@Shy1shy1 From everything I have read, it seems very plausible that I could have fibro. Everything else has been ruled out. The last rheumatologist I went to was 6 years ago and she had the personality of a wet mop. She used the tender point method to determine that I did NOT have fibro, but I think that's BS. Supposedly, they don't even use this method anymore. My appt. with her is in a month and I hope she does not use that method any longer because I've read some people don't even have the tender points. I also have tender places on my elbow, knees, hip and lower back that when you press on them they are sore like a bruise. I have not found anything for the fatigue yet. Since I suffer from depression also, it makes everything twice as bad and is hard to get out of bed. I think CFS is very similar to fibro, but I haven't been diagnosed with either. I usually will get tired of going to dr's and give it a few years rest without pursuing a diagnosis, but eventually when it's bothering me really bad, I will pursue it again and never get a diagnosis. It's so frustrating to know something is wrong and no one can tell you why.
I can relate to what you are saying.
The use of that tender points test has been completely discontinued by anyone who knows anything about FM because it's useless. some people (like me) will react violently to it some days and not on others, and not everyone with FM will react to it at all. It's BS and has been completely debunked. So let her know that if she tries it.
I am still struggling to find what will work for the fatigue, myself. Recently I started taking a supplement that is supposed to help my body absorb fats and thereby give me more energy. I am eager to see if it works. I also have chronic and severe depression, and that contributes to the fatigue considerably because when I am badly depressed I don't want to do anything except try to distract myself from how I feel and some days it's hard to get myself to do anything at all.
What you say about being frustrated is the norm for people like us. Trust me, even when you get a diagnosis of FM that frustration doesn't vanish because they
still won't be able to tell you want's wrong. FM is just what they write down when they can't figure out what's wrong, and it does you no good at all except for having something to write down on insurance forms.
I think part of having FM, which I am sure is also true of other similar things like ME/CFS, is that life becomes frustrating a good deal of the time, and learning to deal effectively with that frustration and not let it ruin your life is a big part of adapting and managing the new reality.
There is great value to learning how to accept what it is in the moment, understanding at the same time that acceptance is not approval or apathy, but just acceptance so that you are not spending precious energy fighting what unavoidably is in the present moment. You can work to change what is, but not if you are spending your energy on feeling it shouldn't be that way, or asking why it is that way, or being angry about it. This is something I have learned and found to be very valuable.
There are many things that can help with this, but it's not easy, especially when you have mental health concerns or issues as well. Believe me, I know. But I also know that with time and persistence you can learn to manage it and not to let it run your whole life. It just takes some time and a lot of effort, but you can do it.
