What to do now?: Hi all. I've had this... - The Erythromelalg...

The Erythromelalgia Association

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What to do now?

Hi all.

I've had this red burning in my feet and hands for many years now. I just took it as normal for me. I first got it around 15/16, I was a dancer and after dancing my feet would be on fire and so, so red.

It would happen after shopping for a bit, my feet needed to be on something cold. It happens to my hands when they get hot.

It's been getting worse, even reading a book is causing my hands to be flaming hot and red. So I googled and realised that this fits my symptoms perfectly. Even all the photos look like my feet!

I also have a number of connective tissue disorders, I don't know if there's any involvement with that.

I don't really know what to do now though. I'm in the UK, but I can't see any number or anything to call for advise. I don't know where I'm supposed to go now. If I go to the GP do I ask for a referral somewhere? I can't see anything at all.

Thanks for any advise.

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rosesinbloom

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12 Replies

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25346 years ago

Hi rosesinbloom

This is a long shot but it may be worth checking out erythromelalgia as well as all the rest. The need to get your feet on something cold can be a signal. It is very rare, so it is probably not that. I took years to get a diagnosis and even longer to get a treatment. Because you started young, it could, repeat could, be primary erythromelalgia, i.e a mutation in the genetic code. Or it could be secondary to a connective tissue disorder. The best way to find out is to be referred to Prof David Bennett at the John Radcliffe Hospital Oxford, who only treats primary, and he will give you a genetic test so you know where you are. The treatment that follows a primary diagnosis can be different from secondary, so you would be in the right place to get the right treatment. I hope I am wrong but it is worth going for the test. There is also a ‘Living with Erythromelalgia’ website on the Ben’s Friend portal and there is good chat with others who have it.

Best wishes

2534

rosesinbloom• in reply to25346 years ago

I'm thinking that's what it is. The photos of peoples hands and feet look exactly like mine and the same thing causes it, walking, exercise, and using my hands.

It's also a lot worse at night.

Oxford is a little far from me. If it was confirmed I have it, I wouldn't be adverse to going to Oxford for genetic testing, but I suppose I'm worried about wasting their time and mine. I'd have to stay over as due to other issues, I couldn't make the round trip in a day.

2534• in reply torosesinbloom6 years ago

Hi roseinbloom. The good thing about David Bennett is you get a genetic test on the NHS for free. As EM is rare there aren’t many practitioners who are really knowledgeable. You won’t be wasting Prof B’s time as he is also a researcher so if you are primary you have added to his research cohort. Because EM is rare few people are specialists in it. There is Dr Lunn at the National Hospital for Neurology and Neurosurgery and that hospital generally is excellent for neurology.

I went round the houses for years trying to get someone who is knowledgeable and who would take me on. So for example I was referred to the Royal Free in Hampstead which took six months. Then the consultant there who did know about EM wouldn’t take me on and it took another six months to get another referral. You can search the EM chat community as there may be people in Norfolk and Scotland other areas. All best. 2354

rosesinbloom• in reply to25346 years ago

That's interesting as I was looking at the Royal Free as I had joined a group yesterday who were very helpful and have sent me some details of hospitals, and that was one that was on there.

Did they not help you? Did they at least diagnose you?

I live in London, so Oxford is probably best, it's just it's difficult for me to travel and I would have to get a hotel so was hoping there would be someone more London based.

2534• in reply torosesinbloom6 years ago

I forget the professor who saw me at the Royal Free. He was

Really looking for patients for his scleroderma research. Again you could search the EM chat using ‘consultants’ there is a long thread or two on that theme. I think the NHNN is brilliant for things neurological and I believe Dr Lunn is the clinical lead for Neuroimmunology. He works closely with Prof Bennett in Oxford. I would ask for the genetic test to see if it is primary. You can waste a lot of time otherwise. All best xx

rosesinbloom• in reply to25346 years ago

Did he diagnose you?

Sorry, where do I find the EM chat?

2534• in reply torosesinbloom6 years ago

Hi there. livingwitherythromelalgia.org/ is the site for EM chat. The TEA is also a good site on Health Unlocked. Personally I would go to the NHNN for erythromelalgia before the Royal Free as the NHNN is a specialist centre of excellence for neurology. I had already had a diagnosis for EM well before seeing the consultant at RF, so he agreed that it was EM but then didn't help I had got the first diagnosis privately but realised I needed to be on the NHS, so was looking for a NHS specialist. Prof Bennett and the NHNN are NHS.

As it is so rare I do think it is unlikely that you have EM but this would be the most direct way of finding out. We all took years to find someone!!

I think the consultant I saw at the Royal Free was a rheumatologist and I now know that a vasculitis specialist is way better than a rheumatologist. In my case the EM is secondary to vasculitis. For vasculitis the best man is Prof David Jayne often referred to in this discussion group. He can get the most advanced meds on the NHS. I met someone there who travelled from the south coast (with wheelchair) to keep with him! He is at Addenbrookes in Cambridge which doesn't sound convenient for you, but he recommended Dr Oliver Flossman in Reading I think or Raashid Luqmani in Oxford, which are at least a bit nearer.

Good luck with all this. it can seem disheartening at first but eventually you find the right person, get some treatment and it becomes more manageable and less overwhelming. I know how difficult to get about it can be when you have one of these kinds of illnesses.

Take care xx

rosesinbloom• in reply to25346 years ago

What could it be if not? I understand it's rare, it's just I've had these symptoms for almost twenty years, my hands and feet are so red with exercise they look distorted.

Is there something else it can be?

If it's most likely not as you say, I'd rather not go all the way to Oxford really.

2534• in reply torosesinbloom6 years ago

I am very hesitant to be definite in all these discussions as I have no training to be able to give a medical opinion and I could mislead if I weren’t cautious. One option I could suggest is get the referral to the NHNN which is in London (Queens Square) so not so inconvenient for you. I would ask your GP to mention the possibility of erythromyalgia so you don’t end up with someone who knows nothing about it. Dr Michael Lunn is a good person to start with as he is experienced with EM and Vasculitis. He was the first, after many, to get a proper diagnosis of Vasculitis by sending me for a nerve biopsy. I had a good neuro surgeon at NHNN and dr Lunn briefed her in a way that would get a good length of nerve to test. Sometimes they don’t take enough and you don’t get a positive result when you should. This is the benefit of going to a specialist hospital like the NHNN. If EM is confirmed by Dr Lunn you can ask primary or secondary ( and if secondary, secondary to what?) and he may be able to get a genetic test there or he may suggest David Bennett in Oxford but you will know you have it then so it would definitely be worth your while going. Just a thought. Take care

rosesinbloom• in reply to25346 years ago

I understand you, obviously I thought it was probably this, that's why I came here,

I'll have to take some time with this. It's weird, this has been going on for so long, it's been a bit of shame for me, especially around dance, people pointing and asking what's wrong with my feet. I just took it as 'me' you know?

My face being on fire and never cooling for the whole night, I felt ashamed of it.

Then looking for some remedy to help this burning in my hands when reading I found all of this and the photos of the feet and hands, look just like mine and it's a little overwhelming that it's possible it's this rare thing and the options for diagnosis. I'm also slightly scared of neurologists, which probably sounds really silly, and I have no idea which choice of doctors to go to is the best fit for me.

I know my GP will probably not know it at all and I wonder what they think of me with never ending conditions.

2534• in reply torosesinbloom6 years ago

hi there rosesinbloom

I probably look/feel different in some respects from you, and vasculitis seems to show in many different ways and different severities, but I look odd in that I cannot wear anything from knees down except Fitflops, and my lower legs are all red and blotchy. When I go into a new crowd I feel very foolish and ashamed of how I look. Obviously something's wrong. So I know a bit what you mean although for me this is the last 10 years, not way back to 15/16 yrs old, like you. Also having to explain again and again and having to remind people that I cannot stand and talk as it gets very painful.

I think when you have had something for a long time it can become a bit of your persona, so it feels odd and a bit scary to change it. Then again the thought that nobody can do much about it is a bit scary too. I would support you having a go. you can find meds that take the edge off it all and make a difference, especially with vasculitis. A friend had something that laid him low for ten years and meds didn't do much. Then the research team actually found something new that worked a treat. So much is changing in medicine. But you do feel better if you are seeing someone that knows what they are doing. And you are then minimising further damage. I finally have found that a particular medication has produced a 10-15% improvement and it has made a difference to my life. So it has been worth it.

I have a smaller social circle than I had before all this, but these people see me as a person not a pair of red legs! So keeping kind company has been crucial for me.

You are right, GPs hardly know anything about some illnesses, but you could print off your chat with me plus anything else which looks right or possible to you. You are entitled to a referral to a specialist. And the NHNN is an appropriate choice. I haven't experienced any pain with any of the tests. I was meant to feel a twinge when they did the nerve biopsy but I didn't. They wont push any thing on you without consent. So you are in control. These guys are interested in you!!

So try and take the leap. it may be something else but you will never know if you don't go.

Take lots of care rosesinbloom. May you be well

rosesinbloom• in reply to25346 years ago

Thank you for your kindness.

Yes, when you have something for so long, especially without a diagnosis, it kind of feels it's just another part of you, instead of anything being actually wrong, if that makes sense?

I'll definitely go further with this. At night it's getting very hard to read due to the burning, it's so uncomfortable. The feet I've lived with for so long now.

Your information has been so helpful going forwards. I know where and how are knowledgeable in the field. Thank you.

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