Erythromyalgia
 

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:hug:

Erythromelalgia--
 

--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.

I also have a teen daughter with EM
 

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!

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

Help with erythromyalgia
 

I hope I can be of some help to you and your daughter. My name is Tiffany and i have suffered all my life from this disorder. HOWEVER i WAS ONLY DIAGNOSED WHEN i TURNED 19 It has been difficult for the doctors to diagnose as I also have raynoids sndrome which shows an opposite affect on the digits and legs turning them white followed by red and blue. I am now 43 years old and it has taken a very long time to get any help at all. I spent a number of years visiting the Royal Adelaide Hospitals pain clinic in South Australia and got absolutely nowhere!
Now for some good news without the medication I am on I literally can not walk because of the pain. But my wonderful g.p has made it his lifes challenge to help. I now take mobilis (pyroxicam) 10 mg. I weigh 70 kilos. and Amlodoipine 5 mg per day. You need to be aware that the mobilis is an anti inflammatory used for arthritis which is what this rare condition is and that the amlodipine is commonly used with high blood pressure.

Please talk to your doctors and never give up. The pain your daughter is feeling is very real. Strangely enough the only thing that reduces the pain instantly other than large doses of pain killers is a very hot bath. I am not sure if this is because I also have raynoids syndrome? However raynoids does not produce the burning, cramping , knifing pain of erythermyalgia.

I sometimes wrap my legs in hot towels so that i can watch t.v instead of turning into a very bored prune in the tub. I have recently found mild doses of fennergen or another sleeping tablet helps me get a good night sleep. When I was younger I used to take Valerian a natural sleep enhancer and that was better than taking panadeine forte just to sleep. The cramping pains that I now get right up my legs and into my hip joints are worse when I first lay down usually the first 2-3 hours. So a little pain relief then or some form of relaxant may help. My feet don't seem to burn on the medication only ache on the souls if I have been on them for awhile.

I would suggest that in the future your daughter choose a career path that is sitting down and walking around a little!!!!!!!! Unfortunately that is not an option for me as sitting up straight for more than 20 minutes completely blocks of the arteries in my groin and I am unable to stand. I currently work 32 hours a week in a busy cafe' but believe me when I tell you I am in a lot of pain. When I ran my own business I was able to sit until I felt my feet start to go numb and then get up and do something else. This is the ideal situation and you may be able to speak with her teacher about trying it.

I wish I had even more good news but if I wasn't working and doing general house work things wouldn't be too bad. When I was about thirty I couldn't hardly walk definitely couldn't work and used a walker to take some of the strain. I was a very thin person then and still suffered. So these drugs may not be the be all and end all but they have given me my life back.

Just want to finish with the affect of stress on the condition which you seem to already be aware of. It is hard not to get down when you live with chronic pain and I would encourage your daughter to speak to others living with pain, too lift her spirits. She is not alone.

Kind regards Tiffany.

Hi Tiffany and WELCOME!!!!!!!!!!!!!!!!!


Please feel free to roam around the boards and jump in anywhere---the water's GREAT!!!!


If you have any questions of need any help please let us know...


Hope to see you around the boards!!
:)
Abbie

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.