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?

Does a local hospital have an eye department? If I'm honest, and I may get flamed for it, I'd be temped to turn up at A&E next time it flares up. You can't just keep being bounced around without an investigation / resolution

Yep... turn up at a + e at a hospital with dedicated eye department during the day when clinics are running..no reason you should not be seen properly by specialist.

@WeeOrcadian I'd never even considered it as an option! When I googled eye hospital (wasn't even sure it was a thing) it seemed like it was only for emergency injuries & not something potentially chronic.

I'm getting so tempted to be honest

@Bonbon21 ahh thank you- I'm tempted if this appt doesn't go well. I've tried following their advice but it's not helped so far

https://primaryeyecare.co.uk/services/urgent-eyecare-service/

turn up at a + e at a hospital with dedicated eye department during the day when clinics are running..no reason you should not be seen properly by specialist

Do take a book and lots of snacks though. DH is a regular at our eye dept and they regularly run 4 hours behind because they give everyone the same appointment time then just slowly work through them. Even people who have urgent on the day referrals by opticians due to troubling issues (like DH!) spend hours and hours waiting.

Ask to be referred to opthalmology at the hospital.
Similar happened to DS1 over the pandemic- he had a sore, inflamed eye for months and it went like this:
First phone appointment with a GP- "wait and see if it goes away" 🙄
First in- person appointment with GP (it was actually for something else potentially urgent, but I managed to ask about the eye at the same time)- "Mmmm, don't know- maybe go to the opticians, where they have the machine to look at his eye close up?"
Opticians appointment- they looked with the machine and found nothing.
Second in- person appointment with GP: "Hmmm, have this antibiotic cream prescription, come back if no change".
(No change) Third in- person appointment with GP: referral to the paediatric opthalmology A&E (yes, there is such a thing!) at the hospital.
At the hospital: the consultant looked at his eye through her big machine, and, within about 10 seconds found a foreign body nobody else had spotted, and within 30 seconds had flicked it out with the end of a needle.

He immediately felt better. After nine fucking months 😡

Rheumatoid arthritis can affect your eyes this way. Your rheumatologist should have referrred you to an eye hospital (at least this is what happened to my daughter when she saw a rheumatologist). Ask for a re-referral to the rheumatology team.

@SiegeOfBees thank you! Just going to read now

@SiegeOfBees thank you again, very helpful!

Go to your nearest hospital with an urgent care eye dept - that's where your GP/ optician is likely to send you anyway.

@crackofdoom omfg. I'm so glad it was resolved for your poor DS but what a fricken nightmare for you!

9 months... yikes. Although typing this, I've realised it's been 10 months and I'm no further along. Here's to hoping some fancy machine finds the cause of this & I can stop whinging

Find out where your local eye hospital is. I’m between The Prince Charles eye unit in Windsor and Moorefields in London. Your optician should be able to tell you where your local eye hospital is. Check they have an A&E, I think they mostly do and when your eye next flares up head there. Good luck.

@Icannoteven thank you - seems like a good idea. I left my (long awaited) appt feeling like a total fraud with a fibromyalgia booklet & best wishes. A huge part of me feels there's something more to it but I'm no doctor...

@Spcd @Lovepeaceunderstanding thank you both for your great advice

Eye hospital, immediately. Via A and E if necessary. I too had similar symptoms. Was in terrible pain. Turns out I had uveitis, which at its worst can cause very serious damage to vision. Also linked to an autoimmune condition that I didn't know I had at the time (got the diagnosis on the back of recurrent uveitis investigations).

It's frankly scandalous thaf rheumatology haven't referred you to the eye hospital

@Restlessinthenorth thank you - my eye symptom wasn't active during my rheum appt but I did show pics. I took from that he must've thought it can't be that bad

I have been worried about uveitis because of the potential damage so acted fast but without any success

@marblesnottobefound have they excluded thyroid problems and Sjögren’s syndrome…..just because fibro is often a default diagnosis when actually the person has an autoimmune condition.likewise the annoying thing with autoimmune conditions is how often symptoms come and go!

@holaholiday thank you for your wisdom!

I was tested for Sjogrens antibody & was negative. I've got positive TPO re: thyroid but normal TSH - endocrinologist refused my referral because the results were fine. (Also my GP referred me saying "she is worried about hair loss..." but didn't list any of my biggest, disabling symptoms )

Endocrinology said positive TPO isn't enough to warrant a referral. Have got family history of Graves' disease & thyroid cancer so thought there was something worth looking at but clearly not.

If you are positive for antibodies then you have Hashimotos thyroiditis!!!!Have they tested your T3 and T4 levels, often the nhs tests only tsh and t4 and they also go by outdated levels/numbers…if you are in USA they tend to start treatment at a lot lower threshold……here they basically wait until you get progressively poorly and your numbers reach the “magic “level. There’s lots of info out there on the web….you could also Google the autoimmune protocol as dietary change can improve symptoms.I’m hypothyroid and likewise had historically had lots of eye problems and body pain ( both common with thyroid disease)hence why I thought I’d mention it. Likewise I have family history for endocrine problems. I do recommend looking into it as nhs endocrine care is notoriously poor and it’s best to tackle it before symptoms worsen….once you have 1 autoimmune condition you tend to get others (my gran ended up with 3)

Medichecks do a good thyroid test kit for about £70. It's a finger prick one you post back. I have similar issues. Optician has given me blepharitis treatment. I don't think that's the issue but I'll try it. I've been on the verge of turning up to the eye a and e. Do you have any back pain? I've paid for a private MRI as a relative has ankylosing spondylitis. Uveitis is a symptom apparently. But I'm in the fibromyalgia bucket , yet convinced I have something autoimmune going on that meditation isn't going to cure.

@holaholiday !!!!!!!!!!

Seriously, thank you.

I explicitly asked if positive TPO = hashimotos because I had a private thyroid test & during the consult they said yes. I took the info to my GP who refuted it & refused my test results. Because the endocrinologist refused my referral & my GP said +TPO does not equal Hashimotos, I never pushed it. The Rheumatologist I saw recently also said my thyroid is fine, even considering the +TPO.

I'm so confused but I'm glad you've mentioned thyroid etc.

@Stabee back and hip pain is one of my biggest complaints!! I had an X-ray just this morning. Ironically my pain levels & inflammation always seem to be best on the days I'm examined

My DP has AS & pushed me to discuss my eye problems because he's been warned about uveitis & how bad it can be if untreated His inflammation markers & test results were all much lower than mine are currently yet he was diagnosed instantly. Meanwhile I'm feeling like fibro isn't the full answer and it's taken me years to get this far...

I’m seriously peed off on your behalf…It would obviously be very wrong for me to say for definite,but they’ve not given you any other reasons have they?I agree it may well be sub clinical but to deny there may be any link when actually you are symptomatic with some classic thyroid symptoms that is really poor. Do you have your results handy?

@holaholiday I hear you- I've just posted about my DP having lower inflammation markers & fewer symptoms yet he was diagnosed (& is thriving off his treatment) almost instantly.

This combined with my experiences makes me think I'm a total hypochondriac or that all my symptoms are being pinned to EDS whereas it could be EDS + autoimmune issue. Fibromyalgia felt like a way to shut me up really.

I have results handy but all the ones marked "abnormal" or out of range have notes saying "not clinically significant"