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.

hi im kc my mother has had erythromialgia all her life she is 42 now and just got diagnosed 2and a half years ago one thing i do know is that it is a nerve disease my moms doctor told her it is an overreaction to the nerves which causes them to make the skin red and tingly which i know it is an under statement one thing i do rec mend is print out information about the disease and have your daughter carry it with her just in case it flares up and she doesn't know how to explain it my mother has gone to the hospital with it really bad and the doctors wont believe her some times so im afraid when she goes to the ER alone and people think she s crazy i do know how severe this can be in and i do under stand what your going through and i am only a teenager i do know i was lucky to not get it because it comes from a hereditary gene carried by the parents either of them and the children can get it or not that i do know is not completely known how that happens but i do wish you luck and your daughter as well if you have questions just awnser back
kc

Hello bell and welcome to NeuroTalk. Sorry to hear about your daughter and her pain. Please make yourself at home here and I'm glad you found us.

[SIZE=3]Hello,

My name is Karen Gray My Son was diagnosed with Erythromyalgia 20 years ago....he was 7 years old. Our experience was very similar to yours. We were sent to Children's hospital in Birmingham Alabama. They were bringing in doctors by the droves....and were telling my husband and me that our son had mental problems and he was having a psychosomatic disorder as well. I begged for a Neurologist and he came in and had read an article a few weeks earlier on Erythromyalgia. I told him that the only relief we were getting was for Kenny to soak in hands and feet in cold ice water. He came back a few hours later with the article and 3 other doctors. They knew it was Erythromyalgia but did not know how to treat it. After several bizarre tests and experimental drugs my husband and I were begging our family doctor to get us out of the hospital so that I could find treatment for our son. It was a process but we finally did get released. We found a doctor in Tuscaloosa, Alabama and immediately told me that all Kenny needed was a steroid. We put him on steroids and in two months he was completely back to normal.
If you want to talk to me personally please send me a number where you can reached to and I will be happy to talk to you. I will certainly keep your daughter in my prayers. Karen Gray

Hello everyone, I am a 31 year old woman who has dealt with erythromyalgia for 7 years now. It is so encouraging for me to finally find some other people who are suffering from the same disorder. Although I do not want anyone to suffer from the painful symptoms from this disease. There can be great feeling of being alone when you are battling such a rare disorder, with not a lot of answers or treatment options. I am eager to find support on this site, and also give encouragement to others who are suffering. I can tell you that I have been seen by many different specialists before I was seen and diagnosed at the Mayo Clinic in Rochester. It was very relieving to finally be diagnosed, but I have not had any luck in finding an effective treatment for the pain. I have tried several different pain meds ,and anti-depressants that also treat pain, along with some anti-seizure meds also. I have suffered from the extreme side effects of these medications and struggled to function in my every day routine. So, with the help of my physicians I was slowly taken of these meds, and I am now starting from scratch to try and find some relief from the pain. It's continues to be a very painful and difficult journey to find some relief and get back to life as normal as possible. I am struggling also with the long distance from the mayo clinic to receive proper treatment from physicians that have more experience with this disorder. I am located in Indiana and if anyone has any information on a physician that sub-specializes or has treatment knowledge of this disorder in Indiana please let me know. My husband, daughter and I have suffered greatly financially trying to continue to seek care from the Mayo Clinic and the travel included in that. Thank for listening and caring. God Bless all of you. If anybody has questions for me of my knowledge that I have gained through my own experience and treatments please feel free to contact me. I would be happy to be as supportive as I can.

Hi,
I'm new to this forum, but I've been searching the Internet for information on erythromyalgia and found nothing useful anywhere else. I'm encouraged to talk to other people with experience of this disorder. Thanks all of you who have already posted such useful information!
I am fortunate in that my condition is not nearly as bad as others. I can usually manage with cool water (cold damages the tissues, I'm told) and elevation, although that isn't always possible. My joints are also very stiff in the morning though (even if the air conditioning has been on), and when it's hot. It has been getting worse as I've gotten older (I'm 46 now).
My bigger issue is that I also have perniosis (chillblains), which got misdiagnosed for a while as Reynaud's. It's the opposite of erythromyalgia, because it's vasoconstriction in response to cold rather than vasodilation in response to heat. I get bad, painful swelling on my hands and feet that remain for weeks. That's bad enough, but because in the winter buildings are overheated, the erythromyalgia gets triggered so I have both conditions flaring up at once. That's crippling and I can't use my hands and have trouble walking when it happens.
So...I'm eager to hear more about anyone getting relief from erythromyalgia with biofeedback. I've already tried conventional medicine, Chinese herbs, and homeopathy, none of which particularly helped.
Thanks again!
Linda

One of my young students explained that she was late this morning because she was seeing her Mayo Clinic physician for her erythromyalgia. She then sat and described for me what she has gone through in the past 5 years to reach this diagnosis and it sure reminded me of your narrative on your daughter. If you would like, I can share this information and maybe she can offer some help. I teach human disease and had not previously known of anyone with this problem.

Yvonne

Wow! Theres a few new members that have posted on this forum.

I would like to welcome you all to NeuroTalk

welcome one and all to NeuroTalk ... you will find lots of friendly, supportive, helpful people here ... and ....