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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.

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  • shelly author
    1 year ago

    Thank you Victoria , I was back at the Rheumy today and got diagnosed with Psoriatic Arthritis and we discussed the drugs to take and i have came away with leaflets on various. Because recently i havent had the same amount of swelling/ pain as in summer i have chose not to start meds till i have had another severe episode. If i do have a bad episode all i have to do is phone and we will start them. I hope i dont regret that decision. The hospital is 2 hours away. My R.F was normal. Not sure about recent inflammation markers but in years gone by they were always clear but glad i have diagnosis now i can understand and try help myself and if i am having a bad day am having a bad day. I showed Rheumy more pics plus one of rash and she said it was psorisis . Thanks again.- shelly

  • VickiN moderator
    1 year ago

    @shelly, I really hope the appointment goes well! So many of the symptoms you touch on could be connected to PsA (but your Rheumy will have to say for sure). I think you’re doing the right thing taking pictures, and it’s good to keep a log of symptoms. Sausage fingers and a previous diagnosis of psoriasis are red flags to most Doctors, and enthesitis (inflammation of where the tendons connect to the joints, like plantar fasciitis) is also in the PsA wheelhouse (and differentiates it from other inflammatory arthritises like RA). You may want to get a referral to a Dermatologist to check if your itchy skin is psoriasis. Many people on here also suffer from Sjogren’s, which causes very dry eyes and mouth, so certainly mention those symptoms to your Doc as well.

    Just a quick question, when you say your bloodwork is clear, do you mean for the RA factor, or for inflammatory markers? One of the hallmarks of PsA is that your bloodwork is clear for the RA factor (but you still have symptoms of inflammatory arthritis). There may or may not be inflammatory indicators, from my experience talking to people here, but I’m not a medical professional! Please let us know how you make out with your appointment, and know that you can come here anytime to vent with us. Sending positive thoughts your way,
    -Victoria, Community Moderator

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