Thread by @VictoriaGoldma2

The scepticism about Long Covid by some healthcare professionals worries me. I’ve had a post-viral syndrome for over 30 years, after my immune system overreacted to a throat infection, attacking my joints, when I was 13. I don’t often discuss this publicly, but here goes... 1/10

At 13, I couldn’t walk, hold a pen/cutlery properly or do simple tasks without severe joint pain & stiffness - for up to a year. 1st GP wasn’t interested in joint pain, just my throat & husky voice. 13yo kids don’t get arthritis, he said. Checked my thyroid - it was fine. 2/10

2nd GP wasn’t sceptical, fortunately. Sent me to a rheumatologist. Blood tests showed inflammation - I had arthritis. So painkillers, hydrotherapy, physiotherapy ... Even 2-3 years later, I still had residual effects & couldn’t go on long walks without joint pain & fatigue. 3/10

This then went away. Soon I was back to my usual activities & sports (weekly tennis coaching - I had skills!). But doctors didn’t know enough about auto-immune & post-viral syndromes - or thought to protect my damaged joints. At uni, I was playing tennis for 3 hours a day. 4/10

Then the pain & stiffness came back (neck & shoulders mainly) & the same rheumatologist diagnosed fibromyalgia, a barely recognised syndrome, and didn’t really give me much advice. Said my joint pain may come back if I get a virus (e.g. flu) or feel run down. He was right. 5/10

I was ok-ish for years. Had a few related symptoms/pain syndromes, as my immune/nervous systems still weren't happy. But I carried on - full time work, 2 kids, life as normal. After all, it had been decades since the arthritis ... so I 'must be fine'. No one knew otherwise. 6/10

15 years ago, after a flu jab, my immune system over-reacted badly & my symptoms escalated, esp. pain & fatigue. My vitamin D levels plummeted. A rheumatologist told me to never to have a flu jab again. (Yes, I’ve had the Covid jab. After 9/10 days & extra vit D I was fine.) 7/10

Now I get fibro symptoms most days. I work full time (with overtime), I’m terrible at pacing myself, ignore pain, fatigue etc. as much as possible (prob not wise). 7 years ago, an MRI showed early-onset osteoarthritis in both hips (prob other joints too - knees, feet, hands) 8/10

All this from a ‘simple’ throat infection at age 13, when my immune system attacked my joints. So healthcare professionals & government, please take Long Covid seriously, all symptoms, all severities - in people of all ages. Give ongoing support & advice. Find treatments. 9/10

If you have (or may have) Long Covid, push your GP to take it seriously. Don’t be fobbed off. You know your body, your symptoms. I wish docs had known more about post-viral syndromes when I was a teen. I didn't know anyone with it. You’re not alone - find a support group. 10/10

PS: Now I’d better do some work. I forget how long it takes to write a thread (and hopefully a coherent one). This is not a post looking for sympathy - other people have much worse post-viral effects, or worse health probs. If you’ve been reading, thank you. (11/10!)

Just want to make it clear, this isn’t an anti-healthcare professional thread. There are wonderful doctors out there, many taking Long Covid seriously. And medical provision for Long Covid & post-viral syndrome is improving. Long Covid is new & doctors are learning more about it.

But there’s still a long way to go. If you have Long Covid, don’t push yourself too much too soon, even if you feel you want to, or feel you can.