Scotland and I live in Cornwall, not really convenient, especially as I have other health problems I daren't fly as my blood is thick and so it's dangerous liable to DVT. Driving would be out of the question. However I have just changed my GP a couple of months ago and for once I have found someone who listens and doesn't make out that I am some crazy person! I saw him yesterday and he was brilliant. I printed out the page from the association and thank goodness he took note of it. He admitted that he had never heard of it before, which makes a change for a doctor to admit that. He had a student with him who is doing her time at the practice and she had never heard of it either. I also printed the NHS Choices pages so that they couldn't say that the association isn't reliable. I don't know the exact cause of my EM as the trouble is I have 2 of the causes, rheumatoid arthritis and secondary polycythaemia, previously Cushing's Syndrome but that is cured now as I had my adrenal gland removed last May, but it could have caused peripheral neuropathy another cause of EM. So, it is difficult to know the cause. He was very interested and I had spoken on the phone the day before and he had obviously done some looking up before my visit yesterday. He was very appreciative that I had brought this to his attention, amazing! Anyway, he had given me Pregabalin to try at a very low dose at first only 50 mgs a day when the normal starting dose is 5 Mgs three times a day, the reason being is that I had a serious drug interaction when I was put on Gabapentin, but on too high a starting dose in view especially as I was on another drug for the arthritis pain. I was terrified of trying the Pregabalin as it's very similar, but he said if I started on this very low dose then I wouldn't have the same problem and it might help. I took my first one last night and up to now no problems. If it is OK then he will up the dose slowly. I am just praying that it will be a help eventually, not a cure, but if I can get relief of symptoms that would change my live. It is only thanks to this group that I have managed to get this far.
Like most people I arrived here due to doctors not listening to me! What a relief it's been to find that I am not mad as some doctors imply! When I first arrived here I was told that there are only a couple of doctors in the UK that know anything about it and they were in Scotland and I live in Cornwall, not really convenient, especially as I have other health problems I daren't fly as my blood is thick and so it's dangerous liable to DVT. Driving would be out of the question. However I have just changed my GP a couple of months ago and for once I have found someone who listens and doesn't make out that I am some crazy person! I saw him yesterday and he was brilliant. I printed out the page from the association and thank goodness he took note of it. He admitted that he had never heard of it before, which makes a change for a doctor to admit that. He had a student with him who is doing her time at the practice and she had never heard of it either. I also printed the NHS Choices pages so that they couldn't say that the association isn't reliable. I don't know the exact cause of my EM as the trouble is I have 2 of the causes, rheumatoid arthritis and secondary polycythaemia, previously Cushing's Syndrome but that is cured now as I had my adrenal gland removed last May, but it could have caused peripheral neuropathy another cause of EM. So, it is difficult to know the cause. He was very interested and I had spoken on the phone the day before and he had obviously done some looking up before my visit yesterday. He was very appreciative that I had brought this to his attention, amazing! Anyway, he had given me Pregabalin to try at a very low dose at first only 50 mgs a day when the normal starting dose is 5 Mgs three times a day, the reason being is that I had a serious drug interaction when I was put on Gabapentin, but on too high a starting dose in view especially as I was on another drug for the arthritis pain. I was terrified of trying the Pregabalin as it's very similar, but he said if I started on this very low dose then I wouldn't have the same problem and it might help. I took my first one last night and up to now no problems. If it is OK then he will up the dose slowly. I am just praying that it will be a help eventually, not a cure, but if I can get relief of symptoms that would change my live. It is only thanks to this group that I have managed to get this far.
I couldn’t be more grateful for this site either! To hear from others that sound just like you is nothing short of a miracle after being called crazy for so long. I unfortunately am not in the UK so I can’t help personally with your search for a doctor other than inviting you to search under the members services / doctors. I just wanted to let you know we are glad you found us too .
I went to the Royal Free but also found Chris Denton not to be interested in EM although it is in his medical portfolio. He seems really to be interested in people with Scleroderma but is also supposed to be interested in Raynauds although others have been given the same line as Dr D'Cruz gave Nel
Dr David Bennett at the Radcliffe Infirmary at Oxford is a neurologist who specialises in primary EM. He might be worth seeing simply because he does the genetic test for primary EM. Then at least you know. He is not so interested in secondary but has kindly agreed to see me from time to time for pain management.
There is a neurologist that specialises in facial EM at the National Hospital for Neurological diseases NHNN in Queens Square. I forget his name but if you look up Elizabeth on this website you will find her posts.
I have found Dr Michael Lunn the most helpful neurologist for me so far and the one who considers a wider range of possibilities and is not so narrowly specialised. He is willing to take on secondary EM. He is also at the NHNN although I went to him privately at the Queens Square Consulting Rooms. I have found a combination of neurologist and dermatologist helpful. Three dermatologists did the routine cryoglobulin tests and took skin biopsies which were negative for vasculitis but Dr Lunn pushed it a step further and did a nerve biopsy and did find vasculitis which I am currently being treated for and will post the results when the treatment is completed. Apparently cryoglobulins are difficult to find when the temperature of the sample goes outside a particular range and I liked the way Dr Lunn persisted.
Dr Bennett recommended Dr Vanessa Venning at the Radcliffe as a dermatologist. I have not yet been to her but it could be helpful if they work in tandem.
I wish you the very best of luck Martlie and will keep an eye out for your posts in case I can add anything useful
Hi Martlie,
I have not been able to find anyone nearer than central London. A tentative name in Bristol and another in Wrexham is the best I have been able to find. I found ajh’s post interesting. I think I have given up hope in the Royal Free:(. You might try contacting Dr. Venning since Dr. Bennett recommends her. I didn’t mention Dr. Bennett since his interest is in pain management but he is knowledgeable about EM and well spoken of.
I am sorry we haven’t been able to help you further. Our moderator mads may be able to help with more suggestions when she comes back.