Fibromyalgia Experiences

Meanwhile, I'm exercising daily and still taking the smaller dose of amitryptaline, which seems to sometimes help and sometimes not. I'm still sore a lot, especially after significantly more exercise than usual (which makes sense, of course). I'm currently especially working on getting more and higher-quality sleep, as I feel that everything else in my body will be off-whack till I can regularly get that. It is still somewhat difficult, however, since I have had several sleep disorders for many years -- severe insomnia, bruxism (grinding your teeth), restless legs (some nights are worse than others; sometimes I wake up to find I've somehow kicked my covers to the upper right corner of my bed!), night terrors (again, some nights are worse than others), and chronic nightmares, and I also tend to wake up numerous times during the night. Still, I seem to be making progress; I often have less trouble going to sleep than I used to and wake up less often (or not at all!), and I have fewer nightmares than I used to have. From things that I have read, in books and pamphlets and on the net and so on, it appears that by the time I was diagnosed, I had a pretty severe case of fibro, with almost all the symptoms and related disorders (including some the doctor didn't officially diagnose me with, like IC). So I am working one day at a time at overcoming all of this. It's not easy, but hopefully it will be worth it.

I admit that there are times when I feel really frustrated. A couple of years before I was diagnosed, I was climbing large, steep hills in foreign countries in extremely hot temperatures, and now some days it hurts merely to walk. Admittedly, I was doing everything despite my sleep disorder, fibro, etc., but it feels like it has gotten so much worse, and it can be really discouraging. Still, I refuse to give up, and I am going to keep trying. My therapist thinks that I should join a fibro support group, which I am probably going to try next. I am also still looking for a specialist whose attitude I like more and who exhibits more knowledge on the intricacies of fibro. And I am reaching out to others with fibro, threaded to them by the common bond we share in this disease and its complexities and frustrations. Please feel free to email me.

update as of 10/98:

Wow, a lot has happened since I wrote this page. When I first wrote it, I was just learning to accept and understand my illnesses. Since then, I've done a lot of research and have seen other doctors. I was unhappy with the attitudes of all the ones I've seen. Last month I stumbled upon a related website that was hosted by a local server and wrote the webmaster asking for recommendations to good, cutting-edge-research local specialists. She replied that the doctor that started the website has a clinic in my city and that she is an excellent specialist. I called the number she gave and they proceeded to send me some informational material and a "new patient" packet. I filled out the packet and returned it, and have been waiting for them to call to schedule an appointment with me. (The accompanying letter said that the clinic is very in-demand and that the wait can be a while.) Judging by the materials they sent along and the way they presented their beliefs in the patient packet, I am very happy so far wit h their attitudes. Other doctors I have seen have not been at all up on the research and have had a very patient-blaming attitude; in the packet, however, they seemed very research-aware and even asked questions like, "Have you been told this is all in your head?" and "Have you ever believed, yourself, that this is all in your head?" They also treated depression and other primarily or totally mental illnesses as "just more symptoms" instead of the stigma other doctors I've seen have attached to them. How different from the attitudes of other doctors I've seen, ones that have said that I should see a psychosomatic-specializing psychiatrist, or blamed my disease on my supposed "anxious personality," or claimed that I just hurt because my "fat" was weighing me down (when I'm not particularly overweight, and he knew I'd been taking a med that makes you gain weight! -- and even if I'd been more overweight, that still wouldn't have caused my fibro or been a reason not to try to treat it). I' m so glad that I kept searching.

I've also been taking supplements, eating better, and continuing to exercise. All these things seem to have helped improve my quality of health. I've also had the pleasure of making more friends that have these illnesses, which is a great comfort and help to me. We share tips, celebrate each others' good health days, and commiserate on the bad health days.

If these illnesses have taught me anything, they've taught me the new title of this page -- "learning to dance whenever I can." I am now aware that everyone's grasp on being able-bodied is only temporary, however permanent they may think it is, and that I must learn to fully appreciate the good health days because I never know how long they will last. I have learned to take more joy in the small and simple things, and to better appreciate the people that I love and that emotionally support me. I have learned to take better responsibility for myself, my life, and my health. I have learned to better educate myself about the things that are important to me, and I have learned that doctors are as fallible as the rest of us. I have learned to better stand up for myself and to put up much less with substandard treatment. I deserve the best, just like anyone else does, and I will not put up with any less anymore. If someone doesn't treat me well, good riddance, even if they are a doctor or other health professional or if I used to consider them a friend. I am the only authority on me.

In addition, the crappy treatment I have gotten from so many doctors, hospitals, and insurance companies has given me a new possible career. I want to help reform the health care and insurance systems. Instead of getting depressed about the way I was treated, I got angry. And I'm also angry at how so many other chronically ill people are treated by the health care system and the insurance complex in the U.S. My negative experiences are not at all uncommon. The prejudice and misunderstanding I have received from some people has also strengthened my desire to educate other people about fibro, CFIDS, and other invisible chronic illnesses, and has helped me better realize that other people I see on the street might have invisible chronic illnesses or other invisible disabilities as well. Having these illnesses has completely changed the way I see the world.

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