lupus and eye pain???

Apart from the diverse symptoms of this evil disease ,im really struggling with my eyes,pain light sensitivity,vision disturbance ,eye test was normal at optician ,its really getting to me ,any advice guys??? optician said classic symptoms of optical neuritis, I've told thge neuro and just waiting for him to respond. feeling very low and yukky after a transechocardiogram today ,tube down my throat with camera to look at heart. hope everyone is doing OK . thank you , Brave


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27 Replies

  • I am sorry, brave, sounds like a rough day. That trans echo thing sounds awful, but they will certainly get a good look at things and should answer some questions for you. I have had a lot of pain around my eyes, with a lot of headaches starting from orbital pain and across the bridge of my nose. That pain has been more intermittent in the last few weeks which has been a relief. I did recently have what felt like a very thorough eye exam and all was good. I still wake up with red eyes in the morning though, sometimes just one, sometimes both. This morning my right eye took a while to wake up and was blurry for about half an hour, but fine now. Maybe I am just getting old, I don't know I have never been this old before!

  • i also get the bridge of nose thing???whats orbitol pain please,what have you been recommended,thanks

  • Hi brave, I have a lot of left eye pain. I have experienced this since onset of my illness. I get a painful pulling at the back of the eye and also experience a lot of left sided headaches and during a flare my vision is affected on that side. I have always put it down to another affect of lupus.

  • thanks so much

  • Brave, when I say orbital (maybe I am using the wrong word) I mean pain from my eyebrows down to my cheek bones, all that area around the eye sockets. It aches and feels like you have to squint all the time, and I find myself frowning a lot which is making the vertical crater on my forehead even deeper. I want to ask my Rheumi about Botox but seems so vain and trivial, but you are right field, I never had this pain before my first flare. Hope you are feeling a little better now brave.

  • I get the same pain chapter,it sucks and my lines are beyond botox lol

  • I'm sure they've checked for this but I get a lot of eye pain due to Sjogren's Syndrome. If you're not familiar it might be worth reading about that to see if it has any thing to do with it.

  • Shannon b thanks ,,,I do have sjogrens

  • Hi Brave, I have lots of problems with my eyes, like you I have light sensitivity, usual dry eye thing, drops don't help that much, had tear ducts 'plugged' several times with little plastic plugs injected into them, can't say I noticed any change, eyes permanently red, look like the bride of Dracula! Quite often I get a more obvious redness, like a bleed in my eye, usually preceded by a severe pain, recently I have woken up with a 'black eye' as if I'd been punched.Sometimes I just get sharp stabbing pains if i move my eyeball.Been attending the eye clinic for a long time, lots of tests, different doctors have given me varying diagnoses, from 'getting old' (I was 47) to imminent blindness through vasculitis! One 'old school' consultant who didn't really seem to understand lupus told me to just press a hot flannel to my eyes, next time he wanted to put a hot wire into my tear ducts to seal them!Another very enthusiastic young doctor who gave me a really thorough exam said I had a problem which could result in blindness, and required major surgery(I said I'd 'wait and see' and beat a hasty retreat!)another wanted to stitch my eyelids closer together to stop my tears from draining away, another said it was all down to taking steroids for 30 years, all my tissues are very fragile, which does make sense, but there is nothing anyone can do about that. I don't know what to expect when I go for my tests, what will they come up with next! At the end of the day, nothing any of them have said or done has been of any help or alleviated the symptoms. I don't have confidence in any of them, so many different diagnoses, they can't all be right! As eye problems seem to be a major symptom, it's not very good that there seems to be a lack of understanding or treatment out there!

    p.s. yes, I too could do with a shot of Botox, I must look so bad tempered all the time with my frowning- do you think the NHS would go for it?( hollow laugh)Best wishes.

  • I have Scleritis, severe inflammation of the white sclera of the eye, goes deep into the eye. Warning signs of an imminent attack in on or the other eye is a feeling of bruising around an area of whichever eye. Then the pain and inflammed redness appears, the horrendous light sensitivity, from general light, daylight, tv light, phone screen, mirror reflection etc. Movement of the affected eye is painful as the muscles are also inflammed. pain in face, jaw, teeth etc along that side although painkillers every 4 hours keep this under control and whopping up my prednisolone to evil person levels eventually gets rid of an attack, although this can takes weeks! Sometime the pain is so bad it makes my eye flicker and stream which then makes the opposite eye respond in sympathy! There is the lesser version called Episcleritis which isn't such a bad attack. Important to be diagnosed as the sclera can become thinned in the eye, resulting in loss of the eyeballs fluid and consequently your eyes. Don't know where you live, but i got my diagnosis from a proffessor at Moorfields Eye hospital in London. x

  • Hi Brave, chin up sweetie I hope today is a better day, when my eyes are giving me a hard time my G.P. prescribes me Viscotears - when I first had them I had a terrible job getting the drops in my eyes and would end up with them all down my face but have sussed out how to do it now and have found them really helpful with the dry scratchy feeling and just general relief when my eyes feel rough and they don't look red like I have had a rough night and need some sleep.

    I can sympathise with the tube down your throat I know how unpleasant it is, I was given a glass of water to drink to help a camera down mine, I am sure the nurse now wishes she had been standing to one side of me! :-o How embarassing was that???

    I sincerely hope that you hear from the neuros soon and something can be done to make you feel more comfortable, I look forward to hopefully seeing positive updates sometime

    Madmagz x

  • Brave, I dont know where you are based but dont just hope the optician is correct.

    I had excruciating pain behind the eyes a while back. I went to the optician who said all was in order.

    The pain persisted. As I am London based I went to Moorfield's eye hospital. They found bi-lateral retinal haemorrhages

    If you believe that you have not been given a proper answer, you need to seek further advice from a more qualified source..

  • Found an excellent optician who took my symptoms seriously, one thing he noted was 'poor quality tears' (how sad does that sound?) He suggested I put LacraLube in my eyes before I go to sleep, success I no longer experience that 'sand in the eyes' feeling in the mornings.

    The pain in the side of my face was a stigmatism that had not been picked up. As always finding a good specialist is the key and don't be afraid to go elsewhere if you are not happy.

  • Hi i get a lot of eye pain i were glasses now to due to medication affecting my eyes but its frustrating , i get very bad vision and cant even watch tv or use the computer so i just go of to bed till it passes sometimes longer than others the most its lasted for is 3 days Unfortunately i get told its the lupus,

    Hope you feel better soon

  • Eye pains THE WORST! My scleritis pain is awful and affects the while side of face, jaw, every tooth, whichever side is being attacked. No fun at all as I know the only thing is handfuls of the evil steroids followed by me being miserable, bloated and an awful person to live with. Hope you get sorted and get some answers from all your awful tests. It's never one thing at atime is it? Time to find some inner strength and a smile in the face of Lupus. X

  • Hi MandaM. You have summed up one of my big problems which is awful pain in the left side of my face which affects my jaw, gums and all my teeth become painful and sensitive. I am awaiting an appointment with the dental hospital. I have seen them before about mouth ulcers but I really don't want to be put on steroids. I was given a steroid mouthwash to use which is ok because I don't have to ingest it, only rinse my mouth when I am having problems. To be fair it does work in easing and clearing up the ulcers. My jaw is a different problem and I think it may well be arthritis in the jaw hinge as it is only on the left side but the pain and vicious headaches that come from it are awful and it will be good to finally have it looked at by a professional, although I suspect that little can be done. Thank you for highlighting this particular problem thus enabling me to voice my own worries on this point. Best wishes to you. Gabs.

  • Hi Gabs, the dental pain i get is because of nerve inflammation which travels into my face etc. it goes when i take painkillers, well for a few hours anyway! Ive had a mouth eating virus in the past, my goodness that was awful. Ulcers, holes through my tounge, roof of mouth all flobby, bleeding, rotting flesh smell. That was so bad, although upside was massive weight loss from not being able to eat. I hope you get sorted soon. Any type of facial pain is unbearable. x

  • Hi MandaM. You are quite right about facial pain being pretty unbearable however your problems make mine pale into insignificance. I am afraid I cannot boast a massive weight loss but eating is very uncomfortable and jaw crunches which is why I think it is arthritis. However should be seen by dental hospital shortly when they can tell be what is really happening. Thank you so much for your comments and I hope you are having a good day. Gabs.

  • Hi Brave, I have lupus & sjogrens. I also get a lot of pain in my left eye, only an hour or two after waking that eye feels like it is so tired & sore. I also wake up with a black swollen eye about once a fortnight, but that's usually just my right eye!! I hope all your tests go well x

  • HI, I have got lupus & Raynaud - Now Eyes pains, I thought I was the only one, it is so irritating!! dry eyes, sore and sometimes as if got sand in the eyes and I have just change my glasses which doesn't help in this case!!! Always want to keep them close as it gives me bad headache also.

  • can I ask if you get stabbing pains behind the eyes?and on movement ?and complete intolerance to light?

  • Hi, yes when I am too tired (very often) I had bad headaches and I become intolerant to light and had done an MRI for my head also, I though it was migraine which was giving me this dry and saw eyes. Its been only six months that I have changed my glasses - without any help!!!

  • Hi,

    About three months ago started with a head pain and pain behind the right eye when I closed it. Head pains went after two weeks but have left me for the last few months with an unpleasant pain behind the eye when shutting it, but quite oddly now occurs almost only in the evening.

    Both eyes are sore. As this tallies with my joint pains being much worse in the evening too, I have connected it with that. Tolerance to light has not been affected. Hope yours improves soon.

  • thankyou riverbird

  • Riverbird, I could have written your post. I have exactly this. When my eyes get worse I know my other symptoms are going to as well...and it has been every evening lately.

  • I know exactly what you mean about pain from the eyebrows down to the cheekbones. I have a marvellous thing, a Sterimar spray, which I use night and morning. You can use as often as you like and it isn't 'medical' it can be bought over the counter as all it is is sterilised sea water. You can also get it on prescription. It works. I have had this illness for nearly twenty years and believe me I've tried everything. I can honestly say it is marvellous. You can spray for longer to wash out the sinus area or just a short spray, whatever you want.

    I am hypersensitive to light and have the driest eyes imaginable. I have to use Hypromellose every hour and find that the 0.5% suits me best. I also have Lacrilube ointment which I put in last thing at night to stop the soreness and keep the eye lubricated. It's messy and a nuisance but it does help. There is also a gel, Viscotears, and I keep it in the fridge to give me a nice cool feeling when I use it.

    If the light affects you badly and you put off the big light when you watch tv please do try an amber coloured bulb in your lamp. Amber is the most restful for the eyes. My friend in Cornwall worked for the blind association and told me that tip. Also, indoors wear some kind of sunglasses as well as outdoors. Maybe some not so dark, or just clip-ons if you wear specs. My favourites for indoors are pink tinted as they are more restful for my eyes. I look like an old hippie (I'm ancient) but I don't care.

    I do hope that all the people suffering with sore painful and light sensitive eyes are getting products to use because you need to be careful about that in case you get an ulcer in the eye. I hope some of this rambling helps. Kind wishes, Carol.

  • Great tips ;))))thankyou

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