Hi, this is my first time on this site. I came across it on Facebook, as I'm sure many others did.
It's taken almost 2 years to get my diagnosis of Fibromyalgia! My GP has been pretty rubbish, and just wanted to mask my symptoms with pain killers and anti-inflammatory tablets. Just by chance, I saw a different GP one day, who asked why I'd never been sent to a Rhuematoligist. He made me a referral which came through quickly, and within 15 minutes, I had my diagnosis. It was a relief to finally know what was causing all my symptoms, but frustrating to learn that there's no cure!
Since I saw the Rhuematoligist in November 2011, I've had appointments at the pain clinic cancelled several times on me and no other follow-up treatments of any kind. I've had to go to the hospital myself to chase up the pain clinic and the physiotherapy dept. It looks like I may get into both within the month, but not without me having to take matters into my own hands, and my GP refuses to take any further action until I've seen both departments, and the pain clinic have already said that I'm on the wrong medications!
I'm also having to fight for DLA, as they don't seem to take FM seriously and don't believe that on some days I can barely do anything for myself. Even with the help of the CAB, I am still having to take my case to a tribunal.
As I'm sure everyone else with FM does, I have good days and bad. I've been told that exercise is a good thing to do, but when I have a physically active day, it sets me back several days to recover and I can barely make it out of bed I've at least got past the depression side of things since getting my diagnosis but still have days when I feel completely useless and pathetic.
My Sister-in-law has terminal cancer and is already past the time the doctors gave her 3 weeks ago. While the whole thing is extremely emotional and stressful for the whole family, for myself and my husband there is the added stress that we will become her 11 yr old autistic sons legal guardians when she passes away. We are the only family members who can take him on, and no-one would see him go into the foster system when we have such a tight-knit family. However, I do worry that I'm not going to be able to cope on my bad days, especially when he's not at school. After seeing his Mum suffer in pain, I don't want him to see me suffering and think the worst.
He has been to us several times to stay for short periods of time to get used to the house and how we do things, but he's never really seen me on a particularly bad day. He does know that sometimes I get tired and have some pain. I just worry that it will all work out.
As much as I suffer with pain in my neck, shoulders, shoulder blades, left arm, left hand (especially my thumb), lower back and occasionally my legs, and of course the horrendous headaches that last for days, my worst problem is the tiredness. My sleep is always disturbed, both night and when I go back to bed during the day, and no matter how long I spend trying to rest, I always feel like I'm struggling to stay awake. My concentration and memory are definitely not what they used to be, which may be due to lack of deep sleep or the medications I'm on, but it makes life hard and frustrating at times.
I am sure many of you suffer the same symptoms, pains and frustrations that I do, and it's great to find a site where others can relate to what I'm going through. Friends and family show support and sympathy, but they just don't get it! I feel sure at times they think I'm just being a lazy cow!!
I hope and look forward to making some new friends here and offering support and sharing experiences with you.