Carleighs mum

[carleighsmum]

hey everyone so I'm being diagnosed with ra and waiting on my urgent referral already i have bone errosion in my ribs , my question is did anyone suffer from horrible headaches to the point it affected your eye and is sinus problems related also

[oldtimer]

I'm sorry to hear you need to join the merry band here. Have a look at the NRAS website for advice about what to expect at your first appointment.

You need to ask your medical team these sort of questions. We can't diagnose remotely, nor do we have the necessary skills!

Sinus pain isn't usually connected but pain in the temple area can be.

And what do you mean by affecting the eye? Loss of vision (need to see Dr urgently) or infection (not related).

[LoneEra]

Sorry to hear this. Follow up with your GP tomorrow and explain your symptoms. Also ask that they chase the rheumatologist if you don’t actually have an appointment yet. Good luck x

[Green230461]

RA can affect your eyes and sight so get yourself looked at by a good ophthalmic optician too. Best of luck 🌺

[Klutzy]

Like you, I have no diagnosis for RA. I get excruciating headaches, worse than migraines I've had. I believe they come from my neck tightness. I don't get much pain in the eye nor are my sinuses affected. Mine sometimes start at my temple, go down to my cheek and into my neck. I haven't found any treatment that helps them, except time. While the chiropractor has helped to loosen my neck muscles, I still get those headaches. It feels like someone is jabbing a screwdriver in my head or pounding w hammer.

If you haven't looked up PMR, that is another autoimmune condition that sometimes get confused with RA. Yet it effects larger muscles like hip and shoulder, but not so much hands or feet. Many with PMR get intense headaches, from what I've read. Hopefully your Rheumy can see if your head and eye pain are related. Hope you find answers soon.

[Mmrr]

Like others have said a medical opinion is necessary.In the early days whilst waiting for a diagnosis, I had the most awful brain fog, it was completely debilitating and often accompanied by eye and head pain. Once I started on RA medication it all settled down. If I let myself become overtired I can get a mild version of it. Rest is the only way to combat it

Unfortunately many Drs do not understand brain fog the extent or the debilitating nature of the condition.

[Madmusiclover]

Please seek help from your GP. Headache and eye pain could be something quite serious. With RA we have to persist in demanding medical attention. Please ring your GP.

[carleighsmum in reply to Madmusiclover]

Iv already been to hospital 3 weeks ago where they performed a brain scan which was clear thankfully only thing showed was inflammation behind my left eye and sinuses

[Madmusiclover in reply to carleighsmum]

Good news.

[Hidden]

I agree with those who advise to seek help urgently. There is a type of Vasculitis called Giant Cell Arteritis/ GCA which can cause these symptoms and needs diagnosing and treating as an emergency.

Please phone a gp or out of hours or even 999 because we aren’t doctors and you aren’t even formally diagnosed with RA and should not assume this is necessarily related. PMR is associated with GCA and can present similarly to RA. Best of luck. 😊

[Madmusiclover in reply to Hidden]

I wasn’t going to name it, but you did! 😉

[carleighsmum in reply to Hidden]

Iv been to hospital with this 3 weeks ago and waiting on urgent referral to ent as they have put it down to my sinues

[Hidden in reply to carleighsmum]

Well I hope they are right, The only way to diagnose or exclude GCA is to take a biopsy from your temple I believe. You could ask on the PMR community here if you want to make sure. It would be awful to have it missed.

[Helen-NRAS Moderator]

If you would like support, information or just someone to talk to, our NRAS helpline is open every week day from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.