Update for Sqad (Blurry Vision)

[Eve]

Well, more of a frustrated whinge I guess :)

So fed up, had blurry vision every evening this week getting progressively worse at it goes on and ending up not being able to see much and me getting really fed up and giving up and going to bed. Having my glasses off is a bit more relaxing but I'm so shortsighted I can't see then either and probably less strain as I'm not trying to see something then as I know I can't.

Still waiting for an appointment back at the eye clinic and nothing through yet.

Been trying stuff to help in case it's dry eyes or fatigue (been feeling really exhausted with it too), eye drops, eye rest... to no avail. Even this early I'm struggling to see and type this. They do feel swollen round the top of the eyeball when they are blurred and it hurts inside if I try to look up.

I'm a bit worried it's gone from random occurences a weekn then few weeks apart to every night,trying not to panic but my sight is pretty damn precious.

Seeing rhumatology Monday so will mention it then and think I'm going to have to give my GP another call though not sure if they can do anything as referred to eye clinic.

If you (or anyone) could think of anything else I could try to help it in the meantime I'd be really grateful.

[boxtops]

Jenna, can't you refer yourself direct to the eye clinic? - if I were you (and I realise that you have other things going on) can't you go to an optician instead of the GP? They would know more about eyes than your GP, while you wait for an eye clinic referral (surely?).

[Eve]

Hi Boxtops. Already seen an emergency optician who referred me to my GP who took me off meds they thought were causing it (not anymore though). When it came back after being off meds (week ago Thurs) GP sent me to emergency eye clinic at hospital and they said I need more tests and will snd me a clinic apt which should be within 2 mnths. That was before this week though. Thought maybe it was exhuastion or eye strain making it worse at first and would settle, esp as off Fri and no work today but still there, coming back on now (so apologies if no reply later on). Been reading a fair bit (50 Shades addiction!) though have to stop as it comes on. Blurry now but can see more by squinting.

[Euphemia]

Shouldn't you get back in touch with hospital and let them know that the situation is deteriorating?

[Sqad]

Thanks for the feedback, you need to be patient to see the Eye Consultant as it is not a straightfkorward problem.

[tonyav]

ummmmm, 50 shades of Grey ( note to self Jenna's a bit of a naughty girl ).

[Eve]

Tony ;)

Thanks sqad, I know, I need to bea good patient patient, it's just so disabling and making me panic. I will be bringing it up at rhumo mon (as reason for apt re coming off meds) and see what they think as regards whether I (or they) can speak to eye clinic - dreading the thought of it carrying on and een getting worse while waiting.

[Eve]

Bit of an update. Saw rhumo this aft and no more hydroxychloroquine until seen by eye clinic, she said my eyelids looked puffy (before the crying - see below - I should add) and usual causes relate to kidneys, liver and heart and mentioned hayfever. They feel swollen when my vision is blurry and it hurts a bit to look up but looks like it's lingering.

Had hands ultrasounded again and got stabbed in the bum with a steroid injection though so fingers crossed that will provide some relief. More bloods and another wee test done.

She went through some previous results though inflammation wasn't that bad when done (always the way!), ESR was up but only 46, complement up not down (don't understand that one but apparently means something going on but it can't be Lupus :)), and I apparently do have a rhumatoid factor. They are retesting Vit D to see if the treatment helped, especially with the bile acid malabsorption which could affect it.

Saw my rhumo nurse after who was fantastic (especially considering I had a good cry on her). Think it's all just been getting too much, going on for so long, especially living alone and trying to cope (and being crap at asking for help) and just so frustrated I can't seem to get a handle on all the stuff going on and new things cropping up and get on with helping it get better and trying to just bury things and by voicing it it just tipped me over the edge. She was great though and we made a plan of action which really helped.

Feel exhausted now so an early night for me I think!

[Psybbo]

Oh jenna, just wishing you well and I hope you get the help you need x

[Eve]

Aww, thank you Sibton x It's a godsend having this here, for the advice, support and just having somewhere to write things down which is quite cathartic in itself, good to get things out.

[Ann]

Jenna - Could it perhaps be Sarcoidosis, a rare condition similar to Lupus but not as bad. I have had this since 1992 and it manifests itself in many different ways, one of which is in the eyes - iritis? If you have rhumatoid arthritis trouble it is definitely connected to that. I'm lucky as its not in my eyes, but they used to test my eyes at every hospital minitoring visit. Worth mentioning perhaps? Hope it gets better soon.
http://www.emedicineh...m/iritis/page3_em.htm
also
http://www.iritis.co.uk/sarcoidosis.htm

[Ann]

* monitoring visit - sorry and eyes not even blurry:)

[Eve]

Thanks Ann :) I had a look but never had the kind of chest problems it talks about. Hope they find what it is and sort it soon or it clears up. Steroids kicking in and feeling much less inflamed and my eyes feel better too, not sure if coincidence for the latter but I can see better so that's all good :) They still feel quite swollen but at least my vision seems clearer.

[Eve]

Got my eye appointment through for just over a month's time too so can at least look to that.