Our stories are important. Will you share yours?

Please tell us what being a member of Ben's Friends Living With Erythromelalgia means to you:

Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!

In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in youlife and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!

It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.

Your turn! What has Ben's Friends meant to you?

Will do but probably tomorrow now.

That's great, sheltielife! Our donors keep the lights on here, and our stories will help them see how much we appreciate their generosity!

Had it not been for here I would have never found out what was wrong with me! Non of the doctors I saw had the slightest clue what was going on and kept just putting it down to nerve damage. It must be at least 5 years ago that I found the EM group but I didn't join at that time I just knew that EM was the cause of my feet and leg problems, but no doctors had even heard of it.

Then eventually I did join and got doctors to look at it and at long last I found one that agreed that was the reason I had this problem. I am pretty sure that had I not done that I would still be searching for the reason of my symptoms.

Not only that I have found a lot of useful things to help and reduce the pain. I have also met quite a few friends as well.

The more people that get involved the more doctors are going to know about it.

I was diagnosed with EM 4 years ago by a neurologist in T/O Canada
He new what it was right away I probably had it for a year and did not realize
After getting plantar fasciitis which could have been the Cause .
He had not seen one person in his career and another doc that he sent me to also had
Only seen or 2 her her career so not enough is known so these sights are very important .
Mine started off mild then got worse and worse that is tipical of EM . We have tried many drugs .
Gabapentin and Lyrica also oxicondone for pain still the flare ups happen due to heat and some foods . I also have burning in my body nights of course are the worst so very hard to deal with .
I have stopped work a year ago could not do it any more and I loved my job.
We will still keep trying my doc is amazing I was very lucky Great man

Hello all, I wanted to let you all know that Ben's Friends support group is the only way that I have contact and support from others with EM. Thankfully I have a rheumatologist that knew what I had, as she had one other patient with similar symptoms. She tries to help me by trying different medications and will at least see me, as other specialty doctors just say they can't treat me.

Being able to communicate with others around the world that have EM really helps practically and mentally. We share tips to help us get through this difficult problem called EM. Sometimes, we can even share what medications have helped and mention that to our doctors. Also, little things like what sandals someone can tolerate can be helpful to another person with EM.

I am truly thankful for this support group Ben's Friends!


Yes I think this ska great sight we can learn from each other
I do think it’s sad that some docs will not see people with EM that has happened to me not right
I have a good one but he will have to retire soon he is 70 .
It does worry me as I get older have had it 4years and can see it getting worse some times I don’t want to be here think my lovely husband would be better off . It is all over my body in the form of burning I have tried so much and a lot make it worse each day is a struggle as for many others
I was so energetic before this .

Hello to all,

This is the place I go to every time I feel like I am the only one suffering and no one understands. I get new information, great ideas, and have learned I am not alone. Thank you Ben's Friends for your support!!!

Hi Silverlining,
Nice to hear that being here is helping you.

Hi ,

I am a 63 year old Female in Arkansas. I started having problems with my feet and hands about two years ago, they become very hot, red and painful. I did a lot of research, printed all the material I could find on this. I took this to my GP, and she diagnosed me with EM. I have tried to determine why I have this! I do not know who to go to in order to get to the bottom of what may cause this, any suggestions would be helpful.

Glenda B

Hi Glenda B,

I did exactly the same as you except I took along my iPad to show various doctors what I thought was wrong with me. I didn't find a single one that had even heard of EM! However, showing them made them consider it.

As you will know the trouble with EM is that there are a variety of causes and even it could be primary or secondary so it's very difficult to know where to start. Did your GP not have any suggestions as to who to see?


It means I have a place to go to see what has and has not helped others through this.

Nice to see you have already contributed to this TwinMommy

Hi Glenda ask doc to send you to a neurologist , rheumatologist ,dermatologist ,if you have nerve pain with it you will need mess to help I was lucky my neuro diagnosed me right away . You need to find some one that work with you some won’t or can’t that I don’t understand docs are always supposed to help if not make an effort to send you to some one who can . It has been said EM sufferers have to be they own advocates and push for help because some people have had luck in getting better than they were there is no cure But !! You could fine a drug or drugs that will give you a better life . Stay well and keep moving try swimming you can keep cool .

Hi does anyone know how many members

There are at the moment 1,287 you can see that if you hit the members tab.

Ok thanks does that include other country’s

Yes all countries