My 14 year old daughter has recently been diagonosed with erythromyalgia.
Last year she lost her ability to walk at a normal gait.
She has burning pain on the bottom of both of her feet.
Her fist diagnosis at UCSF Children's was CD (Conversion Disorder: a Psychosomatic disorder), because they (UCSF) did not take the time to research. This drove us crazy trying to figure out what the "stressor" made her lose the ability to put weight on the soles of her feet.
Next we went to Shriner's in Sacramento who had the quick diagnosis of RSD. They said there is no treatment and it will eventually leave her body.
I would not settle for this diagnosis because she had the burning pain on both of her feet and the only pain relief she recieved was from soaking her feet in cold water.
She is Now at Lucile Packard children's hospital in Stanford with the Pain Clinic team. They diagnosed her with Erythromyalgia. She has been there for three weeks with an epidural catheter.
Any one out there that has experienced this rare disorder?
Thank You.

Hello Bellndom and welcome to NeuroTalk.

I'm sorry, I am not familiar with Erythromyalgia but I do hope someone else on here has some information for you.

It really makes me angry when doctors use Conversion Disorder as a diagnosis. I am learning many doctors use that term when they do not understand or have no explanation for symptoms.

I wish you and your daughter all the best

--is considered by some experts to be a variant of Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), given the pain symptoms and the trophic changes in skin.

Take a look at :

http://www.neuro.wustl.edu/neuromusc...sory-pain.html

--which describes many of these related syndromes.

Hi from Seattle. My daughter is 17 also has EM . What a shocker. We thought something odd was happening with her Raynauds ! While in Tahiti this year she had very bad episodes that led to Children's Hospital visit when we returned home..and a diagnosis. The docs there are wonderful. She is going to try bio feedback training. Any other parents out there with "EM kids?" School has become a bit of an issue at times with the pain and redness. Hands, feet, nose and at times ears. I have not read anything about this, but during or after episodes on her hands...the skin on her knuckles gets rough, wrinkles and appears 'old'. ?? Her joints also ache, which with initial visit the doc said are just "growing pains" . They are directly related to the episodes we are finding. Would love to exchange information as we are very new to this.
Thanks!

Welcome Bellndom & Kainoa.

I am so sorry you have to be here. As awful as having crps (rsd) is (I agree that Erythromyalgia seems to be a variant), it always makes me feel worse to hear of such young people developing it. I have lived enough of my life without pain... I just wish your kids could too.

There are several young people here who could answer questions for your children, and offer them support and/or hope. They are intelligent, sensitive people who would be happy to help in any way they can... as would any of us.

I'll keep praying, like always... your kids will be tops on the list.

I know that being new here, you'll find it confusing at first... at least I did, lol. You should go to the "Reflex Sympathetic Dystrophy" forum, and post under "Our Stories and Introductions". You can just copy and paste the stories here, if you want to... or you can create newer, more detailed ones. (I had to do this also, lol... at first I didn't realize that there was more than one place you could post your "I am new" stories).

Thank you for your replys and your prayers.
What is this Bio Feedback training?
She gets out of the hospital next week.
We as parents are struglling with how to give her the incentive to want to walk on her own. She works very hard for the PT staff but just wants to lay down after PT because she is so tired. She is currently on ant-deprssents and seems to be her normal happy self during the day. I wonder if this blood flow problem has something to do with her fatigue?
Any ideas on how or when my daughter will have th passion to walk?
Thank You
JR

hi, I'm really sorry to hear that your daughters erythromyalgia is so bad she cant walk

i was just diagnosed with erythromyalgia and I've had it for about 6 years, I'm almost 20 now.

i've been to 13 different hospitals around where i live and then after all these tests and all these doctors not knowing what it is i decided to once again to get a different opinion. i went and saw a doctor who sent me to a 2nd cardiovascular doctor and he knew what i had! but there was only a paragraph about it, so he went and researched it for a week and told me to come back.. and he's found treatments for it!

there's a certain nerve group near the spine that control the flare ups and having a shot of anesthetic, from an anesthesiologist, in that nerve group can help. you might have to get it more then once and hopefully it will be a permanent change.

He told me there are other things i can try but i haven't been to the anesthesiologist yet..

so my advise is to get her to get a refferal to se a cardivascular doctor.. who knows what erythromyalgia is.

i have a question.. is she able to go into the sun? i ask because i cant with out getting a bad flare up. i was told the "flare ups"(is what i call them) was that the little blood veins get clogged or inflamed.

Hello Tiffany! Hello Downfall! Welcome to NeuroTalk. I hope you will both take a look around and please make yourselves at home. Glad to have you here w/us at NT.

Hello downfall24, and welcome to NeuroTalk from me as well.

I am a young woman with secondary erythromyalgia that has spread over the course of 10 years. It is on my entire face: nose, mouth, eyes, ears, spine area and is spreading quickly to my hands and feet through my entire body. It is very painful and there are constant battles. It's a funny thing, but none of the doctors know anything about this disease. Turns out I often find myself fighting with them to help me. It's a frustrating position to be sick and have others close to you and professionals in the medical industry disbelieve your condition. Has anyone else had this experience? And, how do you deal with it? I am trying to prevent my erythromyalgia from spreading further and it is complicated with another disease that works in tandem, but when I cannot get medical help... it leaves me stranded. The lack of compassion and empathy have surprised me the most. Thanks~