Unusual widespread body pain

[Grubbypaws]

Hello everyone. I am one of those lucky people who was in remission from RA for over a year but things have taken a massive downturn in a matter of days and my symptoms are so odd, I wondered if anyone else has experienced similar.I was diagnosed with Primary Hyperparathyroidism and RA in 2019 and subsequently underwent successful surgery to remove one parathyroid gland in December that year.

My RA has been well controlled with a very low dose of Plaquenil for over a year now but about 2 weeks ago I suddenly developed what I thought was an eye infection - very red eyes and felt like sand in them. Got drops from the pharmacy and it cleared up somewhat after a few days.

Then, I developed pain in the back of my skull and the upper chest area on the left side. I put this down to a chill from driving with the car window open, took ibuprofen and soldiered on. The pain then moved to the right side and then spread to my ankles (couldn't bend them and left anklebone looks like I've banged it, red and sore) and then to my left hip.

Fortunately I had a rheumatologist appointment booked for Wednesday and he was as puzzled as me! He suggested I take a short course of prednisolone and asked me to call him this morning to try to gauge if this is actually rheumatoid inflammation or any kind of arthritis. The prednisolone has helped somewhat (he has asked me to keep taking it over the weekend and to call him again Monday) but I am still struggling to walk and sleeping is proving difficult from the pain at the back of my skull and my hip when lying down. I have blood tests tomorrow.

Sorry this is a very long post but this is quite different from what I experienced the first time around so if anyone has any ideas what this might be, please do comment.

Thank you very much.

[sylvi]

Sorry i don't have any answers for you. I am sending gentle hugs though. xxxx

[Neonkittie17]

Sorry to hear you’re not doing too great. Plaquenil can alter your eyes in some patients but you said it had cleared up. It’s so cold at the mo that anything we have can feel even worse. Your blood tests should should of there’s a higher rate of inflammation and if your med is still working well. I hope it all settles and the rheumy would have been Chen imf for signs of hot swollen joints/signs of RA inflammation when they saw you. I hope you’ve had your phone call and all calms down very soon. 🙏🏻

[Grubbypaws]

Thank you, looks like a possibility. I will discuss this with the rheumatologist on Monday.

[Hidden]

I’d have a chat with your GP… it doesn’t sound like RA to me…

Having said that my legs don’t really work when it’s cold.. Could the weather be a factor?? My heating is on 24/7 atm…

[Grubbypaws in reply to Hidden]

Thanks, that's what the rheumatologist said too! He's given me a short course of prednisolone which has helped a lot - at least I can sleep now - and I'm to call him Monday. I'm pretty sure weather does play a role in it all but I live in Greece and it's quite warm this year (but damp, which is a killer!).

[Hidden in reply to Grubbypaws]

Damp is lethal… must be lovely in the summer though..

Damp or humidity make me really poorly. Dry heat or dry cold are much better…

[Grubbypaws in reply to Hidden]

Yes indeed. A physiotherapist once asked me if I believed that a change in weather could cause a flare - I said omg yes, I am a living weather vane!

[Hidden in reply to Grubbypaws]

Same… I am quite the expert on predicting rain 😇

[J1707- in reply to Hidden]

same here .. who needs the weather report. I know when I wake what the weather is just by my body’s reaction .

[Ryka in reply to J1707-]

So happy to read this sub-thread. Before RA i had no idea what it meant when characters in novels said things like "there is a storm coming. I feel it in my knees". But after getting RA, I go up and down with the weather. So, glad to discover that others have it too. The sudden rain and cold of the last few days here (on the continent) have been terrible. I had to go on prednisone for 3 days to get it back under control.

[nomoreheels]

I don't have any words of wisdom I'm afraid, just hope that your Rheumy has an idea what's going on. There are many types of autoimmune arthritis, some rarer than others, it could be that you have one, the tests you're undergoing may reveal more, I hope so anyway. I would think the weather is more temperate there than here so less likely to be due to the cold.

Keep us updated?

[Grubbypaws]

Thanks, I will. Had blood tests this morning.

[J1707-]

I’ve had the same problems. Initially diagnosed with RA but I’m now displaying the same symptoms as you Rheumy now thinks AS . Look up Axial spondyloarthritis . I’m not diagnosing but you never know

[Grubbypaws]

Thank you, I will Google that now. Any possibilities are helpful at this point.

[RAat13]

Wow, I posted similar to this the other day. For the last 3 months I've had pain everywhere, my sternum felted bruised, I couldn't lay on my sides as or hurt my chest and now it's all over my body, my muscles ache too and feels different to RA, I've had it 21 years. I had covid in December and had no symptoms, was fine but 3 weeks later I got poorly and I'm still like it. Pretty sure it's long covid.My chest pain originally started last April down on my bottom right at the back it felt like I had trapped air, nearly a year later they still don't know what it is and I can't sneeze, burp or yawn without pain anymore..

Hope you get some answers and feel better soon, definitely listen to your body and rest x

[Grubbypaws in reply to RAat13]

That's interesting RAat13. I also had COVID-19 back in September and it was mild but I caught a dreadful virus in November and had a hacking cough with it which worried me so I had a chest x-ray and the pulmonologist said it showed signs of long covid. Fortunately I got over it in about 4 weeks.My blood tests came back late yesterday showing high levels of inflammation - CRP 27, ESR 20 and a section of the white blood cell count high also high. I will speak to my rheumatologist again today now he has the results.

I hope the doctors find an answer for you and you start to feel better soon.