Long wait for diagnosis
Hi folks, I was diagnosed with soft tissue rheumatism about 9 years ago. Episodes of swelling, stiffness…flu type pain but it only happened about twice a year or so. Then over the years, it has increased to almost every other day except in summer where the heat gave me relief for a few months. Over that time I lost 4 jobs due to pain and swelling and stiffness till I couldn’t do a job and had to leave. Having plantar fasciitis and weight-bearing pain in my feet has been horrendous, tendonitis in hands and mechanical back pain. By the time I got scans I wasn’t in an episode so now my GP doesn’t believe me. One physio is telling me there is no such thing as soft tissue rheumatism.
Then this summer I had worst pain ever with fingers and toes like sausages. Stabbing pains in shoulders, too. Burning stiffness so bad took me ages to get out of bed. Dry itchy eyes and mouth and very itchy skin. And absolutely exhausted. I could sleep standing up. I couldn’t squeeze hands drive or do very much. When a cold spell came in in November 2017 it lifted the inflammation, swelling, and burning – nearly all symptoms gone except the odd short spell.
My appointment at Rheumatology was at end of November which I waited 9 months for. A week after the appointment I had one patch of a very stingy red itchy patch on my arm that looked like psoriasis but it has been dismissed. I get other stingy itchy bits since but doesn’t look as bad. Luckily I took photos over the summer. The only proof I have as my bloodwork has always been clear. When I saw Rheumy first thing she said was psoriatic arthritis but can’t give me diagnosis until she sees it in the clinic. Going tomorrow and again not in an episode though I have taken more photos. I don’t want to suffer again like I did in summer. Does it sound to others like Psoriatic Arthritis? Thanks.