New Member Introductions

Replies to This Discussion

Permalink Reply by Diana Parker on March 16, 2010 at 10:29pm

Good idea

• ▶ Reply

ModeratorPermalink Reply by Ben Munoz on March 18, 2010 at 10:26am

Welcome everybody. Diane, Eric, and I created this community to help connect patients living with fibromyalgia. I am a stroke survivor and created http://www.avmsurvivors.org to connect with others like me during my recovery from surgery. It was my lifeline during recovery and I want to make sure that everyone with rare medical conditions like fibro knows they are not alone.

Ben
http://www.bensfriends.org

• ▶ Reply

Permalink Reply by Billy Staggs on May 11, 2010 at 5:20am

Hi, my name is Billy, I have been living with Fibro since 23 years old, I'm now 30, it has been a battle... Anxiety being my sure symptom. I'm on medicine, but have to up it...occasionally, I feel alone in this, I have a friend who also has Fibro. I'm not well at all some days. I have nerve burning, it's getting to feel like I just feel alone in this struggle.
TY, Billy

• ▶ Reply

Permalink Reply by Linda Cannon on May 14, 2010 at 8:35am

Hello, I am 63 almost next month, I have been battling this for 6 years that I have known what it was and before a long time. i live in Texas and never knew there was so many people. I took Lyrica first .I was extermly allergic to it ,passed out twice fell all the time, So then they put me on Cybalta it helped but wasn't strong enough for the depression. Now I am taking old timey Mobic and Prozac ,I am seeing some relielf except for the flare ups. I had to quit two job latley that involved a lot of walking and standing.So now I am going to try to get by I have no insurance so I don't know how I will get my meds

• ▶ Reply

Permalink Reply by Dori Royer on July 31, 2010 at 6:43am

I live in Elkhart,In. I have been married for 16 years and together we have 6 children and 12 grandchildren. I was diagnosed in 97 with fibromyalgia. I left my job two years ago to stay at home and take care of my autistic granddaughter. We have always controlled my fibro with meds but lately the pain has began to become unbearable. I am thinking I need to be reevaluated by the dr. for different meds. About the only hobby left that I can do is the computer so I am on here all the time.

• ▶ Reply

Permalink Reply by Lisa Duffy on July 31, 2010 at 8:49pm

Hi Everyone, I'm Lisa and have had CF & FMS for over 10 years. I go through periods where I feel like I have my symptoms and therefore my life under control but it never lasts very long. My pain is constant, 24/7, so I've been on pretty much every narcotic on the market. On my best day I can leave the house for an errand or two, on the other days I just lie in bed and pray for the day to end. You all know how totally encompassing this illness tends to be. It turns us all in to narcissist to a certain extent. At least for me, my pain and discomfort is always on my mind. I try to exercise when possible and this does seem to help. I use DVD movies to distract me and to make the time pass more quickly. I just wish I had some predictability in my life. I’m sure many of you feel the same way. This illness can be maddening! Thanks for listening.

• ▶ Reply

Permalink Reply by Tori on July 31, 2010 at 9:08pm

Hi everyone,

I've already made a couple of posts, but since I'm new to this site I thought I'd stop by here and introduce myself.

My name is Tori, I'm a 52 year old married woman. No kids, but we have three 'kidletts' - two canine and one feline daughters. I live in Albuquerque, New Mexico.

I was dx with fibro in 2001. At that point I was desperate, very confused about what was happening to me, and had never heard of fibromyalgia. When the rheumatologist gave me the dx, I was so relieved to finally know that what was happening was REAL, and had a name. I probably had fibro for a good ten years before receiving the dx. All that time, the only thing I knew was that I was in a world of pain and fatigue, and I couldn't explain it all - to myself or anyone else.

In the years since being dx'd, I've tried a variety of medicines, including Lyrica and neurontin. I wasn't able to continue on those because, not only did they not relieve the pain, but I couldn't get past the side effects - severe dizziness and nausea. I've found the best way to deal with the condition is to get as much good sleep and rest as I can (as you all know, not an easy thing to accomplish!), to pace myself and not over-do, try to keep my diet decent, and use the word NO when I need to.

My pain management doctors don't 'believe' in fibro - but they're very clear about where I stand with that baloney. I don't rely on them to help out much with the fibro, and that's okay, because ultimately I am responsible and accountable for doing what I need to and can do to take care of myself in all areas of pain and my medical conditions.

Anyone else have doctors who aren't on board with fibro? Sheesh, in this day and age I still sometimes find it hard to believe there are still doctors who deny fibro or aren't completely on board with it.

I'm looking forward to getting to know some of the other members, and please know, everyone, I'm here to offer support and friendship to you all.

• ▶ Reply

ModeratorPermalink Reply by Ben Munoz on August 1, 2010 at 4:11pm

Good to meet you, Dori, Lisa, and Tori. If there is anything I can do to make this community better, please send me a message.

• ▶ Reply

Permalink Reply by Ben Morrell on January 2, 2011 at 1:48pm

   Hi, my name is Ben.   I found this site from the Avm Network of Ben's Friends, that I am a member of.     I have been disabled now since the fall of 2009, with multiple symptoms.   I was diagnosed with fibromalgia in Feb. of this year.    I'm still learning how to live with it.   But, I do my best not to let it get to me.   

   I'm presently on dilaudid, 4 times a day for the pain and muscle relaxers twice a day.    Although the meds do help, it is still a chore to do the normal things some days.    I'm not sure what's worst, as many of you already know,... the pain ot the stiffness.

   Lets see.  What else?   Well: I live alone, I use to be very active until I got sick.   I have some brain damage that caused me to have fibromalgia.  I think thats it.

   

• ▶ Reply

Permalink Reply by Schanda on January 26, 2011 at 5:12pm

Hi,

My name is Schanda and I am an elementary vocal music teacher near St. Louis, MO.  Recently, I found out I have fibromyalgia.  Now, I'm still trying to process all the the new information about this illness.  On one hand, it was good to finally know that there is something 'wrong' with me and that it's not all in my head.  On the other hand, the task of managing my illness seems so daunting.  I already have a hard time dealing with my Bipolar and anxiety disorders.  As a music teacher, I've always been very active and high-energy.  Now, even my students see my pain a fatigue.  Doing everything is getting so hard.  I hope to find my way through.

 

Thanks for reading!

• ▶ Reply

Permalink Reply by Juanita Morris on February 14, 2011 at 9:09am

Hello, I'm Juanita, Seems like I've had Fibro my whole life. I was just diagnosed a couple of years or so. I've been on disability for eleven months now. I was a Respiratory Therapist and loved my job but since its a very, very active job I finally had to quit when I also got Atypical Trigeminal Neuralgia. That is a nerve condition affecting the nerves that feed the face (there is a group on this site) I had surgery on my TN, which didn't go so well in 2008. After that my Fibro got so much worse. The two are hard to deal with but right now I am doing better, of course as you know it could change tomorrow. I have found good neuro and pain Dr's and at the present have it somewhat under control...YEAH!!! My husband and three daughters are very understanding but my grandchildren haven't grasp it yet, they think Nanna can keep up with them. Its hard to tell them no, but I know they are to young to understand why I hurt and am so tired. I would like to tell everyone with Fibro to try Effexor!!! It is an antidepressant that is also used for Fibro. I started on it three months ago and it has helped me so much. If you haven't tried it see if your Doc. will let you. I'm so happy I found this site. Just writing all this makes me feel better!!! 

HAPPY VALENTINES DAY EVERYONE, JUANITA

 

 

 

 

 

 

 

 

 

• ▶ Reply

Permalink Reply by Gabriella on April 24, 2011 at 11:21pm

Hello everybody,

My name is Gabriella, but my friends call me Gabby. Please refer me to as that - I honestly hate being called Gabriella!
I just got officially diagnosed a few days ago with fibromyalgia, but I'd known for a long time before that I had it. It came on when I was 18 years old, a year after I had been hit by a car. I'd tried all the treatments for my back injury, but nothing seemed to help the pain.
After almost three years of nothing working, I went to an orthopedic doctor, and he put me on Savella. He was very understanding and knew what he was talking about - it was a nice change from doctors who didn't know what to do with me.
At the moment, I'm trying a dietary change. I did some research on foods that can make fibromyalgia worse - and so far, just by staying away from those foods, I'm in about 80 percent less pain.
I'm lucky, in a way, that I have a mother who understands. She has chronic fatigue syndrome - so we both have our "down" days, and we understand the reason why.

As for non-medical stuff, I live in Las Vegas, Nevada. I'm 20 years old as of March 6th. I'm an artist - I do all sorts of things, such as drawing and painting, but poetry and story writing are my true passions. I have two little dogs that are like my children. One is a black half pomeranian, half chuihaha named Chewey. The other is a full pomeranian named Simba.
I'm working on my GED right now, and then I'm going to go to college at Full Sail University in Winter Park, Florida to take classes in video game design.
I dream of one day being a great artist - and who knows, maybe it'll happen. :]

• ▶ Reply

• ‹ Previous
• 1
• 2
• 3
• …
• 5
• Next ›
• Page