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A MyFibroTeam Member asked a question 💭
San Francisco, CA

Just curious if it's a Fibro phenomenon or not. Some call it a retinal migraine. The frequency of mine has gone up significantly.

May 18, 2025
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Answer Summary

Members connected over the question of whether painless ocular migraines with flickering vision are linked to fibromyalgia, sharing a wide... Read more

Members connected over the question of whether painless ocular migraines with flickering vision are linked to fibromyalgia, sharing a wide range of personal experiences with visual disturbances like 'sizzle vision,' kaleidoscope effects, and pixel-like movement. Several members described these episodes as aura warnings before full migraines, while others noted their occurrences seemed unrelated to fibromyalgia, and many encouraged seeing an ophthalmologist to rule out other causes. A recurring theme was the importance of self-advocacy, finding doctors who listen, and leaning on community connection to make sense of confusing and sometimes frightening symptoms.

A MyFibroTeam Member

I would see the ophthalmologist ,just in case. I had that. But it turned out, not to be fibromyalgia related. 💖🤗

May 18, 2025 (edited)
A MyFibroTeam Member

I have had ocular migraines before, yes. I think in general migraine is a pretty common "comorbidity" with fibromyalgia.
I hope you manage to get help so that the frequency starts to go down! There's such a lack of neurologists who specialize in migraine, but my primary care doctor has been wonderful at helping me.

https://www.moregooddays.com/post/fibromyalgia-...

Breaking the Link: Effective Strategies for Managing Fibromyalgia & Migraines
Breaking the Link: Effective Strategies for Managing Fibromyalgia & Migraines
May 18, 2025
A MyFibroTeam Member

I experience ocular migraines, but my aren't painless. Painless with Aura? sounds scary! I've had one aura and it was creepy and pixilated. I'm not sure if it's fibro related, I think it's great you're trying to figure it out and put the puzzle pieces together. A specialist might be able to help, sometimes they put their interests on their bios on their website if you choose to look them up. Sometimes I read the reviews too, incase someone shares something similar to what I'm experiencing at the time.

May 20, 2025
A MyFibroTeam Member

As far as I'm concerned, it's not a fibro thing . I can get flickering if I look at Venetian blinds too long when it's sunny . I stay in a dark room and keep my hands cupped over my eyes until it goes away. I get something worse if I look at Blue Light too long. I used to watch TV way too much and one night the light from the TV literally flew across the room into my eyes like something from a Space movie and everything was bright and I turned off the TV
. It was midnight. Obviously there was no sun out but the whole room was lit up with bright light. It was very scary because the extreme brightness did not go away until sometime in the morning. About a month later I was looking at the PC for a long time and a shade came half way down one of my eyes for a short period of time. When I saw the cardiologist , he assumed I had a mini stroke and that I was going to have a stroke and didn't even want to do a test.. he wanted to put me on a blood thinner right away but fortunately I saw the opthamologist soon afterwards and he said it was an ophthalmic migraine and the fact that these two incidences were so close together made him certain it was an ophthalmic migraine. So anyway in my case it has nothing to do with fibromyalgia as far as I can tell. And I do not get a migraine. My head does not hurt.

May 18, 2025 (edited)
A MyFibroTeam Member

I’ve had those before. But, they were years ago. They are scary. The eye doctor told me what they were when I described it to him. How long do yours last?

May 18, 2025

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