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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.

  1. Hi . You must be frustrated and exhausted at this point in your quest for answers. I am glad you finally made an appointment with a rheumatologist, especially since RA runs in the family, but keep in mind that there are many other health conditions that could be causing your symptoms and that you might have to push hard for answers. Has your primary care doctor ruled out Lyme disease? I only ask because of the swollen lymph nodes, the rash and the commonality of the symptoms. I did not have the typical target rash when I had Lyme disease. Instead, I had large, bright red oval patches all over my body. My doctor had never seen a rash like that with Lyme disease before, but, thankfully, the nurse practitioner eventually recognized it. I hope the appointment goes well and that you get answers and relief. Keep us posted if you feel comfortable doing so. Best of all wishes! - Lori (Team Member)

    1. how are you doing? Were you able to see the Rheumatologist? So hope that you have been able to get some answers by now and treatment started. It's a hard road to getting healthy at times, but hang tough, keep pushing for answers if needed. There is many people here that have been down this road be it for RA or something else. We do understand what you are going through.

      I so wish you the best in your quest and reach out if you ever need to.

      1. I would see a good nutritionist and physio. I think first step is to look at your diet. There are a lot anti-inflammatory foods that can help a lot. For me, the physio helped unlock my spine and then I got back into my yoga.

        Meditation or breath work would probably also help you a lot. We all get stressed and I think some kind of meditation or a ‘calming process’ (like walking in the woods or by the sea) really can reenergise you. Best wishes!

        1. Hi....I was originally prescribed Xeljanz and Arava. I was taken off my meds by my rheumatologist due to very low WBC Count. A year or so ago he diagnosed me with Felty Disease which is Super Aggressive Form of RA. He wanted to put me on Methotrexate a year ago. After I seen all of the side effects, I sd no way!!! I have a very bad phobia of needles, but with a lot of help from my rheumatologist staff and Genetech, I was approved for Rituxan infusions which are about 4500.00. I explained to Genetech that infusions were my last option to get RA under control. About 2 days later my friend from CC approved free infusions. I pay about 100.00 each time for use of the cubicle. Ive had 4 so far and after the 1st one my pain went away. My infusions last 5 to 6 hours. And get the butterfly IV needle. The rooms are chilly but ask for a warm blanket. I get a Tylenol, then Steroid and Benadryl which makes you fall asleep instantly. 30 min they start the infusion drip. Im hooked up to a BP cuff and nurses monitor and check you every 30 min. Good Luck!!!

          1. Hi . Thanks for sharing your story and glad to hear the Rituxan infusion has been helping. I know that many may not be familiar with Fenty's Syndrome, so permit me this opportunity to post for everyone out there this article giving an overview of Fenty's Syndrome: Hoping you continue to see improvement. Best, Richard ( Team)

          2. yes, please share the article about Feltys Syndrome so victims of RA are aware....thank you

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