It is a chronic disorder that causes imbalances in both brain chemicals and hormones (at the very least). There is evidence that this generally includes problems with the immune system as well, but not in the same way as with auto-immune conditions. The definitions for Fibromyalgia vary from source to source and often are either over-simplified or just plain incorrect. One simplified explanation I will give when someone asks what's wrong with me is that my neurotransmitters are sending out the wrong signals. This explanation is obviously the short version, and possibly may not even be medically correct, but it is easier than trying to run down the endless list of symptoms. Because of the fact that there is neurotransmitter and hormone involvement, the symptoms are ridiculously varied and often inconsistent. It's not just about the pain. The cause of Fibromyalgia is also a currently debated topic with several conflicting opinions. What everyone does seem to agree on is that there is presently no cure and that more research is needed.
It's a sneaky illness that rarely grants the same symptoms to all who have it - or even the same symptoms every day. Every morning brings a new surprise. What has become the worst part for me, after wrestling with this monster for close to 20 years, is not any particular symptom. It is seeing the slight eye roll when you mention the "F" word. I have learned to often just respond "fine" when someone asks how I am doing. It's easier than watching their eyes glaze over if I start to tell them how I am really feeling. I have a much thicker skin now than I did years ago. I am not easily offended by much of anything, but being dismissed as just another whiner still gets to me most days. I have learned to skip the part of trying to explain what I'm going through and go right into, "oh, I'm hanging in there. Thanks for asking!" It doesn't make the symptoms any easier if you can get someone to stand still and listen while you try to explain an illness that even medical professionals can't seem to agree on.
Just smile and be glad that someone cared enough to ask how you were doing.
Living with this disorder can seem overwhelming at times. The fight to understand it myself is often more difficult than getting others to understand it. It is a roller coaster ride of confusing symptoms and conflicting emotions. I had to make peace with the fact that this is my journey to make alone. I have to do whatever it takes to improve what I can, and learn how to cope with what I can't. There is so much advice on how to live with Fibromyalgia, but the very nature of this disorder makes each person's experience unique. I have to keep seeking out the things that help and getting rid of the things that don't. I choose to be an active participant in deciding on treatments and therapies. It is a very fluid situation. Some treatments or medications may work for a time and then suddenly fail to be of any use at all. I can't tell you how many times I have been on the brink of just retreating to my bedroom and giving up on leading any sort of normal life. It is hard to accept that there has to be a new normal now, and even that normal is likely to change at any given time. If I had to choose what advice to give someone who is trying to deal with this illness, it would be to keep moving (even when it hurts) and to keep seeking out what helps you to manage your own particular symptoms.
Until medical science comes up with a better solution, or divine intervention takes place, I intend to just keep learning how to dance with this unwanted partner.
I'm a curious-by-nature 50-something with random interests. Come visit often to see what the latest topic is.