Following an op at Christmas, I experienced severe stinging in base of buttocks and hamstrings alongside pain in hips. This didn't go away so I went to see my husband's physiotherapist. Armed only with the information I had at the time she advised asking doctor for a hip X-ray, although we did not discount psychosomatic symptoms due to the trauma of losing my mum at this time as well. The hip X-ray took over five weeks to process. Meanwhile I wondered if our bed mattress was causing me problems, so spent a fortune on a new one! However symptoms were progressing faster prompting me to research the net.
I hit the jackpot when I came across symptoms for PMR in an article where a fellow sufferer also brought a new mattress and found other reasons for her symptoms. This really resonated with me. Reading on came information about GCA, which prompted me to pursue a diagnosis with a strong sense of purpose.
Returning to a different GP, new to me, I told him I thought this was what I had. He listened sending me for relevant blood tests. These came back within normal range, but fortunately doc said this didn't mean I didn't have PMR. He referred me to Rheumatology at hospital.
A week later I went back to docs in dire straits! My legs were like lead, the pain so great and wide ranging I didn't know what to do with myself. I couldn't bend my knees and had swelling around my throat.
He was in two minds. Whilst he thought it was PMR he couldn't be sure. We hadn't heard back from his referral made a month previously and bloods were not supporting diagnosis. He wrote me a standby prescription for 30mgs of prednisolone daily. However he stated he would prefer me to see a Rheumatologist before taking any meds. Given we had not heard from the hospital, my significantly increased symptoms I asked how to go about speeding up the process of diagnosis. He suggested a private hospital close to the NHS hospital he had referred me to.
As I do not have private insurance I tried to contact NHS hospital first. Fifty minutes later I was still hanging on waiting to be connected to the appointments department! I hung up and phoned the private hospital. I could have had an appointment the same day, but due to work commitments arranged for the following Saturday.
The consultant was thorough. He completed physical assessments strongly suspecting PRM. He wanted more blood tests and reduced the prescription by half! The blood tests were arranged for the Monday (the very next working day). The consultant rang me himself at 9.30am to check I understood and would be following his instructions. On Tuesday I started 15mgs of pres and by Wednesday the difference was remarkable! A miracle drug!
My consultant asked me to ring his secretary today (Friday) to let her know how I was basing this on a 90% improvement. He really stressed that I shouldn't be satisfied with anything less than 90% at this stage. In addition he is placing me on his clinic list under NHS at the local hospital who have still (six weeks on) yet to offer me an appointment for an initial consultation which is likely to be a wait of another three months.
Jumping the queue goes completely against my beliefs, but I could no longer tolerate the pain. I didn't really understand what was going on and was very close to going to A&E due to the swelling around my throat. So I console myself that, compromising my beliefs, meant that I didn't take up anytime in A&E unnecessarily.
I am under no illusion that the journey ahead may be long and hard (thanks to reading forums such as this I feel well informed) but wanted to tell my story to encourage others to save months of pain and anguish by; listening to what your body is telling you, accepting what your body is telling you, being persistent and finding a way through so that doctors and consultants listen, understand and intervene.