Dreadful eye muscle pain

[SheffieldJane]

I have posted before about eye strain but this symptom is getting worse. It is even difficult to get to sleep because it carries on even in the pitch dark. It is like the very painful photophobia you can get with some fevers and there seems no way to get any relief except if I do fall asleep it is gone when I wake up. Any sort of head movement makes it feel worse as does light or attempting to look at anything for long. This is by far my worst symptom so far, it is almost like my eyes are going to burst. There is a cap like fuzzy headache with the eye symptoms. It's hard not to panic to be honest. Has anyone experienced anything like this?

I am a book worm but this is obviously curtailed now. I will trudge over to my bemused doctor tomorrow, I haven't much faith though. My diagnosis is PMR.

[DorsetLady PMRGCAuk volunteer]

Hi there,

Know you said in previous post that you had had recent opticians appt and everything okay, but it's obviously not if you have continuing and, it would appear, worsening symptoms.

Can't give you any advice on current symptoms, but would suggest you press GP for an appointment with local eye clinic, and 'make it snappy'. If you don't have any joy with that, then maybe a trip to local A&E is called for - they always have an Ophthamologist on call, and with your PMR diagnosis stress you are concerned that it could be GCA, and obviously you are extremely worried about things.

I know we shouldn't use A&E as a back up to GP, but sometimes needs must!

Good luck. DL

[SheffieldJane in reply to DorsetLady]

Thank you DorsetLady, if I get no joy from the GP I will go to A&E. I was travelling by boat and plane and car for 14 hours yesterday, nose firmly in a book. The rest of my body has served me well on my recent holiday. Why am I surprised that something is protesting?

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Ahh, that may not have helped!

Hope you get it sorted.

[SheffieldJane]

The hospital just rang and has given me a Rheumatology appointment ( my first) for tomorrow. They said that they'd like to see me pretty urgently. So finally I appear on the radar. Wish me luck! I know experiences with Rheumatologists have been mixed. This is James Maxwell of the Hallamshire Hospital. Thanks for being out there DorsetLady. Let's hope angel dust prompted the phone call.

[PMRpro Ambassador in reply to SheffieldJane]

I was just wondering if you were back - obviously you have survived!!!!

Hope tomorrow's appt goes well...

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Good luck for tomorrow. Remember to make a note of anything you want to ask just in case Rheumy doesn't cover it.

Please let us know how you get on.

[Bailybiscuit]

If you are on steroids these raise eye pressure and that could be an emergency if it is glaucoma. I have been told by opticians to go to A and E if I had problems. I did once and had laser eye surgery the same day. I have eyes that ache and are blurry a lot and the other day I was told it could be any of my conditions causing it or the steroids. I have pmr and inflammatory artheritis. I hope your eyes feel better soon.

[Ronnie101 in reply to Bailybiscuit]

I was referred to the emergency eye clinic by the optician because of raised eye pressure, and I'm still waiting for an appointment a week later, despite chasing. I'm having the same symptoms as you, aching and blurry now and again. Why did you have laser surgery?

[Bailybiscuit in reply to Ronnie101]

They make a hole at the top of the iris so fluid can escape. (Into the eye, not actually out of it). Mine wasn't really succesful so I have drops too. It didn't hurt and i was able to send texts by the timeI got back to the car.

[Riversnan]

On a lighter note, have you had a good holiday on Hydra and how did you get on with your mobility.

Good luck with your appointment I don't suppose all the stress caused by worrying is helping anything.

[SheffieldJane]

Thanks for asking Riversnan and PMRpro. Hydra is lovely. The Nordic sticks were a Godsend, halving the strain of climbing uneven winding steps up a cliff side. My husband envied me them. Resting in a disciplined way whether I wanted to or not paid off. The sun heating my joints helped the pain. I read too much and now there's the eye strain. Recently tested for Glaucoma and Retinal problems etc. Early cataracts spotted. Nothing to explain this horrible symptom. I expect it's darling Pred. again. I am beginning to think there is almost nothing I can't give up, even reading. Oddly liberating. I amuse myself in my head. X

[jinasc]

Brilliant that you took on board all the advice and bought Nordic Walking Poles. Now you are back from holiday - do not put them away in a cupboard, use them and walk for at least 45 minutes each day. Top exercise in the world, with swimming and aqua aerobics a close second.

Next year Mont Blanc (eye rolling)

[Ronnie101]

Was your pain resolved Sheffieldjane? I eventually saw an eye consultant who confirmed pressures high at 30, but not high enough to cause the pain and discomfort I have like yours. He thought it more likely it was the GCA, and not the pred. Told me not to worry about the effects of the pred (I'm currently at 30 mg). It was more important to control the inflammation. Prescribed pressure reducing eye drops. After 2 days of these I still feel my eyeballs are bigger than the sockets!

[SheffieldJane]

Hi Ronnie101, I was told by my Rheumatologist that it didn't fit for GCA because it affected both eyes. My optician did all kinds of tests and my eyes appear normal. I have just been told by the consultant that Fibromyalgia is also present making mischief in the background. As every symptom seems to sit under that umbrella, I guess it's that coupled with Prednisolone side affects maybe. I manage it by reading less and daydreaming more. Thank you for asking. It's horrible isn't it? We get so much confidently expressed conflicting advice too. I'm glad we have each other, go well!