Trying to get a diagnosis for 4 years! Where can I go

Hello,

About 4 years ago on holiday in cyprus , I Woke up in the morning in absolute agony. Difficult to move , really stiff all over, muscles, joints.

When home a couple of days later saw my GP, He thought I had Polymyalgia Reumatica, put me on Predisolone 40 mg. within 2 hours pain gone !

I Have been trying since to come off the PRED. but keep hitting pain barriers and have to up the dose to stop the intense pain.

I was refered to a Rhematologist , advised initial appoint ment could be up to a year so went private! The rhemy was a bit vague and thought it was Reactive Arthritis and sent me away with an anti inflamatory drug and reduction plan for the pred. He said it should all settle down in about 6 months!

when it didnt went back to see him ( NHS)had blood tests for various things , all negative. He did say I have fluid in my left leg. He was still a bit vague on the dx. long story short. He discharged me a year later with no definitive dx. without telling me!

Currently seeing another rheumy, again negative blood tests Still have fluid in left leg, She(rheumy ) says she is unable to give me a dx. until I come of the pred. She put me on a reduction plan which I followed to the letter but again hit a pain wall which is way to painful to overcome.

So have had to increase my pred dose from 3 mg ( when I hit the pain barrier back up to 10 mg SO FAR as still in pain!!!

Dont think Rheumy is going to be very happy, but pain is outrageous when I hit the wall.

How is it possible to get past the pain?

What do I tell the Rheumy?

How do I get a reliable dx.

Im on cocodomol (15mg) 8 a day.

Arcoxia, and when required 5 mg diazepam.

I havent any visible swelling, but skin around left foot feels tight as fluid drains down. left knee was very painful before upping the pred.

knee also has fluid in ( per my GP).

Dont seem to be getting anywhere, Rhemys are very hard to see .

Would appreciate any suggestions.

Thanks in anticipation,

Tony.

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