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Fibromyalgia or something else?

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TarTaurus
TarTaurus Community member Posts: 5 Listener
Hi,

I know you guys can’t offer me official advice or diagnoses, I just don’t know who else to ask.

For around 6 months I’ve had new symptoms that are very slowly worsening. I have a rheumatologist for lupus, and have a myriad of other issues.

My rheumatologist insists these new symptoms are due to my fibromyalgia. I’m not rejecting that, but it doesn’t quite add up. The symptoms bothering me most are: 

- stiff, painful joints in hands
- all mcp joints most painful
- thumbs affected the worst
- occasional swelling around mcp joints
- redness on knuckles
- trouble with grip strength and pain

I know fibromyalgia could be causing the pain, and hEDS is likely making it worse. My fatigue is awful these days, too, but things like the swelling and redness don’t add up. Typically, neither symptom was there the day of my appointment (because I’d had to rest for two weeks before), and my doctor wasn’t shy in showing how sceptical he was. 

My last bloods also didn’t show any signs of inflammation. I know rheumatoid arthritis can occur without inflammation markers, though. 

I’m curious what others’ experiences are with similar symptoms, because I know online lists and leaflets can’t cover everything for things like fibromyalgia.
How does anyone cope? I literally just cried because I couldn’t lift the kettle to make my coffee 😅
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  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,911 Disability Gamechanger
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    Hello @TarTaurus

    I'm so sorry you have been in so much pain and experiencing so many new symptoms. 

    I have a different chronic illness and remember the days where it all acted as good as gold when I saw the doctor! So I kept a journal on my phone. I think it may help you to track when the symptoms come up the most, how they effect you (like you said, you couldn't life the kettle) and see if you can book in with your GP / Specialist to discuss them further in a week or so.
    Hannah - She / Her

    Online Community Coordinator @ Scope

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