Almost 30 years without knowing what’s wrong.

LensMum · 29. Aug 2024, 15:50

Hello, this is my first post. I am in the middle of another ‘flare up’ of symptoms that have floored me for years and I am determined to find an answer. I apologise that it is a long read.

I am a 51 year old female. As a late teenager, around 16 or so, I started to get flu like symptoms sporadically. I’d get a headache, dry mouth, throat and eyes, awful tiredness, heavy feeling and aches arms and legs. This could last days to weeks and would disappear completely in between. These episodes have lasted all my life, in recent years becoming more and more frequent. I am in the middle of one now.

At around 18 i remember my knee swelling and being really painful. I thought I’d hurt it and eventually it went away.

In my early 20’s both hands seized up, clawed and became extremely painful. My knees followed suit and I could barely move for what felt like months. I saw the GP and bloods were taken and he called and told me he was very sorry but I had Lupus. I never did see anyone else. The flare up ended, I went back to normal and thought no more of it. This was the late 1990’’s.

After that, the “flu” like episodes continued, and now and again a joint somewhere would get painful and go away again. For some years the flu type feeling bothered me more. I was soooo tired and listless for a youngster!

In 2006 I went to bed with terrible pain in my elbows. When I woke up the next morning, I couldn’t move. My whole body was in pain and I was completely seized up. It was scary. I couldn’t do anything for myself and the smallest activities exhausted me. I was like this for about a month and it gradually started to ease. My then GP told me I had a virus. I eventually used a healthcare insurance I have, but by the time I managed to see a rheumatologist, I was fine. He was very thorough, but nothing showed in my blood. Physical exam normal.

I had smaller episodes, not so debilitating and time passed. The flu like episodes continued sporadically, sometimes flooring me with fatigue.

In 2012/13 I seized up again. This time my jaw, hands and a knee. GP did bloods, RF over 300. This time I saw a rheumatologist who said I had rheumatoid arthritis. I wasn’t convinced because I was given some literature and didn’t recognise the pattern of my symptoms on there. I was given methotrexate and I eventually felt better (but would I have done anyway as previously had happened). I had an unrelated surgery and had to stop methotrexate for it and never took it again. I was discharged by the rheumatologist who agreed we should wait and see what happens as symptoms had all but gone again.

since then I’ve had increased joint flare ups and I am very stiff when I get out of bed, it doesn’t take too long to get going though. Trouble is now, it hangs around. My jaw, left ribs, left foot and lower back have suffered the most in recent years. Ribs, foot and back never goes away completely now. My hands ache and can’t grip very well.
Another rheumatologist in 2021 diagnosed palindromic rheumatism and fibromyalgia.

Earlier this year another huge flare up of all symptoms, referred to rheumatology again but GP refused to take blood tests. 3 months later, rheumatologist tells me nothing is wrong, no inflammatory disease present. X-ray of foot clear. Will see me in 6 months but probably discharge me back to GP.

Last week I started to feel dreadful again. This time it is my lower back affected most and left ribs and the flu symptoms are raging. GP did bloods and I have RF of 429. They haven’t yet got the anti CCP back yet.

Every time I’ve had a bad flare up and visited a GP, apart from earlier this year, they’ve done blood tests and the RF, AntiCCP and I think it’s ESR and CRP(?) have been very high/abnormal.

just as an aside, I was diagnosed with under active thyroid in my early 20’s and it wasn’t until 20 years later I found out it was autoimmune related. Over the years, most symptoms have been blamed on my thyroid which is why help was delayed during flare ups.

I really apologise for the length of this post. Thank you so much if you’ve read this far.

I’d be really grateful for advice, similar experiences. Anything really before I call my GP tomorrow asking if we can get the rheumatologist appointment brought forward.