I need help a bit, so please keep with me.
I have had near constant pain for the last three months and as I think about it I have had similar isolated symptoms creeping in for a few years (Its hard to tell but would make sense). I also get brain fogging and today feels like someone is squeezing my brain for some reason. Any way I just got diagnosed on Monday with Fibromyalgia and I have been left hanging on an edge.
History - so many blood tests its unbelievable, been to rheumatologist, and the Neurologist on Monday who told me the diagnosis. So I was told that a physiotherapist may help, and that counselling may or may not help and thats it. No real explanation as to what may or may not happen now. Pain relief was to carry on with the medication that doesn't really work at the moment so I am going to up those as I have been told try taking more (Amitriptyline) and then shown the door.
So what do I mean about being left hanging on an edge. Well for one, its a shock there was a slight relief at putting a name to it but no real next steps apart from those mentioned above.
Questions that I thought of whilst being driving home.
What the heck does this mean?
Will I get better? Will I get worse?
What support is out there both financially and supportive groups. ?
Do I have this badly or medium or mild, I don't know. I always thought I had a higher pain threshold so how this works with Fibromyalgia who knows.
If I am at work and I take a turn for the worse how do I get home if my wife then cant leave work to take me home. (I work part time and have been waiting for a college to work to leave so I can go full time). So cant afford taxis especially at the moment.
The support at my work sucks, despite a doctors note saying amended duties and not standing for lengthy periods I am ultimately left to serve on my own (Retail) and using equipment that for the most part ultimately causes me pain. So is there any work re-training / replacement.
My mind is a mess at the moment, my family doesn't really understand my Mother took me to the hospital and on the way back I needed to get some milk. Walking back to the car I was struggling, stopping out of breath, pain exhaustion, and she just innocently laughed and signalled me to come on (Despite me explain how it made me feel on the way back). Fuck in that instant I felt so alone, misunderstood, I wanted to go find a cave in a mountain range to go and hide.
My wife seems a bit more worried about the money side of things (I can see it ticking in her brain), which is important but fuck at least ask me how I feel about this.
OK I understand its early stages and that my wife and family love me dearly but fuck at the moment I feel totally isolated.
So what the fuck has all the above shit been all about. Well relief, letting it all out, strongly it feels easier to strangers then those who love me. The other is any help, advice on what next, and I have to stop typing (You will be relived to know) as my wrist now feels like its going to snap, my fingers ache, my foot is going numb, my lumber has an elephant standing on it, and someone is still squeezing my brain.