it is has been a little while since I have posted on this forum. Life and work have kept me very busy, and my fatigue seems to be kicking in rapidly.
I found myself thinking this morning that in some ways, I wish I had never been diagnosed at all. The reason being that when I was younger and suffered from fibromyalgia (but never knew I had a chronic disease) I was still able to chalk it up to insomnia or overworking. It may sound silly but I was happy to just to believe this was the case for quite some time, maybe I was scared of the answer I would receive when I finally got checked out and received my diagnosis. Has anyone ever felt this way before? Can anyone relate?
I can totally relate to this, sometimes you wish for something, ie a diagnosis, but it doesn't actually help as much as you would have liked. Thinking back to my teaching career, many times parents were desperate to get their children diagnosed with dyslexia, autism and other conditions, but at the end of the day it didn't help as much as they wished. Treating the symptoms was much more effective, especially as they were often so young. Not quite the same, I know, but I often think of those parents since I got my diagnosis. I do think with Fibro we can move forward, knowing what it is, but still have to be mindful of all the symptoms we experience, just in case it is something else! This tricky condition will not let us rest!
Thank you for taking the time to reply everyone, this has been a nagging subject in my mind for quite some time. It is reassuring to me that I am not the only one who has ever felt this way. I am glad in a sense to know what condition I have, but I will not hide that I occasionally long for the days when I thought it was just persistent muscle aches or maybe something I ate that disagreed with me. It is better to know what I have so I can work with my doctor and take steps to gain some relief, but I always feel a pang of sadness and frustration when I am asked when I last felt well. I really don't remember the last time I felt "well", the best I can do is say some days are better than others.
It encourages me to hear your stories though. I think there is just still a level of acceptance that I have not yet fully reached regarding this disease.
I just had to respond, all the lovely replies that you had from our lovely members! I understand that you are going through that acceptance stage, and it does take a long time. There are ways forward, there are things we can do, and , like many of our members we can lead fruitful, tho not quite the same, lives
I am actually glad I got the diagnosis... in a sense. Part of me thinks its a catch all...I have an immune deficiency that can cause some joint pain but I also have trigger points, nerve pain, etc. Anyway, fibro means I am in pain anyway...BUT the joint pain I feel is not damaging. I can do many of the things I want to knowing I am not damaging myself. Pain I can push through... gonna be in pain anyway.
On my way to diagnosis I was told I had MS...Lupus...RA...fibro is the lesser evil.
I take Elavil so I can *mostly* sleep at night... but it really helps keep tingling nerve pain and such to a dull roar. A diagnosis gives me some piece of mind. Yeah, doesn't really change anything but helps my mindset.
There is no ignorance is bliss for me because my body 'hates me'...lol....I can't even pretend to ignore my symptoms.