Eryrthromelalgia

Lady Lee

A while back I posted about my foot problems that have plagued me for a very long time.

Someone PMed me and suggested Eryrthromelalgia

I am getting closer and closer to a real diagnosis. Not that there is any cure for it but just knowing would make this so much easier - well it would settle the big question

My new doctor is willing to investigate. Yeah!!!!

I joined a Yahoo group for those who suffer from Eryrthromelalgia. The issues they have match mine almost exactly.

REAL BONUS - one of the group members lives here in Ottawa. She has given me the name of her doctor that helps her. The literature about Eryrthromelalgia is that few doctors will ever see a case so it is hard to miss. All I need now is a referral to her doctor and we'll see what he has to say.

oh yeah The purpose of the thread

I forgot who suggested Eryrthromelalgia but

Thank you thank you thank you

Lee

minimus

what is it?

outnfree

Yeah, (thank you, minimus), what is it, LadyLee?

outnfree

Never mind....
Here ya go, min: http://www.emedicine.com/med/topic730.htm

(Can't make it a working link from my macbook -- Sorry!)

out

blondie

http://www.emedicine.com/med/topic730.htm

Lady Lee

what is it?

Well the links posted give you an idea of it. Basically I suffer from burning pain in both feet. I described it this way to my doctor last year.

It hurts so much coming here (half hour ride in my wheelchair to her office during the winter) that I seriouslyu considered taking my boots and socks off and shoving my feet into the nearest snowpile.

The pain comes and goes - worsens at night. I sleep with my feet hanging off the bed and uncovered. They are so hypersensitive that I can't tolerate even a light sheet touching them. It makes walking extremely difficult and more painful. At home I use a stool in the kitchen when I am working there. Wearing shoes and socks is a nightmare. Yesterday when I went out I finally took them off and stuffed the shoes in my backpack on the back of the wheelchair. Wednesday night the pain was so bad at 3 am that I got up - took more meds and soaked my feet in cool water in the tub. The other huge problem I had (but think I have a fix for) is wearing shoes. I normally take a size 10 women's shoe. If I buy a men's running shoe (they are wider) I buy a size 8 men's. Last mointh the swelling was so bad that I couldn't wear a snadal because the straps cut into the skin. So I picked up a men's size 8. It was way too small. So I tried the 9 - too small. 10 still too small. I finally bought a men's size 11 - equivalent to a women's size 13? And right now my feet are so swollen that the size 11 are getting snug.

elevating my feet does nothing for the swelling
anti-inflammatories make it worse
I've tried all kinds of medications and am really frustrated - nothing seems to really work or the side effects are so great they create a bigger problems

I've been tested for so many different things that at least I know what I DON'T have.

nvrgnbk

Hope you feel better, Lady Lee.

Good luck with your doctor and getting the relief you need.

Lady Lee

thanks nvr

I just typed up a response and got an error message when I tried to post it. I'm so glad it went through despite the error message

Nosferatu

Glad you're getting closer to finding out exactly what it is. There seems to be some kind of satisfaction knowing what your disorder is called. I remember how happy I was when I found out my disorder was named PTSD. I suffered for years thinking I was brain damaged or permanently psychologically screwed up. Again, I'm happy to hear that you're getting closer to knowing what it is, what it does, and how/if it can be fixed.

Lady Lee

Hi Nos

I remember how happy I was when I found out my disorder was named PTSD. I suffered for years thinking I was brain damaged or permanently psychologically screwed up.

I felt the same way before I learned about the effects of abuse. I was sure if I saw a psychiatrist that they would lock me up and throw away the key. At least with PTSD there was relief evne though getting there would be difficult.

When I started dealing with the foot pain I had found what I really believed was the problem and I suspect it might be a precipitating factor in the pain I now have. When the MRI came back as negative for neuromas I cried in frustration. I was so upset that I didn't have a neuroma (bundle of nerves in the foot that get twisted up but can often be removed with surgery)

So for the last three years we have been simply ruling out possibilities. It takes its toll. I really want to believe that we have found the name for it. But at the same time I fear finding out that it is yet again another something that placed on the list as something I don't have

Eryrthromelalgia

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