Painful eyeball

[EastMidsLass]

I have had a painful eyeball for a few days. As I have polymyalgia rheumatica as well as fibromyalgia I went to GP pronto. He had a cursory look and said "your eye is slightly inflamed I will give you some antibiotic eye drops " I also went to see an optician who was very dismissive and couldn't understand why I had come to see her after seeing a doctor. I explained that she was able to give my eye a more thorough exam. She couldn't find any infection or problems with my actual eye, good news. My eye is still painful, like I have bumped into something. I am wondering if it may be a fibromyalgia thing as my cheek bone on that side is also sore. Any thoughts?

[Loonywoman]

Good morning Your post immediately piqued my interest. I started suffering from chronic fatigue and random pain in July 22. Then, in November 22 a pain in my left eye socket began. Blood tests eliminated under active thyroid but detected Vit D deficiency. I have taken vit D supplements to stave off fatigue since Dec 22. Like you I immediately went to the optician and paid for the additional image of the rear of the eye. All normal. By Sep 23 I was finally referred to opthalmology. Comprehensive tests revealed healthy eyes so trigeminal neuralgia was suggested. I Googled it and my pains are not like this. Ophthalmology referred me for an MRI . 4 months waiting list so I paid for a private scan. A tiny anomaly was detected adjacent to my trigeminal nerve. A neurology referral in Jan 24 literally made me weep as the doctor had not even seen the MRI images. I waited another 3 weeks for a phone call after the multi disciplinary team had viewed the images. The anomaly might be an inflammatory lesion but they wanted another MRI 6 months after the first one to see if the thing had grown. Because I also had comprehensive bloods taken they could, at least, say it wasn't malignant. Six weeks after the second scan in April last year I had a letter to say it hadn't grown and I would get a follow up neurology appointment. I waited 6 months for this, still with 24/7 eye pain. When neurology rang me last December it was simply to discharge me because they didnt know what to do. He said he'd askfor a rheumatology referral as my other symptoms sound like fibromyalgia. Then, out of the blue I got a video consultation with a neuro surgeon who was amazing. He had my MRI images on his screen. I have a vein touching my trigeminal nerve. However, he, like me, does not think I have trigeminal neuralgia as my pain is not typical. I have had masses of dental work in that region but he didnt think it would cause eye pain. He could operate to move the blood vessel but he does not think it is causing the pain. Back to square one. My GPs, I never see the same one twice, have tried Tegretol, Amitryptilene, Pregabalin and I'm currently 1500mg Gabapentin per day to alleviate pain. The side effects of all of them in my opinion outweigh the minimal pain relief that I get. My brain fog at present is scary. I was beginning to think I have dementia. Saw my GP on Friday, armed with a letter that I wrote 8 weeks ago with the history of the past 2.5 years and begging for help. I emailed it to the surgery in the New Year and it was never attached to my notes. After she read it, she was much more sympathetic. She is weaning me off all my current medication and is referring me to maxillo facial to see if the dental work, or something structural is to blame for my eye pain. I didn't want to stick out my neck too much and ask for the rheumatology referral as well because my GP thinks coming off the drugs might ease the fatigue, muscle stiffness and pains. One baby step at a time. But chronic pain for 800 plus days has been no fun. I really empathise with those of you with a fibromyalgia diagnosis.

EastMidLass I wish you luck. Let us know how you get on.

[EastMidsLass in reply to Loonywoman]

Hi Loonywoman,

Thank you so much for your reply. My optician has ruled out anything to do with the eye itself but the left hand side of my face causes me a lot of pain radiating (sometimes but not always this is the thing) from my scalp to my cheek bone and jaw area. I have definitley lost muscle on the left hand side of my face and my skin is markedly more wrinkled on that side (a woman knows). I have had ocular migraine for around 60 years and it always originates over the left eye. My eye today does not hurt to touch as it did a couple of days ago and as I have been putting the antibiotic drops in which were prescribed by the GP I have no way of telling if it has resolved on its own or with the aid of the drops, I intend to complete the 5 day course of eye drops and if the pain returns we can assume it was not an infection but something else.

My experience of fibromyalgia is that my pain is transient and moves around my body but primarily is in my lower body. I have a lot of fatigue and you will appreciate I don't mean I get tired! The brain fog is another thing all together and along with a definite reduction of my dexterity I struggle a bit some days. I am sorry to hear that you eye pain has been with you for such a long time and I do hope that you can get some relief very soon. At present I am not on any medication for my pains as I am awaiting an appointment with the pain clinic. Amitryptilene was initially prescribed but due to Atrial Fibrillation I cannot take any of that family of drugs.

Once again thank you for you interest

[AHOB]

I had a stinging pain in my left eye, which coincided with recent dental work. I had an NHS eye review, which could find nothing wrong. I looked at YouTube videos for jaw pain and used a number of them to mobiles the jaw and help the pain. The most effective treatment was the use of a smaller then standard, gradually increasing sized wine cork or champagne cork between the top and bottom front teeth to help open the jaw on both sides. Holding the jaw open with the cork in place for 2 minutes is essential to realign and relax the fascia. My eye pain has disappeared.

[EastMidsLass in reply to AHOB]

Hi AHOB,

Thank you so much for that advice. This is why a forum like this is work its weight in gold. I will definitley try that. I will have to ask my local pub for the cork though, I don't drink😀

[EastMidsLass in reply to EastMidsLass]

Worth, I mean worth

[AHOB in reply to EastMidsLass]

Ask the pub for several corks so you can cut them down to size as you gradually realign your jaw. Eventually I found the slightly larger champagne cork became the right depth and size, but it will depend on your teeth and jaw. I hope it helps

[Movi16]

I don’t have any answers unfortunately, but I’ve literally been experiencing the same thing over the past week or two! I was rubbing my eye, not too aggressively or anything and got a twinge of pain. I thought maybe I’d caught a nerve or bruised it. It happened a few more times. Then the socket was hurting when I looked around as well as being sore to the touch. Then the cheek and nose became sore too. Suddenly it seems to have all disappeared before I’ve managed to see anyone about it.

I am prone to sinus problems and allergies, so I’ve mostly put it down to blocked passages. I also get a lot of stabbing headaches and migraines. But I get so many new fibro symptoms all the time, so perhaps it’s related?

[EastMidsLass in reply to Movi16]

Thanks Movi16,

I figured it was probably fibro related but I am newly diagnosed so I didn't want to assume. There is a lot to take in isn't there.

[Sarahvit]

I am not sure what this is? I have been experiencing it in both eyes especially in the afternoons and evenings. I have been told I have dry eyes. This is something I would say has been more bothersome in the last few months. It is also coupled with pressure behind the eyes and nasal sinus pressure. Also for lack of better term “sinus scab” in the back of my throat and top of upper palate. This is especially bad after eating evening meal. Sometimes I am able to clear out part of the “sinus scab” out which is brownish green in color but I still feel this hard “sinus scab” in the top back of my throat. Also this has led to horse voice and need to drink water or suck on hard candy. Also my voice will go out on me in afternoons especially when talking to people on the phone. I did run across an article that mentioned Sjögren's syndrome which I remembered it as a condition that tends to go along with fibromyalgia. I have not really investigated it but remembered back in 97 at a twin study on fibromyalgia in Seattle WA the investigational doctor wanted to test my healthy twin sister and I for this but we were wimps and couldn’t stomach the thought of having a litmus paper stuck in our eyes. So I am thinking that maybe Sjögren’s syndrome could possibly be what is causing this. I did just finish up a course of antibiotics to treat the sinus infection but I really didn’t notice a significant improvement. I did see the eye doctor and asked him about TED. I had seen that mentioned in an add on an unrelated article. My thyroid levels had been high for the last year which my thyroid was removed in 2005 due to thyroid cancer. He said my eyes looked good and that I didn’t have TED. The only findings were dry eyes and early stages of cataracts. So I have held off on jumping to conclusions on any other diagnosis because I was already feeling like a hypochondriac with all the other issues I have been experiencing in the last year and a half. I even wrote down all the pieces of the puzzle but it just overwhelmed my neurologist. I don’t know how many “dear doctor, please help me” letters. I hope you are able to find out what is causing this eye pain. Please let us know what you find out.

[Labradoodlelove]

I read your message with great interest as I also have been suffering with left hand side eye pain, it gets so severe sometimes right in the eye socket and surrounding areas. Two years ago I had a thorough eye test and he said it was bursitis so gave me eye drops and told me to get a heated eye pad. The eye drops don’t seem to do much but I must admit when I use the eye pad it does feel easier for a short while. The eye pad is a hot and cold one so you can either pop in microwave or freezer. Honestly I really do think fibro gives us separate issues, even my dentist said the pain I get in my teeth is related!!!! It really sucks 🤯😤