Hello all

I find this group very helpful. I’m writing from London and feel extremely isolated living with EM, fibromyalgia and Raynaud’s. I’m the only person in my family with these issues. My late father had EM. But my 5 other siblings escaped the hideous pain I live with daily. We have the wonderful NHS here but to be perfectly honest it is far too over whelmed to provide decent, intensive care or treatment for chronic, long term conditions such as EM. General practitioners are time poor and most often are not familiar with EM. So I am left with no option but to take various tablets daily which are not helping me at all. I have Em on my face, hands, toes, feet and all down my thighs and calfs and worst of all on my knees. The pain is non relenting despite all my efforts of self care. I just wanted to say thank you to all who post here. It really does help me.

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I am sorry that you are not finding much relief and are feeling isolated. It is such an odd disease. Sometimes I just lie to people when I need something to relieve symptoms because explaining what is really going on is such emotional labor. Are there no specialists where you live?

Hello Jalika

Thanks for your kind words. I am under the care of one of the leading hospitals spealising in the area of EM in London. I’m just feeling a little bewildered coping on a daily basis. But I’m hanging on in there. Thank you again.

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Hi there, I feel for you love, I have had EM for over 15yrs and feel isolated also. I live in Leeds, not many doctors know about EM and getting to see a specialist is a nightmare. I am taking 150mgs twice a day and still suffer badly with flare ups. Walking, alcohol and stress seems to make my EM worse. I have had a sympothectomy done twice and it did help me alot. I hope you can get some relief and help soon. It’s a lonely disorder and people don’t understand it. If you need a friend or just someone to moan too I am here for you. Good luck love x