I am a 35 year-old mother and wife suffering from FMS for 2 years. Not only am I suffering, but my children, and especially my husband. In June 2001, we were given our "LIFE SENTENCE". I had been sick for awhile and even hospitalized, but Dr.'s did not know what was wrong. I was diagnosed by a specialist. Thankfully, I didn't have to see several before they came to this diagnosis.

Of course I am on several medications like others, but without much luck. My husband and I are attending a FMS conference in Florida in May 2002, hoping to get some answers. It is horrible knowing that I have to live with this for the rest of my life.

Not only has it affected my life, but everyone's from my parents, to my children. My husband most days has to work all day, come home and fix supper, do laundry, clean the house and get the things ready for the kids for school the next day. Thank heavens he is understandable and very supportive and has been through everything with me from the very beginning. I don't know where I would be today if not for all of the support I receive. I would not want to try to deal with this by myself!!

FMS is different for everyone. I don't know what my future is, except that I have to struggle through the bad days to be able to have good days. Even if I have only 1 to 2 good days a week, it is better because of having support and understanding from friends and family.

Shelli Wood

My introduction to Fibromyalgia came after six months of illness, bronchitis, sinusitis, and pneumonia. Four weeks after the pneumonia should have been cleared up; I went to my doctor because I still ached, the same kind of ache I had suffered with the past six months. After a couple of visits, the doctor told me he thought I had Fibromyalgia. What? I had never heard of it. But I could sure tell I didn't like it.

I talked to my family, and they didn't know anything about it, either. I spent countless hours on the computer searching for information, and my husband brought books from the library. Then we had a rudimentary knowledge of Fibromyalgia.

One Saturday, my mother was visiting, and such pain came into my arm that I cried. We put a heating pad on it, which helped, but I couldn't move because the pain was so intense. My husband got in touch with my doctor, who gave me a prescription for Neurontin. We got that filled right away and a couple of hours after I took it, the pain was better.

Now I take Neurontin every day of my life. I know it dulls the pain, but I still have pain--pain in my shoulders, neck, and hands. And it changes. Today shoulders, tomorrow legs.

I went to a Rheumatologist who confirmed the diagnosis for my insurance company. Before they would pay any money, I had to travel and hour and 1/2 to their doctor and their functional (word?) where I had to squeeze things and hold things and walk up stairs and all sorts of things. That wasn't very pleasant, but I sure wasn't prepared for the doctor. He was a GP, and it was obvious to me that he didn't know anything about Fibro. Word to the wise: always take someone into the doctor's office with you. Why? Because this guy read my medical information, then looked at me and said, "You say you're in pain. I can't see your pain!" I'm afraid this kind of attitude is what many Fibro patients have dealt with, and it's horrible.

When my doctor first talked to me about Fibro, he said that it might last two years. Since then I realized that a lot of people have it for 10 or 20 years. I would like to work again. I think I have a lot to give. But I can't drive, can't sit for long, and have no comprehension any more. It’s very depressing (oh, yes, I'm depressed too). I'm lucky because my husband, mother, and sister have been wonderful through all this.

My darling husband, who vacuums the rugs and cooks dinner. He makes it possible for me to keep my chin up, for the most part.

Thanks,
Pat

… I am just sick and tired of being sick and tired. The fatigue for me has became unbearable. Most days, I am not dressed until 2 or 3 in the afternoon. Some days I get my shower but my hair does not get fixed. I can't help it and I am not pulling out of this. This has been many months of coming. I am in a flare that has lasted for the past 6 months and each week I get worse. However, this is being posted as a word of encouragement to others of you out there that may be fighting with our ridiculous government and trying to get your disability benefits. I have fought my battle with them for almost 5 years now. It's been long, it's been hard but I never gave up. I appealed, and appealed, and appealed. Once I got past my denial, and faced the fact that I could not work even though I wanted to, I applied for disability. After, first application I never quit. (I waited to apply) until I knew in my heart that I needed and deserved it (then), I never gave up. I am encouraging the rest of you to do the same. My case went as far as the Supreme Court, where they reprimanded it back to the ALJ judge once again. After that reprimand it still took almost a year for my next day in court. However, as of March 20, 2002 after so many years of not being able to work, I finally won.........yes......... I WON!!!!! ( I can't hardly type this as I cry).....Yet, his is hard on me. I want to WORK, I want MY LIFE BACK. I DON'T WANT TO BE DISABLED GETTING CHARITY. Needless to say, we don't always get what we WANT in life.

I do have a precious 5 yr old little boy, that does not get any child support, so this was his means of getting by in this world, so I must not let this get to me too bad, I had to do what I had to do in the name of my child. I am 28 now, at the age of 14 I was diagnosed with chronic fatigue syndrome and fibromyalgia. So I have now lived half of my life this way, but I can still remember clearly the young half. I feel like I was robbed of my younger days as now I sit most of the time feeling as if my body is 80 instead of 28. I have the long list of multiple other symptoms that go along with this, you know, chronic migraines that leave me useless, irritable bowel syndrome, endometriosis, thyroid disorder, depression and anxiety

Up until this last year I was a fighter, I fought this and won. … I liked being online and being a part of groups and posting and cheering others along the way and picking them up when they fell. This time I fell, I finally feel that the (disease) has won. …. I tried my best to keep my chin up, I tried my best to fight, I tried my best to help others all around. As of now those days are gone. It's all I can do to hold myself up and I am sinking at a great rate of speed.

…The pain has become so bad in my lower back and shoulders and neck that I can no longer sit at the computer for very long at a time. You know that real bad burning feeling you get in the muscles when they are exhausted from pain, well I get it after about 20 minutes of sitting here these days. … I have tried every single possible avenue of help that there is out there. I do have a therapist depression and anxiety, ... I have a rheumatologist where I get about 30 trigger point injections every six weeks that roll around. I have my family doc. I am in physical therapy, I have tried homeopathic remedies, I am currently on 13 prescription drugs per day, yes I feel like a walking pill factory, … doctors I have are afraid to give me any narcotic pain meds in fear of addiction, so they just fill me up with this crap I call candy that does not help.

The pain started when I was a teenager. Every doctor I saw had a different diagnosis. I went through so many treatments and medications. We even put a 2 inch thick piece of wood under my mattress, actually it was the old cellar door. I never found relief. I would go to the doctor and get pain medicine because it helped me to function normally everyday. I could go to work and keep moving. Everyone thought I made all this up so I could get pain pills. No one seemed to understand that the pain I was having was so unbearable and exhausting and I needed to relieve it. That was 34 years ago. I am 50 now and was diagnosed with Fibromyalgia 2 years ago. I was reading a magazine and the article title was "I HURT ALL OVER". I said out loud to myself, "I SAY THAT ALL THE TIME" so I read the article and could not believe what I read. Finally there was a name for what I suffered with and I felt relieved.

Well, The pain in my wrist came back again, (Carpal Tunnel Syndrome). It was very bad. I was sent to a Neurologist and the tests were negative. Eventually it subsided, but would return every now and then. My next episode was when I tried to exercise on a bike that you have to pull the handles towards you as you peddle. I ended up at my family doctor who was pretty sure I had rotator cuff. I was sent to another specialist who took x-rays and found nothing. I was in very bad pain. All the time thinking I probably have Fibromyalgia, I never mentioned it to the doctors. When I went to a rheumatologist and was tested for arthritis and all tests were negative, that's when I was told I had Fibro. You see, I call Fibromyalgia the "Fibber's Disease" because it mimics all kinds of syndromes and diseases and can be very dangerous if your doctor starts telling you it's the Fibro, because you never know for sure until the tests are run. Very expensive too! The worst of it all is there is no cure and it won't kill you, so you suffer!

When I have a "Flair", that's when every part of your body feels like the worst flu you ever experienced, and then some, I have stayed in bed and slept through 3 days, only to awake and crawl to the bathroom, and maybe get some fluid. I don't eat, I don't take my medication, I don't even smoke a cigarette, I lose days of my life, and I really hate that. Finally by the 3rd day I manage to get a shower and get a ride to the emergency room for a shot. After the shot I am good as new, but always in some degree of pain.

I had to quit my job because I couldn't be there every day. I had people at that job think I was making it all up because on the outside I appear healthy. Some even laughed if I mentioned it, out of sheer ignorance. I now have a part time job with the most flexible hours you can get. I go when I feel good, and I stay home when I don't.

I know I'll never have a full time job that you have to punch the clock. I'd never get through an 8 hour day anyway. A lot of the people at our support group are on disability, and I've thought about it, but if I can get 2 flexible part time jobs I think I'll be able to handle it. I don't want to give up, I'm too young!

There are times that doctors have been so rude to me because some of them think it's not real, and people who don't have it don't understand. If it were possible to trade places for a week with one of those doctors or the ones that are ignorant I'd do it in a minute. Then I am sure that at the end of the week they would be so very happy to have there healthy bodies back and would understand what Fibromyalgia is! We need to find a CURE!!!

Debbie Flamish

I look at the fact that I am now 50+ years old (and) for 10 years; I have been robbed of my life. I am a TYPE A personality and a perfectionist. Before this dreadful disease hit me, I could hike, bike, camp, go to college (I went back late to try to finish my master's degree in Psychology to work with abused children since I had been abused as a child). There was nothing that I wouldn't try because I had endless energy. In fact, my ex-husband said that I never could sit down.

When this hit me, I was in such tremendous pain, that I could no longer think, sleep, organize my thoughts, or function properly in any way. Year by year, this has gotten worse. I can't sit, stand, lay down or do anything else for more than a few minutes because of the excruciating pain. Many times, I have prayed that God would not let me wake up in the morning. Why? Because, I may have 30 or 40 years left to live and I don't know if I can stand it. Right now, they have me on time-released morphine; Percodan, soma and Ambien which miraculously lets me work about four to six hours a day. But, that is not enough to pay my bills.

I am divorced --left an abusive husband. The idea that I will be a useless person for the rest of my life just kills me. I don't want to be on disability-I want to work and could -if they would find a cure!!!! We need research money. Think of what it costs the government to pay for all the disability involved. And, I can't do anything with my children anymore. We used to go on trips all the time- that's over. They are grown. I have lost half of my life because no one will commit to research this disease. We aren't important without celebrities to champion our cause. These are my thoughts. I will wind up living off the government for 30+ years or blow my brains out because of the pain.

Thanks, Pat B.
Grand Junction, Colorado