[ashwest]

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.

[Kitty]

Hi ashwest and welcome to NeuroTalk! I'm sorry for the pain you're suffering and hope this website can offer you some help. There have been a few people who have joined who have this condition. Here is the link to that thread in case you are interested:

http://neurotalk.psychcentral.com/sh...ad.php?t=20031

You might also look in the RSD forum. Here is that link:

http://neurotalk.psychcentral.com/forum21.html

[tamiloo]

Wishing you a big welcome to Neuro Talk!!

[ali12]

Hello and Welcome to Neurotalk - you'll meet many great and wonderfully supportive people here!!

I am so sorry to hear about everything that you have and are currently going through

If you need anything, please don't hesitate to ask - I am more than happy to help you in any way I possibly can!

Thanks and i'm looking forward to seeing you around the forum soon.

Take care,
Alison

[AfterMyNap]

Hi, Ashwest! Welcome to NeuroTalk!

We had a few new members lately who also suffer with erythromyalgia. You may want to try using the search engine located in the toolbar near the top of every page.

Join right in and let us know if we can assist you in any way.

[ashwest]

Thanks everyone for your support and tips on how to navigate my way through the site. I am looking forward to connecting with many wonderful people. I am also hopeful just by your responses and suggestions that I will be able to connect with someone with the same condition as myself. Thanks again. It is so nice to know that there are caring, thoughtful, good people out there. Look forward to talking to you again.

[ebanny]

Two years ago my right knee swelled up really bad but eventually some of the swelling subsided. My knee pain persisted and still does bother me. Eventually I had reciprocating pain in my left knee. This included swelling, redness and sometimes burning sensations. In May of 2007 I did have my right knee scoped for a frayed meniscus. But even to this day my knees will intermittently swell and turn hot and red throughout the day, particularly with weight bearing. My feet have also been turning hot and red after being on my feet for a duration of probably >5 minutes. My feet also have sharp and sometimes pulsating pain. The heat, stress, activity and sometimes foods will trigger flareups. I've had multiple tests for rheumatism, Nerve tests and everything is negative. Just wondering if these symptoms sound similar to yours? I'm just tired of dealing with the pain and want to get back to normal exercise and work routines. I know it could always be worse, but I'm just having a really difficult time coping with this on a daily basis. Thanks for listening.

-Eric

Originally Posted by ashwest

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.

[FranksAngel]

hello Eric and welcome to Neurotalk ... below is a link to our chronic pain forum where you should find some answers to you current situation ... check out the other forums too and jump in where you feel comfortable ... i hope this link helps ... http://neurotalk.psychcentral.com/forum10.html

[Bannet]

Hi and Welcome to NeuroTalk!

[dorrie]

Welcome to Neurotalk!!!