Hi,
I have had fibromyalgia for about 5 years now. It's been an awful slow decline of constant pain particularly in my neck and back and debilitating fatigue.
I have been on a mixture of meds which has helped my quality of life considerably, one of them is Morphine. Every single medical person I see bar my GP gives me the same speal about coming off the Morphine , I'm not stupid and know exactly why they want me to come off it, but when I ask how I will control my pain levels and have any quality of life they don't have any answers for me. I've tried so many different medications and this was the combination that works.
Before I was on Morphine I was bedridden and thought seriously about ending my life. I have children and am married. My husband had to do everything and I couldn't look after my children so felt completely useless and had nothing to offer
My quality of life is still crap. I was let go from an office job because of my memory problems impacting my workload. I wrote everything down, but it still affected me and refused to make reasonable adjustments.After this it severely knocked my confidence in being able to retain a job. I also struggle with finding the right words when I'm tired and struggle with holding a conversation. It's probably self confidence but I worry I sound really stupid in conversations, lots of erms and you knows when speaking, while I try and remember the right words to say what I want to say.
I've been to the pain clinic but it wasn't at all what the GP said it was. The first person I saw made me want to run under a bus. He said It wouldn't ever get better which I knew but was just so negative, I felt awful then said he'd refer me for pain management but it only has a 40% success rate. When I went for my appointment I couldn't do the classes as I don't drive . Public transport is awful near me and doesn't go anywhere near the clinic. Was too expensive to get to by taxi due to distance plus it was a four day course so added all up was too much financially. I did see someone who saw me and told me to steadily increase my activity levels and not over do it. Which I constantly failed at as something would inevitably come up like school runs or having visitors or just wanting a day out. It always just ends up with me having a flair up. Now I just rest when I can and do the things that are important and acknowledge I'll just have to put up with a flair up
I have lots of help from husband who has his own health issues. He even has to help me in and out the bath which is just awful.
I have been following fibromyalgia studies and the one between Liverpool uni and one of the London unis. What interested me about this study is that it suggested fibromyalgia isn't the brain sending pain signals when the body isn't in pain ,but could be an immune disorder. This will probably make a lot of sense to people with this condition who may already have other immune disorders. I myself when being looked at for potential lupus was told I had markers for possibly developing an immune disorder in the future.
I know these studies take years but I feel hopeful for the first time that there could possibly be an actual treatment for people with this condition.
My question is after this long thread ( thankyou for sticking by me so far) what are people's thoughts on this study?
Has anybody heard of any other studies of interest? Anybody struggling like me or tried any treatments which worked for them? Let me know.