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Old 08-20-2008, 08:49 PM
ashwest ashwest is offline
New Member
 
Join Date: Aug 2008
Location: Indiana
Posts: 3
15 yr Member
ashwest ashwest is offline
New Member
 
Join Date: Aug 2008
Location: Indiana
Posts: 3
15 yr Member
Default Hello everyone...

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.
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