Visual Problems with ME/CFS

Last week on the CFIDS Association Facebook page, the organization brought up issues with visual disturbances in ME/CFS.  Visual problems are something that is hard for people who do not have CFS to understand and it’s hard to explain to them why we have them.  When someone questions why I wear sunglasses even when it’s almost dark outside, I just say it’s part of my illness but I wish I knew why visual problems exist with CFS. 

Here is what the CFIDS Association had to say about visual disturbances with ME/CFS in their 2001 article:

There are few references in the literature to visual and/or ocular disturbances in chronic fatigue syndrome (CFS), even though visual symptoms are common. Ocular symptoms have been quantified, and are significantly more common than in control groups.

The ocular signs and symptoms of CFS have not been considered to be a major part of this condition in the past, yet it becomes very obvious when working with these patients that the ocular system is very much affected by, and in turn affects, this systemic condition.

The visual symptoms typically encountered with CFS patients include:

  • Blurred or foggy distance and/or near vision. Blur tends to fluctuate according to the state of the fatigue at the time;
  • Difficulty focusing from distance to near and/or near to distance;
  • Slowness or inability to focus on objects, particularly at near;
  • Difficulty tracking lines of print. Patients seem confused and distracted by the lines of print above and below where they are reading;
  • Poor short-term memory and concentration (generally) with reading being markedly affected;
  • Diplopia or ghosting of images;
  • Problems with peripheral vision; patients complain of not seeing objects in their side vision and of continually bumping into things and veering. Some say they feel like they have tunnel vision;
  • Misjudging distances, clumsiness, poor balance and coordination. Diffi-culty driving due to problems judging distances;
  • Dizziness and inability to tolerate looking at moving objects;
  • Spots, flashes of light, floaters and halos;
  • Intolerance to light (glare);
  • Grittiness, burning, dryness or itchiness. Patients complain of sore eyes usually becoming worse as the day progresses;
  • Headaches often increasing when reading, concentrating visually and driving.
  • In many cases almost all of these symptoms occur, producing varying degrees of disability. These patients have sensory intolerance and appear to have a degree of inability to suppress background sensory events from reaching a distracting level in consciousness.

I have had visual problems for years since I developed CFS and my main problems would have to be intolerance to light, headaches, blurry vision, seeing spots and flashes.  I will think that something is in front of my eyes 0r hanging from my hair in my eyes but it is usually the black spots that I see.  I keep my house dark most of the time and I am always having my family turn all of the lights off because I can’t stand to have the lights shining. 

I have trouble seeing the guide on the television because everything will look blurry.  So when I went to the eye doctor, they couldn’t help me because she said my vision was changing from minute to minute.  She said there wasn’t any way she could prescribe glasses when my vision changed so frequently.  She said it was due to chronic illness and medications. 

According to the CFIDS Association, their studies showed the below listed ocular findings upon examination:

Poor oculomotor control. This is evident when observing motilities, particularly saccadic eye movements. Saccades, normally quick eye movements, are very slow, with marked jerkiness. Conscious effort goes into changing visual fixation, as if it is hard to let go of looking at an object once vision is fixed on it. Pursuits (tracking an object) are not smooth and cannot be done quickly. Discomfort and often nausea is associated with saccadic and pursuit eye movements;

Exophoria, the tendency for one eye to diverge or turn outward when the other eye is covered, is often greater at near in these patients, usually with a slow recovery. However, the exophoria may not appear high due to a long-term compensation process. CFS patients often adopt a typical posture associated with exophoria-sitting well forward on the chair with their shoulders halfway down the chair back in a semi-reclined position;

Remote nearpoint of convergence, where both eyes converge on the same close-in location at the same time, is usually observed, with slow recovery. This test may be quite painful;

Reach/grasp/release tests that require the patient to reach out and touch or grasp an object, shows a marked decrease in the patient s ability to reach and grasp after release. One eye usually diverges without the patient being aware. Patients often complain of nausea, significant discomfort or dizziness when performing this test;

Near/far/near fixations commonly show poor convergence at near with one eye usually diverging. Such vergence changes are typically very slow and often uncomfortable to execute, with sometimes an associated tendency to use raised eyebrows and wide open eyes to assist in changing to far;

Constricted peripheral fields. In my experience, treatment with lenses and vision therapy produces marked improvements in field. In my opinion there are probably several factors involved, including improved central/peripheral processing and sensory-motor coordination, and hence heightened attention;

Staring appearance; low blink rate and incomplete blinking;

Small pupils;

Sensitivity to lights;

Tear film and ocular surface abnormalities. Low tear break-up time, related to inadequate production of the oil or mucus layer in tears, is frequently observed. So is rose bengal corneal staining, which reveals cell death in the cornea due to dryness;

Low grade chronic allergic conjunctivitis;

Visual midline shift in these patients, particularly if the patient has been diagnosed with fibromyalgia.

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  1. Thank you for this post and information. I have definately notices (and am struggling) with the following eye related side effects:
    1. Blurred vision (which does increase with increased fatigue)
    2. Difficulty following lines of print
    3. Ghosting of images
    4. Problems with periphial vision (I constantly have bruises all over me from running into furniture, door frames etc.)
    5. Intolerance to light (glare)
    6. Sore eyes (increases throughout the day)

    Yet again, it is somewhat of a relief to realize that these are “normal” with CFS.

    • Marie Piekarski says:

      The above describes the difficulties I have always experienced. I have suffered from migraine and M.E since childhood.

  2. Amy biggs says:

    I have cfs and have been expieriencing flashes and especially when sleeping rapid eye movement almost like there spasms, won’t relax when lids are shut,want to roll all over or left to right rapidly or won’t want to open and this is sometimes flashes are very frequent. Is this to worry about or just a symptom?

  3. Thank you for this, if it wasn’t for web based resources like this I think people like me would have to go years and years and years hopping between doctors, doing scans, doing tests (that never find anything). then being told by everyone that I am fine, and I need therapy or thats its all just stress.

    I still do not have a diagnosis, but I am now almost sure that this is it.
    I have Blur, Ghosting, Floaters and light sensitivity. loss of motor skills.
    I sleep 10+ hours a day and have weird dis-coordination of my arms, and tingly sensations too. Now my legs feel a bit weak as well. this has been going on for almost a year now.

  4. Crystal says:

    I was just recently diagnosed with exophoria (last week) which could explain my fatigue. I am tired ALL the time but have not been officially diagnosed with CFS. I thought it was my severe sleep apnea causing the fatigue (diagnosed in March 2017), but once I got a CPAP, it did not help. I suffer from fatigue, blurry vision, double vision, inability to comprehend what I am reading and much more. I am waiting on new lenses that should help adjust my eyes. I am hoping that will resolve most of my symptoms included fatigue.

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