Treatment option's in the UK

Hi I am sure that this question is going to of been asked a few times before. But can anyone suggest any treatment options for EM. I live in South Wales, UK. My GP has admitted she has very little knowledge of this condition. We are both trying to work out what is the best treatment option for me and we do not appear to be having much luck. I am currently taking Aspirin, as this was suggested and whilst this worked initially on top of my gabapentin and paracetamol. I am now in a lot more pain than I was before. I have also tried Morphine tablets which just gave me a constant headache, made me really irritable and I was still in pain. I have also tried Lidocaine patches but these again only worked initially. Also, as the pain is predominantly on the soles of my feet, it was very difficult to walk on these patches.

Is there perhaps anything else that anyone can suggest, to be honest I would suffer with the pain, but I am getting married 8 weeks tomorrow, to my amazing partner. So for just one day I would like to be completely pain free to enjoy the day.

If anyone can help it would be gratefully appreciated, thankyou :-)

Hi Christine,

I also live in the UK. You need to ask for an urgent referral to a specialist. I see Prof Jill Belch at Ninewells Hospital in Dundee, another good doctor there is Dr John Dick. I know that is far from you, so I hope someone else can tell you of a specialist in London. Whichever hospital you go to, you need to see an expert in EM, it's just too rare to see someone at the local hospital.

There are several options. Aspirin only works on one particular form of EM, if it helped then perhaps you need to go onto clopidogrel. You may need to increase the dose of the gabapentin that you're on, and if that doesn't work, ask if you could try pre-gabalin (Lyrica) or carbamazapine. There's also drugs like diclofenac and nifedipine. I've also recently had a lidocaine infusion, so prehaps you can find out if that's an option, as it works in a completely different way to the patches.

A huge thing you can do to help reduce the pain on your wedding day is to start trying relaxation techniques. Unfortunately, EM is made worse by stress, so you really need to reduce your stress levels, if at all possible. I know that is a difficult thing to do!

I really hope that you can find something that helps you and allows you to enjoy your wedding to the full. I hope it's a wonderful day. Good luck!

Hello Christine

Hello Christine

Prof Carol Black at the Royal Free in London diagnosed my EM. Although I really sympathise with you I do not think you are suffering as much as some people. I too do not suffer that much although it is painful I have learned to live with it without any drugs although I was offered treatment. I have found deep breathing helps alot as it gets the oxygen circulating around the blood vessels. Do try this and let us know if it helps. Also, I keep my whole body warm in the UK when it is cold, Never let your feet or hands experience quick changes in temperature as it can bring on an attack. If I get things out of the freezer it can bring on an attack in the middle of night when my hands burn. It is such a stgrange condition. I get up most nights to let the actual bed cool down and go back to bed to continue my sleep after reading a bit or writing a list. Good luck.

Lyn - now living in Cape Town

Hello Christine,

Like Starsmurf says, you really need an urgent referral to someone who knows about EM.

When I first joined this site there were not so many members but I noted that some had been diagnosed by a rheumatologist.

Might be worth asking your GP to do the same. Rheumatology deals with Reynauds which is a condition that some members here have along with their EM.

I asked my doctor for a referral to Rheumatology on the strength of what I learnt here and last week finally had my appointment and confirmation of EM. The rheumatologist had only seen three cases of EM before mine. She said that if my EM got to a point where my current medication (Amiltriptyline) became ineffectual then I could try Duloxetine (Cymbalta) and if that was no help then she would advise a referral to Prof. Chris Denton at the Royal Free Hospital in London. He is the main man for EM acording to her and London would not be so far to travel for you.

We all have different levels of EM and what is really bad for some is not so bad for others. I don't get the shooting, stabbing pain some describe - mine is more like walking on a bad bruise and isn't constant. No one can experience another's pain - our thresholds are all different.

I hope you get the help you need in time for your wedding day and also hope that the sun shines for you.


Dear Christine, I'm so sorry to hear that you're struggling, I have always found that GPs are fairly useless when it comes to our condition. My tactic has been to do as much research as I can and take it with me when I visit the GP and ask for specific referrals. I can recommend a lovely doctor at Kings College Hospital here in London. Dr Dave Bennett is a consultant neurologist and also a respected pain specialist. Depending on your type of EM, referral to a neurologist or pain specialist could be a good start. My EM is primary and caused by a genetic mutation in one of my sodium channels, however I understand that EM can also be vascular too, in which case a rheumatologist may be a better option. The team at the Royal Free Hospital headed up by Professor Chris Denton are experienced in treating EM too. In addition to taking imipramine and nifedipine, I also have an infusion of a drug called iloprost (prostacyclin) every 6 months which is also provides relief from the burning pain. Iloprost is also used to treat Raynauds as it opens up the blood vessels. I hope this is helpful. Have you been on to Good luck.