I'm the ping pong patient! Eye problems but gp/opthamologist won't help

[marblesnottobefound]

I have EDS & was recently diagnosed with fibromyalgia. Rheumatology were screening for various autoimmune problems & as there wasn't enough inflammation present on examination, fibromyalgia was diagnosed by exclusion. Thankfully I didn't have any worrying antibodies, just a high rheumatoid factor.

Last year, after having covid, all my EDS symptoms worsened but I gained a new eye problem.

Once a month or so, one eye would be painful, red, uncomfortable, foggy and inflamed. I'd have cloudy vision, light sensitivity and angry looking eyes. I took photos & notes of frequency.

It became more frequent and affected ability to drive & work properly so I went to the GP.

The GP couldn't help so told me to visit opticians- I did.

The optician said that it's really important to have it checked out based on my description & photos but understandably couldn't help based off those alone. I was told to ask for an emergency optician appointment next time it happened.

The frequency and intensity has ramped up a notch & I've had problems with both eyes now for a week. I have red blotches next to my pupils and the light sensitivity is worse. I get intermittent swelling around my eyes where I look like I've had an allergic reaction. I'm on max dose antihistamines already.

I went to the opticians today, as advised, and asked for an emergency appt. I explained the history & was told "there's no point having an appt because we would only refer you to your GP anyway"

I asked if they could do that, hoping it would add more weight for me to ask my GP for help/further investigation. They couldn't & told me to speak to my GP "if it's that bad".

I have a GP appt tomorrow but am worried I'll end up in a never ending game of patient ping pong, that the GP will say "go to the optician"...

Getting my EDS diagnosis was hell on toast and despite having 3 separate doctors diagnose me, I feel like an imposter/hypochondriac. Being "pushy" helped me eventually but I almost feel like I've used up all my fight and goodwill with GP.

Do you have any suggestions of how to firmly ask for resolution other than sending me back and forth?

My optician routine visit found my eye pressure very high. I have had glaucoma for 20 years managed with drops. He immediately emailed the health board eye unit. The next day they phoned me with an appointment. The optician actually phoned me the next day to make sure they had been in touch. He saved my sight together with the hospital team. Six operations later I'm still seeing albeit with five different types of eye drops twice daily.

So I'm disappointed in your opticians mine is Boots. Get to an eye clinic ASAP

My relative paid for their own MRI scan of sacroiliac joint. It's awful how you have to keep trying to find out yourself to get a diagnosis. I hope you find out something soon. I'm awaiting my MRI results and doing another thyroid check this week. The pain clinic has suggested I try HRT which I've been refused by the GP twice now. It's an uphill struggle!

@justasking111 I'm so glad to read your sight was saved & you're doing well considering!

Thank you- you & others here have totally boosted my intention to be firm & get sorted asap!!

I’m happy to look to see whether it’s worth pursuing. Or I can recommend a Facebook site with some very experienced volunteer mods who are happy to look at your results(it’s Hashimotos 411….USA based but they are pretty hot on it in the USA)I hear you about the fibro…I have a cfs diagnosis which I pursued as I have had some really useful input from the specialist service locally and learnt to manage my symptoms much better ( am ex nhs myself hence I know it’s important to be really clear with what you are dealing with when you have a chronic illness as it can be hard to cope with never ending symptoms) but was very disappointed in my own go practises approach to my thyroid issues and obvious lack of knowledge so see a specialist gp who runs a thyroid practise privately to manage it.

@Stabee I feel your pain

Hope you get the results you're after & some sort of proactive plan in place if you can remember/be bothered please update me!

Yes will try to update. I'd be interested to hear how you get on too.

I get so cross at the NHS system that ticks a box for one ailment and ignores anything else that you might get. They say ah yes that'll be the arthritis. Well it might be that fall I had broke a bone so an x-ray would be useful. 🙄

OPs eyes may be totally unrelated to an ongoing health problem. You really have to dig your heels in.

I’m disappointed with your optician too!
i’d just find someone willing to see you during the inflammatory spells. Maybe just call local opticians when it next happens?

Some hospitals have dedicated eye A&E clinics. But check the times before you go as they don't tend to be 24 hours. I used to be a regular at St Thomas' and now go to Moorfields with uveitis. They are really good