Eyes and Neuropathy

@rwinney Rachel I have small nerve fiber and I have the pinpricks in my eyes and all over. I went to a neuro-opthalmologist and he did indeed tell me it is related to my small nerve fiber. The pricks are very annoying. I have them very close to the eyes and in the eyes. You can read my story under my name rnlorena. He checked the nerves in my eyes and will continue to follow me for this. I have the very tiny beginning of macular degeneration in my left eye. He will keep up with me on that also. Mine is idiopathic so far and it is frustrating. I now take a beta blocker due to my heart rate going up to 182. I can't get an answer if it is caused by the SNF. I kinda feel like it is. Neuro said he can't say yes to that. But I find it odd that in March two days after I retired I woke up with full onset pin pricks and then in April I woke up and felt funny in my chest thinking it was my palpitations acting up more than usual. But no it was my heart rate and after testing I take a beta blocker. I also have a burning pain that is on the top of my left hand. It does from the wrist down to the area between my little finger and ring finger and it comes and goes all day long. In our last discussion my neuro said that there is a cause we just don't always know what it is. Ha! I have read the stories of other people on this site and know that they have way more issues than I do.
I would like to go to Mayo in Jacksonville but know that it takes a year to get an appt. and just because I want to go doesn't mean they will see me.

I have polyneuropathy.
I had an eye test yesterday. I had my peripheral vision checked and I paid extra for an OCT.
The Optician says my sight has changed some, due to age, as I expected. But he couldn't explain why my eyelids seem to stick to my eyeballs every evening while awake and when I try to open them from sleeping. He could tell me it was definitely not dry eye.
Does anybody have any idea? I also have a timpanic sound in my right ear, tmj on my left side and a lump in my throat off and on during the day. I cannot lie on my back comfortably due to this lump.

Hi Karen, that must be frustrating when the optician couldn't help explain your symptom of your eyelids sticking. @kireraw @kckc @10987654321 also have eye issues along with polyneuropathy and some of the other symptoms that you've mentioned. They may have some experiences to share with you.

Karen, have you considered going to see an ophthalmologist or neuro-ophthalmologist?

No. I hadn't thought of that, thank you. I will ask my GP to refer me if there are any in this area.

Hi Karen, I have (had) very dry eyes from a medical condition and can sure relate to the eyelids sticking to my eyeballs. It was horrible, especially waking up in the morning.
What I found that works the best for me is Systane Nighttime ointment. You squirt about a quarter inch of the gel in the lower lid and blink a few times to spread the ointment. Your vision is affected for a few moments as the gel melts over the eye, but clears after blinking rapidly a few times. It’s so soothing.
I apply this before bedtime. It works best if used religiously daily.
I no longer need eye drops during the day!
I hope this works for you.
Also, if you are focused on a computer screen during the day, try to blink more often to keep your eyes from getting too dry.
What other products have you tried?

Hi
Thank you for your reply. I haven't tried any products yet as I was waiting for my optician appt. I shall have a look for the product in the UK although the Optician did say it wasn't dry eye. He suggested it was possibly connected to my neuropathy but was unsure.
It only happens at the end of the day and when I wake numerous times throughout the night. I do not work with computer screens anymore.

I officially didn’t have ‘dry eyes’ either according to my ophthalmologist. But there was a definite adhesion of my eyelid to my eyeball any time I had my eyes closed for any length of time. My eye ball wasn’t dry, it was the inside of my lid, even though I have no difficulty producing tears.

The Systane nighttime ointment works so well, even my eyes appear brighter with a healthy look to them. Before the daily use of the gel, my eyes looked dull. The active ingredients are, White Petrolatum 94%, Mineral Oil 3%, Anhydrous Liquid Lanolin 3% and it’s preservative free.

Not sure if it’s sold in the UK but there must be other over the counter eye products. Ask a pharmacist what would be equivalent.

But don’t wait to try some moisturizing/lubricating eye drops even before you get an eye appointment. Neuropathy related or not, your eyes will feel so much better with some eye drops during the day.
Your neuropathy may be preventing you from blinking as frequently as usual or maybe your tear production is affected. That can be tested easily by an ophthalmologist. In the meantime, using a safe, preservative free eye moisturizing product won’t hurt you but it may have you feeling more comfortable.

Do your eyes feel gritting and tired too?

Great, thanks. I will look out for those ingredients if I can't find that product. It can't hurt to try it.
No they aren't gritty but they are tired late evening.

@rnlorena Hello. My apologies for not seeing your message earlier. I'm wondering if you are still out there and having the same issues of burning, pin pricks, palpitations. Small fiber neuropathy can explain nerve misfires and other wide spread symptoms. Have you inquired about an getting an appointment at Mayo Clinic yet? How have you been doing?

Rachel,
I still have the burning, pin pricks and palpitations. My eyes really bother me. I am still seeing the Neuro opthalmologist who will check the nerves in my eyes along with other things. I have been having fasciculations that just started up. Have had one or two here or there but It is funny because they are on one side. I have been having them in my left eye lid, the top of my head on the left and my left leg. I noticed when the small nerve fiber first started and the pricks were going off all over that they would sometimes be all on one side and sometimes the other and then just all over. I do get the palpitations which I am taking magnesium and they come and go. I had them when I was younger but they were different. I gave up most all caffeine but will have some occasionally. I know that caffeine can make them worse but. I have had some caffeine and don't have them then they suddenly show up. I had to get a new Dr. recently a general practitioner and I am up in the air about her. I told her on the first visit that I was anemic last year and I had taken something for it. My bloodwork was checked by my other Dr. and it was back to normal. My new Dr. did bloodwork and I looked it up on the patient portal. I saw reds and was concerned. I had to call them. I got a call back and they said I am slightly anemic. They didn't say to do anything until my visit. I hate waiting. I could have just started up the optiferin C again. I am losing my trust in the medical community. I have never ever had to call the Dr. I always get a call whether the blood work is good or bad. I am upset about that. I have idiopathic SNF. I have read up on all of this. I am repeating myself from before but last year in March I decided to retire from work. Two days later I woke up with diffuse pinpricks all over. Then in April I woke up on a Sunday and felt strange sensation in my chest and I thought to myself that it was palpitations but it wasn't. After a heart monitor it showed my heart rate was 183. I had other tests and nothing showed up for a cause for the increased heart rate. If I am correct the SNF can affect the autonomic nervous system. I did ask my Dr. about a referral to Mayo and she basically said she wants me to go back to the neuro Dr. again and if they can't find anything she might get me a referral. She basically said that a lot of money could be wasted for nothing. That ticked me off. The hardest part about all of this is not knowing. I try not to think about what is coming next. I did connect with a group of people that had their coronavirus shots and some of them started with symptoms like mine. Some had symptoms right after the shot but I was curious and asked if others who had the shots had them after and how long after. I was not surprised. I wondered if mine could be caused by that. I am not reading much about anyone that is checking into that. I would love to go to the Mayo Clinic and see if they could come up with anything or could give me more information. I was checked by neuro for heavy metals, some of the autoimmune, and genetics. Nothing has been found. My Dr. is associated with Baptist hospital here and they are affiliated with Mayo. Do you know if my doctor were to send my records to Mayo and request an appt could they turn me down? I consider myself luckier then most to have what I have and not what others have. I thought Mayo would be a good place to go because the Doctors may know more than the Doctors that I have been seeing. My last visit to my neurologist he said," well we know there is a cause we just don't know what it is". UGH! I know what medications are and what they are used for but lately I want to chuck them all. I am taking metoprolol for my heart rate but it can cause palpitations. Hah!. I have to take pantoprazole for silent chronic acid reflux and chronic gastritis. I have take it for two years. All my dexa scans have been good up until the last one. I was told from the beginning that it could cause osteoporosis. Well I know have osteopenia. It is very frustrating!!!!