Looking for advice

Hello, this is my first post. I’ve been looking into RA for a while as I’ve been experiencing symptoms for around 3 years but been burying my head in the sand. Sorry this will be a long one but I just need to get something written down.

I’m now 39 and I have finally made an appointment to see a Rheumatologist.

The reason for putting off for so long is because I thought it was all in my head, or overreacting but now I seem to be getting worse. My mum was diagnosed around 6 years ago, I remember her being like me for years but doctors would fob her off with depression etc. inflammatory markers on blood tests were always marginal until one day the inflammation got so bad it never went down and that’s when she was diagnosed- sadly it seems like it was all a little too late because now her shoulder joint has fused together but she can’t have it operated on until the inflammation reduces. Methotrexate didn’t work but infusions are helping now thankfully. But I see how she has suffered and I don’t want to be the same.

I don’t really know where to start because I can’t pinpoint the exact time my symptoms started but it started to escalate November 2020 where I spent about 3 weeks feeling awful really achy joints, exhausted and no energy I also had a persistent water infection that would not go away. Then I developed a really high temperature and the lymph node at the back of my ear was huge and so painful. Over the next 24 hours I developed a rash (not raised) all over my body and face, it wasn’t itchy but it was hot and raging. Doctor wanted covid ruled out which it was but they said it was due to an allergic reaction which I do not agree with. I had a blood test a few days later which showed high inflammation across the board. Doctor said they weren’t connected. So at this point im just thinking no one is taking me seriously so I stop engaging with them. After this ‘attack’ I didn’t feel poorly for a long time. It was great. I’d have a few off days but generally felt fine.

Then I started to get repeat water infections which made me feel quite poorly and when I have them I’m achy and tired. My brain also doesn’t want to work. It’s like I have brain fog and I forget how to do the smallest things or I do something silly like try and remove something hot from the oven but forget to wear a mit.

Now my current issue is my head, this has been going on since May where I have a woozy head all the time. If I bend down the room spins, when I lie down in bed the room spins, it makes me feel quite sick and I also have lots of pain in my neck at the base at the back. Sometimes if I move quickly I get a stabbing pain in my eye or my tongue it’s so bizarre. The doctors have been treating me with vertigo but the tablets and exercises do nothing. The head issues and neck pain are everyday, whereas about a year ago they were sporadic now it never goes.

Every couple of months I also get a really high temperature which is coupled with flu like symptoms and achy joints (feet, hands, neck, bottom of my spine) it goes away in a few days but takes me about a week to feel normal again. Well o am having this right now so badly this time that I have called in sick to work which I never do (last time was Nov 2020).

Last blood test I had in July showed soft marker inflammation across the board, the doctor said this wasn’t enough for a diagnosis but I have called the doctor again so I can have a repeat blood test now im feeling unwell to see what is going on in my body.

Im lucky enough to have really good private medical insurance and seeing a RA next month but I just need some support. I feel like im going mad. I feel like im not listened too and I feel like I’m ageing before my time.