Dear Gentle Reader:

I've had fibromyalgia, fibro for short, for about 10 years now. It was likely triggered by a whiplash injury I received in a near-accident. About a week later I was laid off and I've never been pain-free enough to get back to full time, or for that matter even part time, work.

However, I did manage to go back to school, I needed 2 more years to achieve a B.A. degree. Fortunately I made friends quickly, because I needed help. My classes at first were only a few nights a week, but it was painful to walk from the nearest handicapped parking, past 3 or 4 buildings to where our classes were held. Some nights a friend would carry my books for me. Often one or more persons waited for me to catch up. Other times I was left to make the trek alone.

In my Sr. year I had to drive all the way to the next major city to attend day classes. There had been a problem with getting my chosen degree vs. the Liberal Studies degree that was offered at the local auxiliary campus. I slept on any available couch between classes because I was always so exhausted. I needed special dispensation because I couldn't always complete my assignments on time. By this time I was having trouble with falling and had begun walking with a cane. I wasn't quite 40 yet! I normally used the elevator to get to my classes, which were all upstairs, but it was old and broke down a lot. Then I would have to struggle up the stairs, with other students shoving past me, and arrive to class in a world of hurt. Fortunately there were new friends here too, who did their best to be available to carry my books and make sure I got to class okay.

Although a roommate helped a lot with bills, money was still very tight. Many times we had to rush money to a payment center to avoid losing utilities. We often had to decide which bills to pay and which to let ride for another month. The more stress about money, the more physical pain and often an increase in my asthma too. A simple hug could be painful. If someone bumped into me, I was in instant agony. We finally moved to the High Desert in CA, where rent was much cheaper. We lived in a drafty trailer and I had to use Food Stamps to get by. I did some simple work at home, occasionally editing letters and business documents for friends, a few tutoring jobs. I'd become engaged, but my being in constant pain and unable to handle his co-dependency on top of my own problems eventually ended our relationship. God bless the friends I currently live with, they are here for the long run.

Everyday when I wake up, I am in pain. My normal pain level is usually somewhere around a seven or an eight; with ten being the absolute worst pain you’ve ever had, just unendurable. All day I try to find ways to occupy my mind, so I don't think about hurting. I sleep a lot, sometimes up to 15 hours; fatigue is one of the side effects of fibro. Our bodies don't make enough serotonin, so we have a hard time reaching Stage Four sleep, the deep sleep that helps the body heal itself. Consequently we are usually tired and have achy muscles, as well as pains in 'tender points and trigger points'. A trigger point hurts at the site, but also causes pain in a second spot, whereas the tender points only hurt in one place. I now take melatonin, which I have recently learned the body uses to make serotonin.

I take Elavil, a medication for depression, but I take it for nerve pain and to help with sleep. Although my Dr. has raised my dosage a number of times, I have been diagnosed with depression. I also take muscle relaxants because I have muscle spasms, primarily in my back and ribcage areas. The muscle relaxant doesn't eliminate the spasms, but it usually keeps them to a minimum. Both upper arms consistently ache now, that started about a year ago and has continued. I can't carry anything heavy and must be careful how I reach for things, or they may spasm as well. Turns out I have torn rotator cuff in both arms. When I just can’t handle it, I take Darvocet, Norco 5 (I’ve been told it’s the same as Vicodin) or Tramadol. I take one of the 2 last ones if I am going to bed, as they usually make me sleepy. I can only take one dose every three days of any of the latter two, or I get sick to my stomach. I am able to tolerate Darvocet fairly well, although I try not to take any pills at all if I can get by without them. I don’t want to get to the point where I have to take more and more because my body has gotten used to the current dose. So I guess I may have more pain then some, but I feel that’s worth it. I tried Lyrica, which is the first drug the FDA ever approved for fibromyalgia. It turns out that, although it did help with the nerve pain, the Elavil was apparently also masking some of the arthritis pain (see next paragraph), so I went back to the one that covered more types of pain. Then too, there is the agony and potential embarrassment of IBS. Irritable bowel syndrome plagues a lot of fibro patients, why, we don’t know yet. I have had cramps so severe that I screamed in pain. My body usually alternates between constipation and diarrhea.

It's hard for me to get around. I no longer drive myself unless I have to and then only in about a 3-mile radius around home. I do have handicap parking, but that is tailored to people in wheelchairs, so sometimes it's farther away from the door than the regular parking. When available, I use the electric carts in stores. Sometimes I get nasty looks because nothing looks wrong with me, but fibromyalgia is an invisible disease. So far there are really no diagnostic tests that can be used to verify that you have it. You have to add up the various symptoms, make sure they are not caused by other illnesses and see if they equal fibro; that's why it's called a syndrome. I do have other medical problems, the worst of which are the aforementioned osteoarthritis, diabetes and asthma. I also have a cyst that is displacing the nerve root at S1, so I have constant sciatic pain as well. The consulting Dr. declined to recommend surgery or aspiration for the cyst, he decided I have so much pain, it wouldn't matter anyway. I sometimes wish he could spend one day in my body. The osteoarthritis pain is the worst in my neck and in my lower back. Any pain from other sources, like the osteoarthritis, is magnified as well. It's hard to exercise when you are in constant pain and have a lot of trouble breathing, so the diabetes is primarily treated with medications, both oral meds and injections of insulin. The asthma is bad enough that at least once a day I cough so hard I see gray spots and feel as if I'm going to pass out.

To put it bluntly, I can't sit or stand for any significant length of time without pain. The most comfortable position, although not painless, is lying down. I was a very independent person, but no more. I struggle to get through each day and am limited in my activities. Thankfully I have a good support system of friends and a loving family. Finally, in April of 2007, I was approved for SSI. I applied in June of 2000; my payments didn’t even start until September of 2007!

Should you have any questions, please feel free to contact me.