Hi everyone, my post will be long, so thanks in advance for taking your time to read. I feel hopeless and losing my hope to live and enjoy a life, reading some of your posts making me feel that at least I am not alone. I am a 36 year old Turkish Cypriot origin woman living in the UK who have been trying to get a diagnosis for over 6 years for my numerous joint, skin, mouth ulcer disorders. Back in 2011 I had DVT, at the time I was 23 years old and on contraception pill so they concluded that the pill caused it. I stayed on blood thinners for 6 months and then stopped with no problems. In 2015 I have started having very random joint stiffness and pain, sometimes on right knee, sometimes left (never on both sides at the same time) which only used to last a couple days and then disappear like nothing ever happened. In a couple of years the knee problems started becoming more often, but still only for short time. There were no visible swelling or redness. With knee pains, i also stared some symptoms on thumbs, elbows but again mild and short lived. Fast-forward to 2023, this year in April all of a sudden I had a big flare up which was very different than any of the previous joint pains. I started having new mouth ulcers every week, constantly, they were small white ulcers, always on tongue. A few weeks after tongue ulcers, I started having the worst hand pains (on both sides), hands felt very hot and painful for a couple of weeks, even typing was painful. Again nothing visible from outside, no real swelling or redness. Only I knew that my wedding ring was feeling tighter than normal, but other than that, looked like perfect hands. Severe fatigue and depression like I never experienced before also accompanied my hand symptoms but this passed in 3 days where hand pain stayed for a few weeks. My doctor run every possible blood test to check for lupus, RA, Gout and other inflammatory arthritis however all my blood-work, joint MRI, ultrasound is normal, including ESR and Crp. I however tested positive for HLA-51. Because I don’t have genital ulcers or eye inflammation, my consultant can’t really say if it’s Behcet’s or not.
In May the consultant put me on Hydroxychloroquine trial for 6 months which I am not sure if it’s coincidence or not but stopped my hand pains, didn’t fully stop mouth ulcers or knee joint pains but they also became less often and less severe. They then stopped the trial in November to see how I’ll get on and 5 weeks after stopping hydroxychloroquine I’m now having the worst 4 weeks of my life. Beside physical symptoms, I feel like something is happening inside my brain, making me majorly depressed that I can’t snap out of. My Doctor put me back on Hydroxychloroquine (2 weeks now) it’s helped my hand pain but for the past 1 week I am having random nerve pain. My left foot skin feel like it’s burning, it hurts to put a sock on but looks perfect from outside. Does this sound like Behcet to any of you? I feel like unless I can get correct diagnosis and treatment, there is not much point in life and I am in constant pain
Colchicine - does it help your joint pain?
Is it possible to be symptom free?
Feeling frustrated with my diagnosis
Well, you don’t look ill.
Face Pain - can anyone advise?
