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Eyes and Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Jun 17, 2020

I would love to hear from folks who have peripheral neuropathy and eyes problems such as worsening dry eye and photophobia (light sensitivity). Has anyone been to a neuro opthamologist for this and been advised of the correlation? What did you learn?

My eyes have mitigating circumstances.... beginning with Fuchs Dystrophy (cornea disease) requiring cataract and cornea transplants, intractable migraine and Small Fiber Polyneuropathy...all of which play off each other. Photophobia, for me, has been constant since prior to eye surgeries and increasingly worse after. Migraines create photophobia and vice versa. SFN is nerve damage/dysfunction which for me has created hyperalgesia (overactive and hyper sensitivity). The cornea contains the highest number of small fibers in your entire body. My ongoing dry eye is developing along with intense flares of light sensitivity. I feel like a vampire...it puts me down, to bed, in hiding. As I explore how to tackle worsening dry eye, I came across this link that opened my mind further and thought maybe it might help some of you who have dry eye and neuropathy.

Interested in more discussions like this? Go to the Eye Conditions Support Group.

Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 4, 2023
In reply to @bri85 "I am 37F. Normally extremely healthy. I’ve been having a plethora of problems recently. Officially now..." + (show)
@bri85

I am 37F. Normally extremely healthy. I’ve been having a plethora of problems recently. Officially now diagnosed with both Sjögrens Syndrome & Peripheral Small Fiber Neuropathy. I have been having a LOT of issues with my eyes but ophthalmologist says they look very healthy. No answers led me down a search online where I’ve found so many posts about weakened eyes and trouble focusing as well as eye pain due to their neuropathy, which I am having. I’ve plugged my tear ducks to help with the dryness and although I am seeing just fine as far as my vision is concerned, it feels very difficult to see since the pain and sensitivity in my eyes are always present. I want to shut my eyes all the time. Light bothers them, focusing bothers them. I am the healthiest unhealthy person I know. I’m a mess! Doc says I’d benefit from Plasma Exchange but that my insurance will never go for it. Maybe one day…

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Hey there @bri85 - I'm so sorry you're struggling with all of these conditions and your eyes are giving you grief. I have been where you are, not with exact diagnosis but ultimately being diagnosed with Central sensitization syndrome. Prior was diagnosed at 41 with a corneal disease needing eye surgeries, then B12 levels were off causing small fiber neuropathy...blah, blah, blah.

I do feel for you especially at a younger age it seems to make everything that much more difficult . It's rotten to have your eyes affected but the key takeaway is that you've been told you're eyes are healthy so this is more central nervous system dysfunction. It's good to hear your doctor has a plan for you. My best advice is to stay positive find solace in the fact that your eyes are healthy it's just that they are annoying you right now. Try to think positive and take one day at a time. Have you tried ways of calming such as meditation distraction journaling or humor? I'm sending lots of positive vibes. Hold On tight you'll get through this! Are you scheduled for your first treatment yet?

REPLY
1 reply
tullah | @tullah | Jul 4, 2023
In reply to @mtpeony "Hello! I am so happy to hear that Dr. Harah has helped you....I have an appointment..." + (show)
@mtpeony

Hello! I am so happy to hear that Dr. Harah has helped you....I have an appointment with him in 2 months. I have seen many many opthomologists in the last 6 months to try to help me with eye pain and blurrying vision after cataract surgery---hoping he will be able to diagnose the problem and help. Is he kind and patient???? I am about worn out....Thanks

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I found him both kind and patient. The first visit was 41/2 hours of tests and meetings with other doctors and various technicians. He was extremely busy. I saved my questions for my second visit. Honestly, he was so busy I did not notice or particularly care how nice he was. I was beyond grateful for his expertise. I hope your visit goes well!!

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1 reply
mtpeony | @mtpeony | Jul 4, 2023

Hi-Thanks again for your input--are you in the Boston area? Had you been to other drs.??? did he repeat lots of tests.? Did he care that you saw other drs? We are in Newton.

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bri85 | @bri85 | Jul 4, 2023
In reply to @rwinney "Hey there @bri85 - I'm so sorry you're struggling with all of these conditions and your..." + (show)
@rwinney

Hey there @bri85 - I'm so sorry you're struggling with all of these conditions and your eyes are giving you grief. I have been where you are, not with exact diagnosis but ultimately being diagnosed with Central sensitization syndrome. Prior was diagnosed at 41 with a corneal disease needing eye surgeries, then B12 levels were off causing small fiber neuropathy...blah, blah, blah.

I do feel for you especially at a younger age it seems to make everything that much more difficult . It's rotten to have your eyes affected but the key takeaway is that you've been told you're eyes are healthy so this is more central nervous system dysfunction. It's good to hear your doctor has a plan for you. My best advice is to stay positive find solace in the fact that your eyes are healthy it's just that they are annoying you right now. Try to think positive and take one day at a time. Have you tried ways of calming such as meditation distraction journaling or humor? I'm sending lots of positive vibes. Hold On tight you'll get through this! Are you scheduled for your first treatment yet?

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What a precious reply. Thank you for taking the time to write this..

No treatment in sight. Dr has ordered IVIG but no idea what insurance will do. He’s asked me to pursue UCLA in the meantime for Plasma Exchange which is what I really need right now.

I still in Awe that my Dr really believe ALL of what I am going through is a post covid complication. To have a dormant auto immune disease come to a head and wreak havoc on your CNS and cause the grief that it has is almost incomprehensible. I am living a daily nightmare.

I am also so grateful to finally have some answers after 6 months of fighting and fighting for them. Over a hundred Dr visits. Every specialist.

And with answers we have hope to pursue treatments… I have faith it will all work out and that this current state is just the Lord pruning me for a better season! 💜

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 14, 2023
In reply to @bri85 "What a precious reply. Thank you for taking the time to write this.. No treatment in..." + (show)
@bri85

What a precious reply. Thank you for taking the time to write this..

No treatment in sight. Dr has ordered IVIG but no idea what insurance will do. He’s asked me to pursue UCLA in the meantime for Plasma Exchange which is what I really need right now.

I still in Awe that my Dr really believe ALL of what I am going through is a post covid complication. To have a dormant auto immune disease come to a head and wreak havoc on your CNS and cause the grief that it has is almost incomprehensible. I am living a daily nightmare.

I am also so grateful to finally have some answers after 6 months of fighting and fighting for them. Over a hundred Dr visits. Every specialist.

And with answers we have hope to pursue treatments… I have faith it will all work out and that this current state is just the Lord pruning me for a better season! 💜

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Hi, @bri85, how are you doing today? Any word on if your insurance will cover IVIG?

Your situation has me thinking, especially you saying, "I'm the healthiest, unhealthy person". It resonated because I felt that way, too, until I came across a video from Mayo Clinic's Dr. Sletten who runs the Mayo Pain Rehab Center in Florida. He discusses chronic pain and explains Central Sensitization Syndrome (CSS). You mention having answers and seeking a treatment, which is a huge relief, however, while you go through the process of insurance and clearance, perhaps Dr. Sletten will resonate with you and provide new insight. Here is his video:

Dr. Christopher Sletten - Central Sensitization Syndrome:

I'm excited to hear your response, and whether you found it to be valuable. Will you let me know your thoughts?

REPLY
pacer3702 | @pacer3702 | Jul 15, 2023
In reply to @bri85 "I am 37F. Normally extremely healthy. I’ve been having a plethora of problems recently. Officially now..." + (show)
@bri85

I am 37F. Normally extremely healthy. I’ve been having a plethora of problems recently. Officially now diagnosed with both Sjögrens Syndrome & Peripheral Small Fiber Neuropathy. I have been having a LOT of issues with my eyes but ophthalmologist says they look very healthy. No answers led me down a search online where I’ve found so many posts about weakened eyes and trouble focusing as well as eye pain due to their neuropathy, which I am having. I’ve plugged my tear ducks to help with the dryness and although I am seeing just fine as far as my vision is concerned, it feels very difficult to see since the pain and sensitivity in my eyes are always present. I want to shut my eyes all the time. Light bothers them, focusing bothers them. I am the healthiest unhealthy person I know. I’m a mess! Doc says I’d benefit from Plasma Exchange but that my insurance will never go for it. Maybe one day…

Jump to this post

There are a few Covid vaccine-injured people whose eyes have documented trouble with tracking. Vaccine injuries are similar to long Covid. These patients had trouble being diagnosed initially and now wear special glasses. One patient had her husband video her eye movements while trying to focus on the horizon in a moving car. That helped her doctors tremendously in identifying the problem.
You could connect with these patients by joining the Neuro V Long-Haulers Facebook group.

REPLY
1 reply
bri85 | @bri85 | Jul 15, 2023
In reply to @pacer3702 "There are a few Covid vaccine-injured people whose eyes have documented trouble with tracking. Vaccine injuries..." + (show)
@pacer3702

There are a few Covid vaccine-injured people whose eyes have documented trouble with tracking. Vaccine injuries are similar to long Covid. These patients had trouble being diagnosed initially and now wear special glasses. One patient had her husband video her eye movements while trying to focus on the horizon in a moving car. That helped her doctors tremendously in identifying the problem.
You could connect with these patients by joining the Neuro V Long-Haulers Facebook group.

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Thank you very much. I was not vaccinated and I’ve had a VNG test. So I know my tracking is great. It’s almost like reading and focusing on the words is just difficult. But I’ve read that neuropathy will have that symptom.

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mtpeony | @mtpeony | Jul 28, 2023

Tullah-- I have an appt with Dr. Harah--at the end of OCT!!!!---what did he do for you???has it helped??? Thanks, Millie

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mtpeony | @mtpeony | Dec 23, 2023
In reply to @tullah "I found him both kind and patient. The first visit was 41/2 hours of tests and..." + (show)
@tullah

I found him both kind and patient. The first visit was 41/2 hours of tests and meetings with other doctors and various technicians. He was extremely busy. I saved my questions for my second visit. Honestly, he was so busy I did not notice or particularly care how nice he was. I was beyond grateful for his expertise. I hope your visit goes well!!

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tullah--Hello. So happy to see your post...I am seeing Dr. Hamrah also...Story short..had cataract surgery a year ago and had one eye pain and blurring from day 1--- saw many opthomologists , all of course saying dry eye---But after all the treatments, all which hurt (plasma drops,steroids, etc) still getting a micro blur when my eye moves.. So all different theories.
Discomfort has been a little better, but still blur (SO annoying and upsetting)
Saw Hamrah 6 months ago, gave antibiotics and told to massage lids. Also ordered blood work.
No follow up
Yesterday, gave me a different plan with little explanation or discussion. Says this is a nerve problem and ordered more steroids (4x day and serum drops 8 times a day and mite drops 2x day....wheh, this is an every hour attention. Most upsetting was his attitude of un encouragement or comforting ---JUST do what he says attitude. At this point, a year into this, I need to feel like he cares! I almost think that he gives this same plan to all patients????
Are you in the Boston area? I hope you are doing well and can connect. thanks, Millie

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