Does anyone else have difficulty in getting their GP to refer them to a specialist? I'm sorry it is a long sage, but I just don't know where to go now.
I had pain from sciatica, arthritis and tendonitis over many years along with episodes of bursitis and pain and tenderness that was undiagnosed. I also had sleep disturbance throughout my life which I knew related to my childhood experiences and their effects - as I trained as a psychotherapist and had years of personal therapy before I understand the links between my symptoms and history. After a bad fall 4 years ago I asked my GP to refer me to the rheumatologist which she did and she also referred me to the Sleep Clinic to check I wasn't experiencing sleep apnoea though I was sure I wasn't. When I finally saw the rheumatologist he confirmed I have hypermobility syndrome, fibro and arthritis. It had felt like I had to go through a maze to get a diagnosis.
Since then I have coped without meds or input from specialists though I have been in pain throughout the period. I struggle to find a way to sleep because of shoulder tendonitis and pain in my hips which I am fairly sure is arthritis triggering sciatica and I get myofacial pain which locks my muscles even when I'm just watching tv. During winter I find it very difficulty to straighten up. Every day my knees are excrutiatingly painful when kneeling and sometimes when walking up and downstairs, they seem to give way as do my ankles, my hips hurt frequently every day as do my shoulders, and I get tenderness at the fibro points and also where I broke three ribs during the fall.
In March I asked my GP to refer me to the Pain Clinic but she said they would only give me medication which she could do. I also asked her to refer me back to the rheumatologist and she said she would but suggested I might try chiropractice for the sciatica but the first five sessions each left me in acute sciatic pain for days afterwards and now I have read that chiro is not recommended for people with fibro as it trends to trigger that - so why did the GP suggest it! An experienced physio who I saw privately after the fall said never to stimulate the nerves when an area is already painful and inflamed! The GP also referred me to a physio - I thought that was for my shoulder but when I got to the appointment it was for the ankles which the physio put down to weak muscles - the chiro later said my ankle muscle strength was extremely good and better than hers... After a month I hadn't received an appointment with the specialist so asked another GP when I saw him about something else, he said he would chase it up and if necessary refer me himself, another month passed and no appointment came. I chased it up with the GP surgery and this morning they have told me that the physio is assessing on behalf of the muscular skeletal team and will refer me if I need it. I feel as if I am going around in circles as although the physio is good she says she is only allowed to assess and treat the specific thing I have been referred for - which in her case is the shoulder which she says is tendonitis, whereas I wanted to see the specialist in order to tease out what's going on with all the rest - why my hips are so painful, have a scan etc, also talk to him about referral to the pain clinic as people with fibro locally say they were offered a 6 week course with yoga, pilates, pain management techniques, cognitive therapy and info on meds as well as meeting other people with fibro - I only found out about the local group by chance years after being diagnosed...
Sorry, I am ranting on, but does anyone have any advice?