Hi Melanie,

My name is Vi (Violet), I'm 44, and the mother of two wonderful children son 22 and daughter 18. My brother found your web page and sent it to me so I thought I would introduce myself to you and tell you about my fibro.

I have been suffering from fibro since 1997. As I read in others posts it does feel like a terrible flu but also I feel as if someone took a 2 by 4 and busted it across my legs or like running into something extremely hard. I also have a horrible burning in my arms and legs. I suffer from depression and my sleep has been horrible since I have had these symptoms. Of course the stress and pain of this illness doesn't help the sleeping habits at all. It's hard to even get out of bed on some days and others is okay.

I take a lot of pain medications as well as a lot of other medication and vitamins just to try and take the edge off so that I can cope from day to day. I pray for good days and am so thankful when I get one. I truly wish the doctors and researchers would put another name to this illness for all our sakes. Seeings how a lot of doctors and people don't take it seriously. Like arthritis extentsion or something that helps the public know it is truly a huge problem for many people and it really takes a tole on our lives on a daily basis. It's something we can't ignore because the pain is always there.

We have to educate everyone on this illness because I have heard so many say their family and friends don't understand it nor do they want to believe it. I hope that what your doing by reaching others and hearing their stories will get through to the government to help more with our research. If for one day they could feel my pain I know there would be money for research.

I enjoyed, if I can say that, the post that said:
owwwwwwwwwwwwwwwwwwwwwwww
zzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

That is very succinct and covers it all. I am 54 and it fills as if every muscle in my body is being squeezed by a vise.( a tool with two jaws that close by a lever or screw that is used to hold an object immobile so that it can be worked on) everyday, 24/7, 1440 minutes per day or 525,600 min/year, etc.

I've always been a morning person. I still am in my mind. But, getting out of bed, I feel like my muscles never relaxed (even with a muscle relaxant - which if I didn't take, I'd be up all night with cramping).

Add that to Osteoarthritis (bones) and I just could go hopping up and down! Yeh, right, In my dreams! :-)

Well, having said all that, I am so grateful for my walk with the Lord (literally, spiritually) for 20 years, 6 months. Without Him, I don't know how I'd deal with it. (Then again, I probably do know and it wouldn't be pretty!)

Mrs. Pam Lamker
Angola, NY

Hello Melanie,

I signed the petition and Faith suggested I tell you my Fibro story. Well it probably sound like a lot of others. I feel I had it long before I was diagnosed. I had a lot of different areas of pain. I was born with a club foot. I suffered leg pains, migraines and severe back pain. I was told I wouldn't be able to walk by the time I was 30. Well I'm still walking but I had to have back surgery in 1992. They fused L4 and L5. My back pain was almost completely gone. Then about 5 years ago I started having more pain this time from my neck down to my feet. I tried everything to relive the pain. Where I was working kept changing insurances, so had trouble getting to see my family doctor. As you know with HMO's you have to go to certain doctors. Well in early 2000 my doctor finally finished testing me for everything that had the same symptoms. I was tested for lupus abnormal thyriod,rheumatoid arthritis. I was then sent to rheumatologist. He ran more tests. Then he told me I had FMS. Then he told me no cure, just take meds and try and get through each day.

I had a rough start in trying to accept what I had. Finding out what was wrong was a relief, but then being told learn to live with. That floored me. I had to explain to my husband what was going on with me and that there was no cure for it. He has had a rough time with it. He tries to make everything easier for me. He is remodeling our house and trying to make it more accessible for me. I had several traumas to the body. I fell into the bath tub, hitting my head and injured my neck. Then car accident, went to hospital on back board. Then fell and messed up my left knee, then had another car accident, reinjured my knee. After that the pain never went away. I never was pain free after all that.

I have not been pain free in years. I have IBS, I have attacks like gallbladder attacks, had ulcers ruled out, nothing wrong with gallbladder. I have to take meds for that along with pain meds, muscle relaxer meds to help me sleep. I am not as bad as a lot of them are. I still manage to work everyday. Somedays it's all I can do to get out of bed the pain is so bad. Well I have given you the general information about me. Oh Yeah I'm 49 yrs old. Hope this helps with the petition.

Sincerely
Evelyn Belinda

Hi I just read your page about fibromyalgia.

I was diagnosed with FMS TEN years ago. I have had good days and bad days, but one of the best days was the day a doctor told me there was a name for what was wrong with me. Fibrositis. I was thrilled. And felt crazy to feel that way. Just to know that I really wasn't crazy or a hypochondriac. No one in my family (husband and kids) still thought anything was wrong with me. Even though I went to bed at 6:30 in the evening. And one day recently my husband said to me, "your sister shampoos her carpets and she has breast cancer. There is nothing wrong with you and you can't even get the house cleaned up."

I have most of the symptoms you mention in your story. I am super sensitive to smells, lights, and medicines. Even epinephrine which is in most anesthetics, gives me an extreme reaction. I feel like I am having a panic attack. When I list this on the things I am sensitive to, most doctors, nurses, and anesthesiologists act like I am crazy. I had sore throats, and respiratory infections all my life. Leg pains were a common occurrence for me growing up. My legs would hurt so bad that I would rub them up and down the sheets trying to ease the pain. I have asthma, migraines, reflux disease, carpal tunnel problems in my hands, cannot remember anything I need to anymore. The fibro fog is a constant companion. So many times lately, I will be driving down a road I have been down a hundred times before, but I look around and I don't recognize where I am. I have mild hypertension, and I have already taken 5 different medicines, two of them triggered a very bad relapse of my fibromyalgia. The others, I had reactions to, which I cannot remember no matter how hard I try. Just a couple of days ago, a rheumatologist gave me Tylenol Arthritis. Thirty minutes after I took it I could hardly hold my eyes open. I called to tell her that is how I reacted to it. She had her receptionist call me back and tell me it was not the medicine. I called a pharmacist to ask him if anyone else had reported that reaction. He said it was not a listed reaction, but now he would believe his wife when she told him that Tylenol made her drowsy.

I went to this doctor trying to find someone to go to who would understand me and my symptoms. I am a military dependent and not many military doctors even believe fibromyalgia is real. I have had some of them tell me they did not think it was a real condition. I do not think I will go back to this rheumatologist, because if she discounts what I tell her is a reaction to medicine and I know that is what did it, then she will not listen to other things I have to tell her. OH WELL. The other reason I was going to her was so I would have a record of treatment in case I decide to try and get disability.

I have learned to manage my life, by limiting my activity, and keeping stress down whenever possible. Which is usually not possible. And when it does flare up, I only take a Motrin or aspirin rarely. Most doctors at our treatment facility try to give me anti-depressants, which make me sleepy......way longer than the normal reaction. (Like two days worth) I have lived with pain so long it is really a surprise if I wake up one day and say.........."Hey, I don't hurt anywhere, RIGHT NOW."

I was a military child care provider, I have a Child Development Associate's Credential. I loved my work, and I was the one that my supervisors depended on to be there when the regular lead care giver was out. I got perfect marks on my evaluations, except for the fact that my boss said she could not give me that score on dependability. Because of my migraines and fibromyalgia. I might be driving to work and it would hit and there was no way I could work that day. They painted our building with a latex paint and I got so sick and a migraine hit immediately. I was out of work for about 3 days because of it. I asked them to tell me if they were going to paint anymore so I could stay home, of course, they didn't tell me, so I walked into it and got sick again. Everyone called me a whiner and thought if no one told me they were painting I wouldn't notice.

I didn't intend to write all of this when I started. Just got carried away. It is 2:02 a.m and I cannot sleep. Insomnia is one of my other symptoms. If you wish to post this on any site, or use it to help spread the story of fibromyalgia, you have my permission. THANKS FOR A LOVELY WEB SITE. (Name withheld per authors request)

Dear Mel

I found your site while doing a search for Fibro on the web. I would like to share my story with you, for no other reason than the fact that you will understand what my family and friends can't. Feel free to put this up on your site.

In 1996 I was diagnosed with Fibromyalgia, Asthma, and Cytomegalovirus all at once. Most people don't even know what CMV is. It's like having a form of mono that flares up when ever it wants to. It kinda goes hand in hand with Fibro. I was only 16. I had been an active teen. I went roller skating every weekend, ice skating, water skiing, and I had fun roaming the mall and the neighborhood with my friends. By the time I was 17 I could hardly make it through my day at school. I lost a lot of my friends because I couldn't hang out with them anymore. Every time I stepped outside it seemed I would get sick. I was an insomniac, sometimes staying awake for 6 days straight. I lost contact with most of my friends because I would go home and sleep as soon as school was over. I almost didn't graduate because I missed 30 days of school. It was a nightmare. Somehow I managed to struggle through school and graduate.

After that, because I never had the energy to go anywhere or do anything, all my friends disappeared but one. She stayed with me because I was the only person who had ever befriended her in middle school and defended her in high school. I tried getting jobs. Every teen hopes to get a job, go to college, and get out on their own. I couldn't hold a job for more than 3 months. I would always get sick or injured. I'd get bronchitis and be sick for a month or a box would fall on me and I'd have a fractured wrist or dislocated shoulder..etc. So my parents told me to go to Greenville Tech. I went. It was awful!

At first, it was ok. But I just couldn't concentrate on my classes. I met Bryan there. That was back in Sept of 99. In Dec, I had quit school. In May of 00, Bryan and I were married. His parents were convinced I had AIDS because I was always so sick. I could barely go a week without being sick. Bryan stood up to his family and they kicked him out. We had to live with my parents. I'm 20 years old now. Bryan is the only one with a job. My only contact with people is through the internet now. Poor Bryan is an energetic boy with a sluggish wife. It's an effort for me to even wander through the mall for an hour. I was never given any kind of treatment, therapy, or information on Fibro. I learned what I know through the internet. The only thing my doctor could tell me is that I may be 20, but my severity of Fibro ranks with the 40 year olds.

Imagine being a 20yr old artist with fibro. It's like having arthritis..I can't paint anymore or sculpt. All I can do is computer generated graphics and web pages. I filed for disability and was turned down. I didn't know that I should appeal it, so my time limit ran out. Can I re-apply? I can't afford a lawyer to help me battle the system.

The hardest thing for me about fibromyalgia is that no one in my family understands. My mother has it, but hers isn't as bad as mine. She can still work, so she thinks I'm just being a wimp. My father believes that you can control every aspect of your own body, so he thinks I'm just lazy. My sister is in perfect health and thinks I'm worthless. And poor Bryan tries to understand, but sometimes the frustration of being the one who earns all the money for us to pay the bills with gets to be too much for him.

Meanwhile, I'm stuck with no one understanding what it's like to be so young and to have your whole life sucked out of you. It's embarassing to be talking to someone and not finish my sentences sometimes or to sometimes forget I was even talking. It's awful to wake up and not be able to get out of bed to be with my husband before he has to go to work. I'm on an anti-depressant, but that is all. My manic-depression is the only part of the Fibro that has been treated. I have to wonder if I will ever get back some tiny bit of my life and feel like a real person again..or if it is already too late.

I hope that your site gets noticed by the government and that they realize it is a real disease with real people suffering from it. I hope they will recognize it is debilitating and will make it easier for people with it to file for disability. Until then, the only support we have..is each other.

Yours truly Robyn L Carnahan