Hi, i’m Hannah and im female 22 living in sheffield england i have just been diagnosed with EM.I’ve been dealing with the pain of EM since i was a kid but i’ve only just been diagnosed with it. It started when i was little noticing purple patches in my legs. i went to Southampton hospital to try and get answers however at that time no one knew what it was and they didnt now why i was in so much pain.It’s only been while in sheffield that i’ve really started to get help medically with it. However it’s gotten worse the patches have spread and when i have a flare up my feet and leg go bright red. I currently work at tescos but i can’t do prolonged standing as the pain is too severe. I don’t really know what to do in terms of work and i know next to nothing about the benefits system in the uk. Im fed up with just dealing with the pain. I’m currently seeing a dermatologist woman who has prescribed me amitriptyline. I feel like it isnt working i get exhausted on them i spend more time asleep than awake and she keeps telling me to stick to it even when i say it isn’t working. So i don’t know what to do does anyone have any advice on things that could ease the pain or how the uk benefits work ?
I am really sorry to hear about your pain and diagnosis. I would start by reading through the patient guide (here)[https://erythromelalgia.org/]. Next, read through the medical options at THE MEDICAL TREATMENT OF ERYTHROMELALGIA | MedicationSense.Com. I am slowly trying different combinations of drugs from that website.
I am unsure as to how the uk benefits work but what @alexw said is a great starting point. The TEA and Dr. Cohen’s site are wonderful places to start. It will likely be hard to find a physician that will be familiar with EM so it might be worthwhile discussing with your primary care doctor about it and bringing in some of the articles on Dr. Cohen’s site about what EM is.
I live in Birtley Gateshead, England.
I’ve had a back operatiion. I had burning heat in my feet, but it was thought nerve damage.
Then burning started in my hands.
After numerous visit to different parts of hospitals I was diagnosed with EM.
I now have difficulty holding things in my hands. My feet I find it hard to wear full shoe too hot.
I have had amitriptyline yes they do make you so tired. Norititriptyline is meant to be a more clean drug, but I’m still tired with these.
Can’t tell difference between them if I’m honest.
All I can say is you so need your doctors support for benefits. Go talk and explain to your GP.
All very best
Hi there Hanna,
I am sorry also, and sympathise with your situation.
I too am in the Uk ( Scotland)
I will refer you to the Benefits and Work website: https://www.benefitsandwork.co.uk/
Before you start on that route.
They have a free newsletter and you can also check(There is a very good tool on the site), If & what you are entitled to in your situation. It is different in different parts of the uk. It is a bit complicated.
It has all the information/copies of the forms and Questions, and an interpretation of what they are actually asking(invaluable) , and a forum also. Everything is always updated when there are changes.
It is the BEST, most comprehensive site I have found, independent and informative.
Your Local Citizen Advice might also be helpful,They have basic information online also. (CAB. )
Your local council might also be helpful if you check online, they usually have links to various local organisations?
I know nothing about UC, but have Dealt with Dla, Esa And now PIP claims for my husband for many years since his Brain Haemorrhage as I am his carer.
R : Treatments:
Joe’s suggestion is a very good one.
Do you know if yours is Genetic?
Typing in ‘Erythromelalgia’, in the’ search’ facility on the NHS website, there is information online, though not a lot. There are a few links to UK sites ie ,STRUK, etc
I cannot advise you on treatments as I am struggling with working out what works for me. It is little known in the UK it seems.
I have Raynaud’s also, so its complicated
It is only the start on my medical journey since I was only recently diagnosed myself ( nov 21)this was due also to ‘pandemic modes’ in the last a couple of years!
My GP had to look it up, admitted that he could not be very helpful, but did refer me on again.
I very recently had a Cardiologist in hospital ( possible heart problem ) look at me as if I were an alien when I said that the swollen knobs/ heat etc on my ankles were EM.
Thank goodness I was promptly referred to outpatients cardiology for tests, and the consultant there had at least heard of it.
I did have to point it out and explain my symptoms etc.So always mention things that you feel is important.
It is a bit different here in the Uk, but getting yourself informed is very important.I am presuming that you are using the NHS, as private care could be different also.
I hope that this can give you a start to figure out your next steps and hope that you are able to get any help you need.
All the Best.
May your tomorrows, always be better than todays!
Hang in there. The topical brews from Mayo did little to help me. So I finally migrated to oral - Venlafaxine. Didn’t do anything for me until I hit 150 mg (started at 37.5 mg). I ended at 225 mg. It results in frequent confusion, but it really helps me sleep and exist.
Best of luck!
on my letter it just says erythromelalgia however i believe it genetic i went to a dermatologist to get diagnosed. ive always had the condition and i honestly cant believe how painful it is !
My sympathies with your situation Hanna, and do feel for you.
I can only repeat my advice to look through the sites and also ask your gp if it would be possible to get the genetic test done, or get referred to a pain management clinic in your area at least. There is some information about that on the NHS site.
All the best.