Comments on: Vision Problems with CFS

By: Iain

Iain — Wed, 27 Jan 2010 20:37:02 +0000

I find vision to be a big deal for me as well. I find it is one of the final components of a flare up of symptoms. My symptoms start with tingling/numbness in my feet and then move upward like a snake coiling around me. When the tingling gets to my head I know that it is time to find a spot to close my eyes for a few hours to let it all pass. If I try to fight it, by keeping my eyes open, my headache gets much bigger and faster. I also start to have trouble breathing. It’s really like a snake in that it covers the eyes and then begins choking.

I find that 2 very different solutions work. 1. Lie down and close eyes for a few hours. I find the iPod with books or music great for this time. TV and Reading make it much worse.

The second solution is to go for a walk. The first 15 minutes of the walk are usually very uncomfortable with lack of breath, vision, balance etc. But at some point the fog seem to clear.

By: Michelle

Michelle — Sat, 26 Dec 2009 23:40:59 +0000

OMG, right now I am dealing with the bouncing shaking, visual symptoms and I am scared to death over them. I went my ophthalmologist who said there is nothing wrong with my eyes.. then why on earth do I have the flickering, moving, dancing words whenever I try to read? This is so scary to me. I wish there was an explanation at least.

By: wali

wali — Tue, 05 May 2009 16:31:53 +0000

I agree that the visual symptomas with CFS may vary from one to other
I am an eye doctor ( concidentally) with cfs and visual problems , I see every thing moves not stable the same as an earth quick is happening all the time
I found that the base in prism changes my brain fog and decreases the blurred viison but not removal just decrease
as well I found the dark chocolate 70% works well with me
CFS with visual problem is disasterous

By: Jan Bing

Jan Bing — Wed, 31 Dec 2008 00:35:34 +0000

I was looking to see if electromagnetic fields can mess up vision and found this. Like many of you I have a DX of CFS/FM/MCS but what i found out last year, after 14 yrs of declining health is that I have mercury poisoing from old dental amalgams. The symptons are the same as CFS and can cause tons of other things. I feel horrible from the treatment, chelation with dmps but its the first clue I’ve had in years that there could be other things going on. But the vision thing, I can barely read this, look at a grocery store shelf and cant find what i’m looking right at.

The start for me was finding a really good doc who specializes in Environmental Medicine.

By: Brett Zamir

Brett Zamir — Tue, 18 Nov 2008 12:34:00 +0000

I have all of the classic conditions of chronic fatigue: an extremely stressful period of time before the fatigue (controlled anger at inner city school students who wouldn’t listen mixed with bouts of bronchitis), a bout of mono, and a Hodgkins lymphoma a few years later.

I don’t have any blurriness, but I wonder whether my problem with eye fatigue is related. Granted, programming is my new job (something I have energy to do), but even after taking it easy on my eyes for a while, my eyes are drooping all the time…

By: Shirley Poncini

Shirley Poncini — Mon, 17 Nov 2008 01:16:47 +0000

Hello Connie and others,

I am so glad to have found this site. Connie, it seems we have a lot of the same symptoms. The weight gain for one. Have you found anything to help loose it? My doctor is so upset with my weight he wants me to do “Lap-Band” surgery. Really. I keep telling him it’s not what I’m eating and if anyone should be upset it’s ME! Also I feel it would just add more stress to my system and I wouldn’t loose any weight.

Vision, now that’s something I have experienced since 1992. Light bothers me, I am unable to read like I want. Does anyone else have pain? When you try to explain your symptoms they look at you like you’ve gone off the deep end.I can see fine, I just can’t focus. Glasses don’t help. When I was first diagnoised an eye doctor told me it was the “cyliac”? muscle that that was weak. That is pretty much all I’ve heard. I’ve tried getting more info on this from books and on line. I have to tell you I’ve gotten more information just reading your coments. Has anyone else had the experience that everything was the “normal” blurry then all of a sudden everything is crystal clear? It is kind of scarry to see all that you have been missing. It doesn’t last long enough.

I am curious about Valtrex. How is that going for you. I just found out about it’s availability. My doctor won’t prescribe it and Dr. Montoya doesn’t take appointments. I’m on a waiting list.

Thanks to you all for your comments.

By: Robert

Robert — Thu, 23 Oct 2008 22:32:35 +0000

Had CFS for about 20 years. Used to have repetitive cold symptoms and headaches, they are mostly gone.
Over last few years started having the concentration, brain fog symptoms. Words swimming on the page sounds real familiar. Also have odd vision effects when I wake up in the morning, flicker of certain obects, blurry spots, brain filling in patterns wrong. One eye or other looks fine, two eyes together and some patterned objects are messed up first thing in the morning….

By: Deborah

Deborah — Thu, 23 Oct 2008 22:13:03 +0000

I too had the eye problems. I even went to my eye Doc and had my retinas mapped; had the neuro do the eye tests for MS diagnosis, all of that. I personally think it is caused by the neural inflamation that accompanies CFS. In my case I have HHV6 but I would suspect that whatever the underlying trigger, CFS itself has multiple system involvement including CNS so….. I have tons of neural problems now and am going thru more tests and monitoring to ensure I do not have any MS type problems – just inflamation from the CFS. When you think about the fact that the world community is split on how to name this terrible scurge – ME vs CFS vs CFIDS vs CFS / ME. In my case it is ME all the way.

anyway eyes are MUCH better after 3 months on Valtrex but there are days when I feel my vision and even the nerves and muscles in my eyes get droopy and I know I need to lie flat and rest.

By: Admin

Admin — Wed, 01 Oct 2008 23:36:17 +0000

I went to a doctor named jay goldstein about 6-7 years ago. He has since retired, but he would experiemnt on CFS patients with all kinds of drugs. One of the drugs he had me try was a gout medication.
I dont really remember the reasoning behind it. But i think he said it was a pretty effective drug for some of his patients.

By: connie

connie — Wed, 01 Oct 2008 21:23:31 +0000

I have been diagnosed with CFS for 17 years. When I am in a flair, I have difficulty focusing, as well. Brain fog, digestive problems, confusion, short attention span, weight gain, headaches, sore throat, are some of my symptoms. I am going to try to find the enzymes you are suggesting. I want you to know that I have a friend who is as fair complected as anyone, who was finally diagnosed with FMF–Familial Mediterranean Fever. She had been diagnosed with CFS and other illnesses. She began to go into the family’s geneology, and found a LOT of ARABIC and JEWISH family, much to her surprise. She convinced her doctor to put her on COLCHICINE(for gout). Within two hours of taking the first pill, the brain fog lifted, and she felt energy she had not felt for many years. Her symptoms and mine are very similar. I am not saying that we all have it, but there may be a connection to it. I asked my doctor to put me on a round of Colchicine, and he allowed it for a few months, because it is hard on the liver. I had no results from it, but not all persons with FMF respond to it. All I know is that CFS has changed my life from going 90 miles and hour, to almost reverse! It is nice to see the information on your blog. Thanks!