Eye pain

[PuttyPenguin]

To all GCA people! In my determination to get fitter, I’m having problems with pain behind my eyes when I try to push myself a bit further. Do others have the same body-response when trying to increase their fitness? I can walk, briskly, up hills for about 20 minutes and then a further 20 mins on the flat and I’m ok. But walking for an hour on the flat, really makes my eye hurt and my forehead feel bruised for the next day or two.

This pain behind my eye was one of the first indications (missed by GPs) that I had GCA and later I went on to develop double vision. I was treated in hospital last November and, generally, I am getting better albeit a slow process. I’ve now reduced from 60mg to 20mg predisolone (an amount I’ve been on for 2 months) and I’ve always seemed to have had the same reaction when trying to increase my fitness level at every stage of steroid reduction. I have both PMR & GCA.

Your thoughts will be gratefully received.

[DorsetLady PMRGCAuk volunteer]

Primary exertional headaches happen for unknown reasons. But experts think it could be related to the narrowing of your blood vessels that happens when you exercise.

Secondary exertional headaches are similarly triggered by physical activity, but this response is due to an underlying condition.

You need to seek medical advise on this one - any headache should be checked - particularly with GCA.

I appreciate you want to keep as fit as possible , but your GCA is still very active (only 5 months in) , so you are in danger of serious flaring.

I know you started on 80mg in November, but you say you have been on 20mg for 2 months - can you advise your tapering regime - doesn't sound standard - that may be part of the underlying issue.

[PuttyPenguin in reply to DorsetLady]

Many thanks Dorset Lady, you have such a wealth of knowledge which I greatly value. Bless you! x

[DorsetLady PMRGCAuk volunteer in reply to PuttyPenguin]

Knowledge gleaned through hard times -and passed on in the hope that others don’t have such a difficult time! I know people don’t always want to hear me wittering on about they should or shouldn’t do - but all I’m trying to do is save their sight...and will continue to do so. 🌸

[PuttyPenguin in reply to DorsetLady]

Thank you! You are marvellous. I've just contacted the GP which, on a recorded message, advised me to go to their online consultation. I did that and at the end of it I was told to contact the GP! What??? I know there's a pandemic on but they really don't make it easy. I guess I'll just have to keep ringing until I can actually speak to someone.

[DorsetLady PMRGCAuk volunteer in reply to PuttyPenguin]

Bonkers isn’t it! I think it’s done to deter what they consider time wasters. When you finally get through, impress the sight concerns with GCA - and say you’ll go to A&E...that usually makes them spark.

Some GP surgeries have come through this very well...

others - need a ‘could do better’ report.

[PuttyPenguin in reply to DorsetLady]

We recently moved to Hants from London. In London, if we were lucky enough to get an appointment, the GPs were excellent. In Hants, I used be able to get a same-day appointment easily but they've misdiagnosed me twice and then issued me with the wrong prescription! It really is hard work! But again, thanks for your comments!

[DorsetLady PMRGCAuk volunteer in reply to PuttyPenguin]

Where about in Hampshire?- know it well, my birth county.

[PuttyPenguin in reply to DorsetLady]

Swanmore, SE of Winchester. Local docs are in Bishops Waltham. We didn't know, until we registered, that they had a bad reputation and that we should have registered with Wickham. Que sera sera!

[DorsetLady PMRGCAuk volunteer in reply to PuttyPenguin]

Can’t help you on docs these days. Born in village outside Andover - left late 60s when married - but still have family there.

Son born in Winchester when hubby based in Worthy Down in 70s.

When you can, must visit Mottisfont - Abbey & gardens now run by NT - but my mum was born & brought up in village and returned to family home during war with my older siblings (not me!). Grandparents ran the family bakery, shop and post office and lived in biggish house nearby - which I think once was a pub.

[PuttyPenguin in reply to DorsetLady]

How fabulous. I have been to Mottisfont as we're members of NT. Really nice area. But there again, so is Dorset. Planning to go to Dorset in May in our motorhome. Be good to get away.

[123mossie in reply to PuttyPenguin]

I think I'm right in saying in England you can change gp quite easily unlike us in Wales. The infoshould be on the Internet.

[PMRpro Ambassador in reply to 123mossie]

You do have to find a practice that will accept you to do so though.

[PuttyPenguin in reply to PMRpro]

Yes....I am a bit undesirable! Meanwhile...many thanks to you all. I've spoken to the rheumatologist and GP and both think that it's migraine! Had blood test today so will find out if the levels are ok and if so, over to the GP to see what he can give me for migraine.

[SnazzyD]

Hello there, before GCA at 54 in 2017 I was fit and very active. I wasn’t doing anything like the activity you are doing once on Pred. If I overdid it, I felt vaguely unwell and odd in the head, tinnitus increased and I was aware of my temple but it wasn’t pain. Overdoing it amounted to bending over weeding for 10 minutes or doing my daily 2km at more than snail’s pace. This lasted for 6 months then something changed inside and I felt different but by that point my muscles were affected by the Pred and I had to watch out for damage. Personally, I don’t think this is a time for trying to push the body into staying fit like one would normally, but listen to what it tells you. This isn’t like getting fit after a week in bed with flu; you have autoimmune activity going on and a powerful drug that doesn’t do favours to muscles and ligaments. It’s annoying but that that’s the way it is. Later on, when on low doses I ended up with tendinopathy with my Achilles the worst which I think was a delayed Pred effect. I am just about ok now (stopped Pred in August 2020) and almost exactly 4 years down the line doing strength exercises to be strong enough to enter a gym. We’re all different but tread carefully and listen to any symptoms that sound GCA related.

[PuttyPenguin in reply to SnazzyD]

Thanks SnazzyD! Your advice and the story of your journey is really valuable. x

[PMRpro Ambassador]

Suddenly adding another 50% to the amount of exercise is an awful lot in the context of a/i disorders in general. If you tried building up slowly, adding, at most, 5min at a time over a period of weeks might allow you to get to the longer walk without payback?

[PuttyPenguin in reply to PMRpro]

Thanks PMRpro, your advise is always welcomed. I guess as I used to walk/run 5 miles, I am getting a bit impatient with myself. Once I've recovered from this 'bout' , I shall do as you advise. Many thanks for taking the time to reply. Bless you! x

[PMRpro Ambassador in reply to PuttyPenguin]

It's what we do ...

[AndrewT]

Dear Photojournalist,

I Don't Know, too much, about your Specific Condition- I have Vasculitis myself- but 'Eye Pain' needs to be Thoughly Checked...no REALLY!

IF it's 'Nothing', or Part of your Condition, then OK.... At least you 'Know' what your Up Against. I'm Sorry that I can not 'Offer you any more help Photojournalist....apart from my

Very Best Wishes

AndrewT

[PuttyPenguin in reply to AndrewT]

and Andrew you're best wishes count for a lot! Bless you! I have already called the GPs and the hospital helpline.

[Judyliz]

Delighted you have followed this up and have a plan to follow. I have PMR/GCA diagnosed in 2016. I am now taking 2 mgs prednisolone daily down from a high of 60 mgs. Just an aside comment, I have to wear sunglasses regardless of the sun levels when I am out walking, the wind is also a major problem. Prior to diagnosis I rarely wore them finding them to be a nuisance. If I don't I too have considerable pain behind my eyes.

However I think DL's explanation of exertion etc is more appropriate for you at this stage of your journey.

For information, there is an active Ramblers group in Bishops Waltham and another in Eastleigh. They are restricted at the moment but no doubt raring to go when allowed. Also lots of Park runs around.

My husband and I walk 🚶regularly and last year I thought it's time to up your game old gal...

I joined the C25K (couch to 5 kilometres) group on HealthUnlocked and did all the right things and was thrilled, I managed the first 3 weeks and then developed shin splints. Collapse of stout party, I am going to stick with walking.

[PuttyPenguin in reply to Judyliz]

Thank you for all of this, Judyliz, very helpful! I did the C25K over a year ago and was very happy until I got sick! I feel that once I've got these migraines sorted I'm going to feel a lot better. Getting older is easy is it? As Bette Davis said, 'Old age is no place for sissies' . So pleased that you've reduced to 2mg - you're certainly on the mend as far as the disease is concerned. Wishing you a full recovery soon. x