Erythromelalgia

[sheltielife]

Hi, For over 5 years I have thought this was the problem starting with my feet and now progressed to my legs and gone a lot worse, but doctors denied it. I have recently found that I have thick blood under investigation at the moment as to the cause. Can anyone give me any help as to whether it could be Erythromealalgia?

[Hidden]

Hello. I was on here and other places asking about this rare disorder, Erythromelalgia (EM). I don't think many doctors know much about it in the UK - although I was given a list of EM aware doctors in Scotland by the international Living with Erythromelalgia forum. My GP certainly hadn't heard of it before although he said he had a 'dim and distant memory" of learning about Mitchel's Disease which is synonymous.

The best place to ask more questions on HU is probably the Raynauds and Scleroderma community because there can be overlap. Do you get the skin flushing when your extremities or other parts burn and are they hot to the touch as well? My neurologist said he thought it was an unlikely candidate for my small fiber neuropathy because I don't get the flushing at all - although I did when I was on Nifedipine for four months for Raynauds.

The most common treatment is Aspirin to thin out the blood and help the circulation I believe. I tried this very recently but I had to stop as it gave me nose bleeds and gastric problems.

[Barrister]

Thick blood or sticky blood may well be Antiphospholipid Syndrome. My mum has this and takes warfarin daily to prevent clots. Clemmie

[fastball in reply to Barrister]

My grand daughter had thick blood, it was due to thyroid problems, now she is on meds it's sorted. She has to have blood tests regularly.

Chris

[sheltielife]

Hi all, Thanks so much for your responses and so quickly! Thank goodness for the internet, I don't know where I would be without it and the forums like this one. Yes, I do get really red feet, legs and the palms of my hands! They look like sunburn! I am on strong pain killers as I have rheumatoid arthritis as well and they just don't touch it, the only thing that helps is my feet in a bowl of water. I don't have it too cold roundabout 20 degrees centigrade as I believe it can make it worse if you go cold. When I put my feet in it the water feels really cold and then before long I have to top it up with water out of my fridge as it gets a lot warmer very quickly and yes they feel really hot to the touch. So, it does sound as I thought all those years ago that it's the reason.

The doctors have been saying it's nerve damage, but I had nerve tests and they showed only very mild damage at the time I thought I was diabetic but that's another story! I saw a registrar neurologist who suggested it could be small fibre nerve damage but when the letter came from the consultant he said it wasn't necessary to do a skin biopsy and he had never seen me. I was really annoyed at the time, but that is years ago and ever since the GPs keep saying the same nerve damage but it never seemed like it to me.

I wasn't diabetic at all I had a pheo and Cushing's Syndrome caused by a tumour on my left adrenal gland over producing hormones. It took me 3 years of fighting to get a diagnosis even though the tumour had shown up and it was a renal specialist that sorted it out that I had been sent to due to high blood pressure. He referred me to an endocrine specialist who insisted it wasn't even though the lab had phoned the renal man instead of writing as my noradrenaline was sky high in their words. So, I paid to see a different one in Bristol (I live in Cornwall) and she said the same. The renal man kept persisting and sent me to a different one in Cornwall and at the start he said it wasn't that. I know this bit is off topic, sorry. Eventually in May last year he agreed to removed the gland and all my other symptoms disappeared. I was hoping it was the cause of my feet and legs as Cushing's Syndrome can cause capillary fragility but it wasn't.

I had another go at my GP but all he said was "I have seen something like that before" end of story. Then the renal man said it could be a vascular problem so I booked a private consultation to see one that he recommended. He was brilliant. He did a dopler test which showed I had no pedal pulses so my circulation was bad and arranged an ultra sound. However, my main arteries were OK. However, he did some basic blood tests which showed that my red blood cells where high and so I was referred for hospital blood tests which I had yesterday. I saw a consultant soon after as he had the easy quick results back and confirmed it was that I had thick blood and did talk about aspirin. However, I have to wait for the results that take longer before he can get a proper diagnosis and that's how I ended up back here by looking at thick blood and found a reference to what I thought was my feet and leg problems all those years ago.

I often wonder what doctors learn at medical school, certainly not enough and it seems the UK is way behind the American's with rare problems.

At least your replies have given me hope that one day I might be sorted out so thanks and I will look at the other things mentioned. These days it's DIY medicine!

[Hidden]

Hi - this sounds very much like Erythromelalgia to me. I've had a full 24 battery of Neuro tests now including lumbar puncture. All they have confirmed is that I have a clinical presentation of a mild small fiber neuropathy - cause unknown and not verified by results to date. I will be having a skin biopsy sometime soon so I am at least being taken seriously but if that comes back positive for SFN all that I will be offered is idiopathic as it won't show the cause.

My red bloods cells are always at the very top of normal lab range as is my MCV. My GP just brushed this off as part of inflammatory disease and confirming I have systemic inflammation but nothing more. There was a whole thread recently about sticky blood on the Living with Erythromelalgia site.

But as I've said very few doctors in the UK have heard of EM let alone know much about it or how to treat because it's so rare. If you join the Living with EM group then they will be happy to give you a list of rheumy and neuro consultants in your area who recognise and are prepared to treat it.

To his credit (and I'm really not happy with him just now) my GP did at least research EM and thiught it was a contender - hence the Aspirin. If my blood hadnt been a bit thick already I don't think he would have bothered but sticky blood is an indicator of EM/ Mitchel's Disease. I am fairly sure I don't have EM now as no flushing - but yours sounds absolutely Classic so I really would try and find yourself an NHS rheumy consultant who knows about EM and treats as part of your RA.

Take care and feel free to PM me if you want anymore info on good information and reputable forums etc but most of what I know/ am learning has been documented in my posts in this community. Tx

[sheltielife]

Hi I was certain it was this years ago as I said but doctors took no notice of me treating me as if I was an idiot and what do I know I am not a doctor that was the attitude! I see Dr. Davies at the Royal Cornwall Hospital in Truro every six months, unfortunately I have only just been a few weeks ago, however I could contact them as I have been told that if I have any concerns to ring them and they will fit me in. Mind you he might not take any notice even if I do as I have told him loads of times about my feet and legs and he is one who has said it's nerve damage! Plus, I looked back and in 2011 it was on some blood tests that he did and even then I had high red blood cell count but nothing was ever mentioned about it. I am guilty of not looking myself at the time as he did send me a copy of his report and it included the blood test results and I didn't notice at the time I just read his report! He seemed more interested in the C-Protein inflammation level markers being high. As you say he probably has never even heard of it! I suppose what I should do is print off all the answers I am getting on here and take them with me when I go to see any of the doctors. I will do as you say and join the Living with EM group now that other people seem to think I am right. Thanks so much for your help all of you as I have been struggling with this for so long and have got to the point were I can't walk without the aid of a walker as it is so painful and my balance isn't great probably because I am not walking normally and have recently purchased a mobility scooter so that I can get around myself and am awaiting delivery of a new car that I can lift it into with a hoist so that I can get my independence back. At the moment I have to do all my food shopping online.

[Coastwalker]

Hi sheltielife, try Googeling -

'Erythromelalgia and Thyroid'

it brings up connecting symptoms, I had a feeling they might be linked, but had never heard of Erthromelalgia before.

[sheltielife]

Obviously from other people's comments most doctors haven't heard of it either so not surprising that you hadn't! However, I didn't look at the connection with thyroid as I don't have a thyroid problem, but a friend of mine has and she has the same sort of symptoms like the red flare ups, burning feet and hands and really bad pain. So, must look at it more thoroughly tomorrow as I suspected that was the cause of her problems but didn't realise there was also a thyroid connection, so thanks for mentioning that.

[sheltielife]

Thanks for that I have done some looking up and sent my friend quite a few links as it might help her as well.

[Beverley-NRAS]

hi sheltielife,

have put a link below for you to the section on the NHS website about erythromelalgia:

healthunlocked.com/nras/pos...

You might find something useful there.

Regards

Beverley (NRAS Helpline)

[sheltielife]

Hi Beverley, Thanks for that I will look at it.

[sheltielife]

A while since I put anything on this particular subject, as I have been waiting to see a dermatologist and find out what he thinks, plus some blood tests done by my GP. The outcome from the dermatologist is that I am waiting to go to a meeting held at the hospital about rare diseases, but in the meantime he is also suggesting an epidural anaesthetic. I am only going off the letter he sent to my GP. It's all very vague difficult to get true answers, as I haven't been back to the dermatologist. I have looked up epidural anaesthetic and only seem to come across things like having them to do operations etc. Can anybody tell me if this is just a diagnostic thing or is it for pain relief long term? What makes things even more confusing is that I know I have rheumatoid arthritis and a couple of months ago I was told that my red blood cell count was high, meaning I have thick/sticky blood. However, the tests done by my GP last week all was normal apart from my inflammation marker! No sign of high red blood cell count and I am not on any treatment for it. Of course, one of the causes of EM is RA and another possibility, which has never been tested is small fibre nerve damage. The dermatologist would have done a skin biopsy but I have poor healing and have 4 ulcers on my feet and he said I might have problems with the healing if he did it.

[akshayv2]

Suffering from plantar fasciitis for over a year made shopping for shoe a difficult task. I had read about orthofeet and thought I would take a gamble. They are by far the BEST shoe for me. I had cleared my pain up over the winter months and was ready to get back into my walking routine. I bought my orthofeet shoes and absolutely LOVE them. Can walk three miles and have no pain afterwards. My walking shoes have turned into my working shoes. I will order another pair as soon as I have time to look and decide. Currently own the boot and now the walking so the third pair will be a charm!