Not really sure how to put this as I amnew to the posting side of this site. I have been diagnosed with cluster headaches but meds seem to have got rid of the headaches. I am left with very painful right eye which is sometimes feeling gluey but nothing visible.
I have not been diagnosed as having lupus as my bloods etc are normal. Having read lots of posts on here I do have a lot of the symptoms of lupus and am wondering if the eye thing could also be a symptom?
Any advice would be gratefully received.
Thankyou x
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Pastalasta
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It’s really tricky to know what is Lupus and what isn’t. I kept a diary of my symptoms over the years and when it got unbearable as things were occurring in cycles, I sought a private diagnosis as wasn’t getting anywhere with the NHS. Turned out to be Lupus and also more recently possible Behchet’s.
It started with a central vein occlusion in my right eye, in which I’ve lost the central vision field. No one could tell me why it happened. In the last two years I now have swelling above my eyelid on the right eye. Sometimes it’s painful and sometimes not. It’s very annoying though. I too developed headaches, around the same time as the occlusion which were diagnosed as migraines, these have also ramped up recently.
I’d suggest keeping a diary of your symptoms and if you have photo evidence of any changes that too and when you are ready ask to be referred to a specialist as you are concerned it maybe Lupus. In my experience the GP doesn’t run the detailed blood tests and it was only when I went private that more detailed tests were performed, which confirmed Lupus SLE in conjunction with all my documented symptoms and photo evidence!
It’s a battle which is hard to fight in terms of diagnosis, took me 18yrs! But evidence and documenting your symptoms should give them cause to investigate further.
I hope you feel better soon and get the care you need. ☺️
Could be dry eye, I would go and see a dry eye specialist. I have sjogrens disease with lupus and dry eyes, mouth, migraines and lots of other issues come with that. But an ophthalmologist or specialist optician would be my first stop. Dry painful eyes also often come with older age too so an eye check up is a must but if you have no other symptoms I doubt it's lupus.
Thankyou for your reply. I do have dry eyes. I have seen optician 4 times this year and he suggested I visit GP.I have joint and muscle pain too and the finger thing which gp thinks cyanosis not sure if this is a thing connected to lupus or not.
My experience includes some of the problems from both previous respondents. I have had migraines and complicated eye and sight problems alongside underactive thyroid and lupus for many years. It seems most people with lupus gather conditions and syndromes as they go so new symptoms and extra diagnoses are common.
I am now having CRVO occasionally with an increase in small migraines and a bit of a sore eye with occasional pain. This is being monitored at the Eye Clinic. I have treatment for glaucoma and dry eyes (due to Sjogrens) and eyes checked because I take hydroxychloroquine alongside other medication.
It is hard to get a diagnosis as lupus encompasses so much but noting all symptoms will help you to explain to your GP so keeping a diary as suggested by Beeswax is valuable. Also the suggestion from dg70 of an appointment with an optician is a good idea. The optical equipment they have can see much more than a GP can.
If you continue to have worrisome and debilitating symptoms it really will necessitate more GP visits with you pushing yourself forward and sometimes demanding treatment. Further or follow up blood tests may give your GP a reason to refer you to a Rheumatologist and things should progress from there if there are signs of lupus.
I hope for your sake it's not lupus as it's not an easy condition to live with. However, I do hope it's sorted for you soon. 🙂
Thankyou so much for your input. I do appreciate all the comments I have received. The optician was mystified and suggested gp who may refer to eye specialist.
I have both Lupus and Sjogrens Syndrome. Sjogrens can cause eye problems and damage. It is very difficult for me to identify which disease is causing a problem because they both have many of the same symptoms. In addition, I have MTHFR. That can also cause headaches. There are many variations of this genetic mutation that cause different symptoms for people. One of the things having MTHFR does is that it causes people to have an inability to process B vitamins. This is the mutation I have. Because of this I went into Complete Heart Block while in recovery from an outpatient surgery. They immediately inserted a pacemaker/defibrillator. When you do not metabolize B vitamins, homocysteine builds up in the bloodstream. Ongoing high homocysteine in the bloodstream causes heart disease, blood clots and strokes.
Oh my goodness that's a lot going on. Hope things settle soon for you. I need to look up the MTHFR and all the other things I haven't heard of on this site.
I note you are 69 years old from your profile so it may be worth looking up late onset migraine. I am 61 and was only diagnosed with these earlier this year - along with already diagnosed cervical migraine caused by referred pain from neck arthritis.
However if you’re looking for an autoimmune cause then you’d be wise to focus on autoimmune rather than just one rheumatic/ systemic disease such as Lupus. From symptoms you describe, both Sjogren’s and PMR/ GCA Vasculitis seem more likely. Maybe look these up and see if you bloodwork tarries at all ie raised inflammation markers, anaemia etc. In my case my autoimmune symptoms started when I was a child but kept morphing so weren’t diagnosed until my late 30s when I was found to have Hashimoto’s hypothyroidism. Looking back at photos of my thick neck and patchy scalp in my 20s and 30s, it’s amazing how long it took for this to get tested, diagnosed and treated.
Then, with menopause, came sudden onset of neuropathy and bilateral inflammatory arthritis, misdiagnosed as Rheumatoid. Then came dry eyes and mouth and diagnosis of Sjogren’s alongside Raynaud’s. Then came severe GI dysmotility and finally a very positive antibody for Systemic Sclerosis/ Scleroderma - the most serious one of this rheumatic family. So it took 12 years to a lifetime for me to be correctly diagnosed. However I was fortunate to be treated regardless. I also discovered last year that I’m hypermobile and this masked my Systemic Sclerosis from being identified by non specialist rheumatologists.
So as you can see from this reply and others - it’s much more complicated than “is this Lupus or not?” for many of us. I hope you get answers to explain and treat your symptoms soon. Migraine and visual disturbances are horrible.
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