Hi. I have a question about a symptom with my eyes. Long story short..I have had CFS for 12 years. Two years ago I woke up one morning with the vision in my left eye totally blurry. I went to many eye doctors and specialists. I They thought maybe I could have MS...being I had normal vision one day and the next day I can't see right from one eye. My evoked visual tests came back normal but my MRI showed I had lesions on my brain, but they don't know why. So no MS diagnosis right now. Two years later and this is the pattern. I can see out of my left eye when I first wake up. By the afternoon it is somewhat blurry but by nighttime I can't see out of my left eye hardly at all. The vision is SOOO bad. When it gets this bad it is not even correctable at the eye doctors...no glasses in the world would bring that vision back. They have shrugged and acted like it is no big deal. I can't read anymore at night and can't see. It is so distorted. I have asked the expert eye specialists if it could be related to my chronic fatigue...and asked the neurologist the same thing and they said no. Has anyone here had vision changes that could not be explained?
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Eye Question...need help
- Thread starter Loopymama
- Start date
caledonia
Senior Member
- Messages
- 4,610
I have blurry vision from time to time, but it comes and goes.
Those with ME/CFS can have brain scans with lesions (white spots). Were your lesions in an area that would affect vision?
Are your eyes dry, gritty, irritated?
What kind of meds are you on? Did you start any new meds around the time your vision changed?
Those with ME/CFS can have brain scans with lesions (white spots). Were your lesions in an area that would affect vision?
Are your eyes dry, gritty, irritated?
What kind of meds are you on? Did you start any new meds around the time your vision changed?
I have a similar problem but not quite as bad, I can't read books,mags or papers, too much for my eyes, computer okay for so long with the light behind the words. I saw a eye surgeon who said he couldn't see any problem, I just put it down to one of those things that happen with this illness. I would say that its connected to ME , okay in the morning after rest and as the day goes on and the body running out of energy, eyes get worse too. Thats my interpretation. Dr My-hill says eye muscles are just like all other muscles and lose energy too.
nanonug
Senior Member
- Messages
- 1,709
- Location
- Virginia, USA
Would you mind describing what other symptoms you have (not eye-related)? And, do they correlate with the blurriness?
merylg
Senior Member
- Messages
- 841
- Location
- Sydney, NSW, Australia
Hi Loopymama,
Hope you can get some help soon. If you get no answers from seeing an Optometrist or Opthalmologist, you may need to see a Neuro-Opthalmologist eg at a major teaching hospital/eye hospital.
Here are some ideas on vision loss: http://en.wikipedia.org/wiki/Optic_neuropathy
I am having some eye issues & not getting answers from seeing Optometrists & an Opthalmologist. Next week I am seeing a Neurogeneticist to consider general Mitochondrial issues. If I have to, I will see a Neuro-Opthalmologist until I get some answers!
Seems like the neurologist may have wanted to follow up with a Lumbar Puncture (Spinal Tap), or have done this before an MRI. Was that ever suggested? I am not sure of all the symptoms you presented, but have also heard of numerologists using Electromyography (EMG), Nerve Conduction Studies (NCS), Electroencephalogram (EEG), Video Electroencephalogram, as well as 24-Hour Ambulatory EEG to narrow down what might be going on.
I have also had visual disturbances that I have presented for the last 5-6 months and have on my notes as "Blurred vision or not in focus vision or otherwise change in vision undefined - loss of visual acuity." It has not been adequately dismissed by the last five doctors. It is a long shot, but wondering if your MRI showed any Cerebellar Tonsil Herniation/Chiari Malformations/Tonsillar Ectopia. This was unexpectedly picked up on mine (radiologist did not note it or maybe seemed insignificant to him) but internist picked it up. It also has a visual disturbance component to it.
I have also had visual disturbances that I have presented for the last 5-6 months and have on my notes as "Blurred vision or not in focus vision or otherwise change in vision undefined - loss of visual acuity." It has not been adequately dismissed by the last five doctors. It is a long shot, but wondering if your MRI showed any Cerebellar Tonsil Herniation/Chiari Malformations/Tonsillar Ectopia. This was unexpectedly picked up on mine (radiologist did not note it or maybe seemed insignificant to him) but internist picked it up. It also has a visual disturbance component to it.
- Messages
- 2,573
- Location
- US
This may not have anything to do with yours, but my vision is blurrier when I had to push myself. I think the stress causes norephinephrine levels to go up and it has an effect of dilating my pupils.
Asklipia
Senior Member
- Messages
- 999
Loopymama, I have some answers for you. They may not be what other people propose.
I have suffered from this sudden blurry vision in one eye - the left one too, getting worse and worse or suddenly better and gone to all kinds of specialists (eye and neurologists). There was no answer there, only that my eye was healthy as far as they could see. Which was a big relief.
That it is related to a neurotransmission problem I agree. But in an indirect way.
What I have found out is that it happens because of a disturbance in the lymphatic system. The discovery of lymph channels in the eyes is fairly recent. This is the real cause of cataracts (lymph stuck in the lens either because too much lymph is being brought there or there is a stagnation or both or a narrowing of lymph channels there). This is why glaucoma happens. Of both types.
And this is due to problems with the sympathetic nervous system. The same way CFS happens.
The good news is, as long as you do not stress your eye enough to get a detached retina, you are OK and when you solve your CFS problem, your eye will come back to normal.
This is what happened to me. From birth my left eye was myopic (-3.75 or about) and I had strong astigmatism in the eye. This did not change for years. About 10-15 years into CFS what happened to you happened to me too. I was desperate and went to all kinds of specialists. To no avail. I ended up with -12.5 myopia, the worst was January 2012 when I had to strain my eyes so much that I gave myself vitreous detachment. I was 60 years old then.
In the last 10 months I have now gone from -12.5 myopia to -2 myopia and do not wear glasses anymore (I do not drive!). This is not steady yet, sometimes I relapse for a few days, but the times when I see better last longer and longer as time passes, a sure sign that I am getting cured.
This did not happen easily as I know of no one who went the same way as I did. I could not find explanations anywhere but here it is :
That lymph is expelling something. It burns awfully. The first few times it comes out is hell but now my eyes are more relaxed. I realize that all my life I had irritated eyelids which I thought were normal. They were not because now half of the time my eyelids are cool and happy. For the last five years apart from cataracts I had dry eyes on waking, sometimes crusty and would want to rub my eyes in the day. This NEVER happens anymore.
I believe I am getting healed. And I believe this CFS is something I always had but did not notice. My eyes did notice however.
Good luck and lots of good wishes!
Asklipia
FFP
I have suffered from this sudden blurry vision in one eye - the left one too, getting worse and worse or suddenly better and gone to all kinds of specialists (eye and neurologists). There was no answer there, only that my eye was healthy as far as they could see. Which was a big relief.
That it is related to a neurotransmission problem I agree. But in an indirect way.
What I have found out is that it happens because of a disturbance in the lymphatic system. The discovery of lymph channels in the eyes is fairly recent. This is the real cause of cataracts (lymph stuck in the lens either because too much lymph is being brought there or there is a stagnation or both or a narrowing of lymph channels there). This is why glaucoma happens. Of both types.
And this is due to problems with the sympathetic nervous system. The same way CFS happens.
The good news is, as long as you do not stress your eye enough to get a detached retina, you are OK and when you solve your CFS problem, your eye will come back to normal.
This is what happened to me. From birth my left eye was myopic (-3.75 or about) and I had strong astigmatism in the eye. This did not change for years. About 10-15 years into CFS what happened to you happened to me too. I was desperate and went to all kinds of specialists. To no avail. I ended up with -12.5 myopia, the worst was January 2012 when I had to strain my eyes so much that I gave myself vitreous detachment. I was 60 years old then.
In the last 10 months I have now gone from -12.5 myopia to -2 myopia and do not wear glasses anymore (I do not drive!). This is not steady yet, sometimes I relapse for a few days, but the times when I see better last longer and longer as time passes, a sure sign that I am getting cured.
This did not happen easily as I know of no one who went the same way as I did. I could not find explanations anywhere but here it is :
That lymph is expelling something. It burns awfully. The first few times it comes out is hell but now my eyes are more relaxed. I realize that all my life I had irritated eyelids which I thought were normal. They were not because now half of the time my eyelids are cool and happy. For the last five years apart from cataracts I had dry eyes on waking, sometimes crusty and would want to rub my eyes in the day. This NEVER happens anymore.
I believe I am getting healed. And I believe this CFS is something I always had but did not notice. My eyes did notice however.
Good luck and lots of good wishes!
Asklipia
FFP 
I had blurred vision for ten years in both eyes, sometimes better, sometimes worse, throughout each day. I could no longer play the piano or organ regularly, never knowing when I could see the music or not. Reading was the same way, and also complicated by brain fog, of course! I had pretty much adjusted to the idea that blurred vision was permanent, a very not fun part of ME/CFS or FMS for whatever reason.
Then, in January 2010, I started a course of hCG for weight loss, not only for the weight loss but for the detoxifying effect it would have. I had studied it for five years, and decided -- correctly, according to my medical doctor -- that with the strict diet and loss of fat, it would detox my system thoroughly, perhaps ending 20 years of misery with systemic candidiasis. Well... that's just what happened. I lost 35 pounds, lost candidiasis -- and the blurred vision, entirely. The eye doctor was able to confirm it completely, as he had done my previous exam the year before.
My vision, I believed, had gotten worse. I could do nothing, no needlework, no reading, could not enjoy movies, no music, etc. I postponed making an eye appointment for about three months because I didn't want to hear how bad my eyes were. Surprise, surprise! My eyes were "bad" because all my corrective lenses were off 1 1/2 diopters, so of course everything was worse. The doctor stood there looking at one exam sheet to the other, just dumbfounded, but could not dispute the findings as he had done both exams. He said,"This never happens. Your eyes have IMPROVED." He asked me what had changed, what did I do differently. I told him I had both FMS and ME/CFS, and that possibly it had improved with the detox. He had no explanation for it.
I happily accepted his diagnosis of finally needing bifocals, and have just loved them! I CAN SEE again!! It was an emotional high by itself for months. He also ordered single-vision contact lenses for me (I love to go dancing! -- even though these days that means sitting and visiting at a dance) and single-vision glasses for me for computer work and music. Everything I had lost was given back to me that quickly.
A side note about using hCG: I was very, very weak from that regimen, and do not recommend it at all for someone with ME/CFS. It is an 80-year-old regimen, proven and extremely safe for someone in good health. For a sick person, it is not easy to do, and I would not ever dare do that again. Also, the regimen will "reset" the hypothalamus and reset body metabolism, something that did not happen for me. I was a happy but hungry size 8 for 14 months before I gave in and let some weight creep back on. I'm happy with my body as it is now, but do wonder about toxins being stored in fat and wish it were off for that reason. Waaaa, I'm a size 10, ha, ha, ha. So what!
I'm intrigued by the idea that the eyes are so affected by the lymph system. In my thinking, that lends credibility to the whole detoxification theory behind my eyesight improving.
As for the hypothalamus... I'm also intrigued to read on this site a few threads about the HPA axis and possible abnormalities in ME/CFS, which could explain the failure of the hCG regime to "reset" anything.
Then, in January 2010, I started a course of hCG for weight loss, not only for the weight loss but for the detoxifying effect it would have. I had studied it for five years, and decided -- correctly, according to my medical doctor -- that with the strict diet and loss of fat, it would detox my system thoroughly, perhaps ending 20 years of misery with systemic candidiasis. Well... that's just what happened. I lost 35 pounds, lost candidiasis -- and the blurred vision, entirely. The eye doctor was able to confirm it completely, as he had done my previous exam the year before.
My vision, I believed, had gotten worse. I could do nothing, no needlework, no reading, could not enjoy movies, no music, etc. I postponed making an eye appointment for about three months because I didn't want to hear how bad my eyes were. Surprise, surprise! My eyes were "bad" because all my corrective lenses were off 1 1/2 diopters, so of course everything was worse. The doctor stood there looking at one exam sheet to the other, just dumbfounded, but could not dispute the findings as he had done both exams. He said,"This never happens. Your eyes have IMPROVED." He asked me what had changed, what did I do differently. I told him I had both FMS and ME/CFS, and that possibly it had improved with the detox. He had no explanation for it.
I happily accepted his diagnosis of finally needing bifocals, and have just loved them! I CAN SEE again!! It was an emotional high by itself for months. He also ordered single-vision contact lenses for me (I love to go dancing! -- even though these days that means sitting and visiting at a dance) and single-vision glasses for me for computer work and music. Everything I had lost was given back to me that quickly.
A side note about using hCG: I was very, very weak from that regimen, and do not recommend it at all for someone with ME/CFS. It is an 80-year-old regimen, proven and extremely safe for someone in good health. For a sick person, it is not easy to do, and I would not ever dare do that again. Also, the regimen will "reset" the hypothalamus and reset body metabolism, something that did not happen for me. I was a happy but hungry size 8 for 14 months before I gave in and let some weight creep back on. I'm happy with my body as it is now, but do wonder about toxins being stored in fat and wish it were off for that reason. Waaaa, I'm a size 10, ha, ha, ha. So what!
I'm intrigued by the idea that the eyes are so affected by the lymph system. In my thinking, that lends credibility to the whole detoxification theory behind my eyesight improving.
As for the hypothalamus... I'm also intrigued to read on this site a few threads about the HPA axis and possible abnormalities in ME/CFS, which could explain the failure of the hCG regime to "reset" anything.
caledonia
Senior Member
- Messages
- 4,610
Ok, so it sounds like you have to cure your ME/CFS to cure your eye problem. It that case, I would suggest checking into methylation.
Another approach, if it's a lymph thing, may be trying some (careful) rebounding to get the lymph moving.
Another approach, if it's a lymph thing, may be trying some (careful) rebounding to get the lymph moving.
ahimsa
ahimsa_pdx on twitter
- Messages
- 1,921
I was curious about HCG (I don't need weight loss but had never heard of it) so I did a quick search. I found this FDA warning:
http://www.fda.gov/forconsumers/consumerupdates/ucm281333.htm - "HCG Diet Products Are Illegal"
Just FYI for anyone who was considering it.
GracieJ, this is not directed at you! I'm very happy for you that you were able to get some symptom relief, eye improvement, and so on. I just I thought I should post this message in the spirit of full disclosure.
http://www.fda.gov/forconsumers/consumerupdates/ucm281333.htm - "HCG Diet Products Are Illegal"
Just FYI for anyone who was considering it.
GracieJ, this is not directed at you! I'm very happy for you that you were able to get some symptom relief, eye improvement, and so on. I just I thought I should post this message in the spirit of full disclosure.
That is really sad. Another example of the FDA superimposing its "guidelines" on a tried-and-true, decades-old protocol. Off-topic, sorry, but had to say it. I spent five years studying it.
I have issues with blurriness quite often as well. I've also had other significant eye-related issues (e.g. light sensitivity, visual trails, visual snow). My suffering went into full-blown chaos with visual symptoms in 2009. I still have eye-related issues, but they have almost completely resolved. I suspect at this rate my visual field will be at or close to 100% within a few months.
My theory is related to vascular flow. I also think the lymphatic theory is intriguing and one I have made a few connections to, but nothing I could share more about. Regarding vascular flow, I have made significant connections to endothelium health and micro-circulation. If you want to test something out, try a supplement called Bilberry. My reaction to Bilberry was tremendous on many levels of blood flow and the nervous system. I actually felt quite happy on it too. For other reasons, I cannot continue the supplement. But, I suggest you try it and see what happens. You may find benefit for your eyes.
My theory is related to vascular flow. I also think the lymphatic theory is intriguing and one I have made a few connections to, but nothing I could share more about. Regarding vascular flow, I have made significant connections to endothelium health and micro-circulation. If you want to test something out, try a supplement called Bilberry. My reaction to Bilberry was tremendous on many levels of blood flow and the nervous system. I actually felt quite happy on it too. For other reasons, I cannot continue the supplement. But, I suggest you try it and see what happens. You may find benefit for your eyes.
Asklipia
Senior Member
- Messages
- 999
Here an interesting recent link about Lymphangioenesis in the eyes :
http://www.hindawi.com/journals/jop/2012/783163/
This would tie up with inflammation.
http://www.hindawi.com/journals/jop/2012/783163/
This would tie up with inflammation.