Visual Disturbance in CFS/M.E-Treatment?

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mittens123
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Joined: Tue Aug 13, 2013 11:23 pm

by mittens123 on Wed Aug 14, 2013 11:45 am

Visual Disturbance in CFS/M.E-Treatment?

Good morning All
Firstly thank you for this online clinic.
I have recently been diagnosed with M.E by a neurologist. I did not get any advice or details about the disorder and have been told to wait for a referral to one of the specialist CFS clinics which I understand from the clinic may take up to 7 months. I was not offered any medicines to help with the symptoms.
I have visual disturbance as a symptom to the CFS/M.E. I have difficulty adjusting my focus from a distance to close up. I have difficulty following moving objects. When travelling in a car my Central nervous system seems so overloaded that I go into a fit (full body tremor,head nodding jaw clenching etc.) I have had an MRI to rule out MS,Parkinsons.
My G.P refused to look at a symptom list I tried to show him, when I asked if I could write to the neurologist to ask for a 2nd opinion or a referral to a speialist to investigate my fits the G.P refused and said he would cancel my referral to the CFS clinic if I did this. So any advice information any users/experts can give would be great.
My questions are:
1. I understand there is graded exercise for the body, what can I be doing as a self help exercise to help with visual disturbance?
2. I have heard Sturgeron helps with nausea but what helps with visual disturbance?
3. Should I go to my opthamologist - will he be able to help?
Thanks in advance

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Dr Charles Shepherd
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by Dr Charles Shepherd on Wed Aug 14, 2013 3:27 pm

Re: Visual Disturbance in CFS/M.E-Treatment?

People with ME/CFS do sometimes report visual disturbances, including difficulty with focussing, and when they go to the optician and/or hospital eye specialist nothing abnormal is found.

Without knowing why this problem occurs it's very difficult to start recommending any sort of eye exercises and I'm not aware of anyone with expertise in this area who has suggested doing so.

Yes, Stugeron can help to relieve some types of nausea (especially motion sickness) but it's difficult to see how it could help with this type of visual disturbance.

If you have not already seen your optician it would be worth doing so.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

stonebird
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Joined: Wed Aug 14, 2013 12:49 pm

by stonebird on Wed Aug 14, 2013 4:21 pm

Re: Visual Disturbance in CFS/M.E-Treatment?

We are so sorry to hear of your experience. My wife has Very Severe ME and has complex eye issues, because of the muscle dysfunction in ME she was told the eye muscles do hold their focus, there can also be issues with the tear film causing dry eyes.

Your GP'' s approach is very disturbing. CBT and Graded Exercise, which is what the clinics offer can be
very damaging to people with ME. We recommend looking up Hummingbird, it has a lot of detailed information.

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ChrisofCabra
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by ChrisofCabra on Wed Aug 14, 2013 4:33 pm

Re: Visual Disturbance in CFS/M.E-Treatment?

As an optometrist (retired) and someone with CFS/ME can I support Dr Shepherd's answer...

The most obvious link is with fatigue and, without any new condition in the eye, the eye muscles may find it more difficult to cope with pre-existing minor imbalances, strains and errors of refraction that were previously below the threshold of causing symptoms.
Here I have known small adjustments to produce, sometimes, what would normally be disproportionate improvements.

The ability to refocus for near (accommodation) is often affected, but particularly in terms of stamina, sustainability, which can be missed at an eye exam unless being looked for.

Making the visual world easier and less tiring is another approach to reducing symptoms: Better and brighter lighting, adjustments to posture, reading distance, size of print.
All of these can help with "load-shedding" for eyes when their muscles, as with others, feel and report that they are being asked to do too much.

The possibility of the symptoms being due to conditions other than CFS/ME.should not be simply discounted. Routine eye examinations should be continued with the aim of covering that consideration.

Chris.

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Dr Charles Shepherd
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by Dr Charles Shepherd on Wed Aug 14, 2013 4:38 pm

Re: Visual Disturbance in CFS/M.E-Treatment?

Chris

Thanks for these very helpful practical suggestions

I would agree that fatigue in the small muscles that control eye movements may well be relevant here

Interesting to note that people with ME/CFS quite often report blepharospasm - twitching or abnormal movements in the eyelids, especially when tired
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

mittens123
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Joined: Tue Aug 13, 2013 11:23 pm

by mittens123 on Wed Aug 14, 2013 8:09 pm

Re: Visual Disturbance in CFS/M.E-Treatment?

Thanks everyone for your replies they are very much appreciated.
I do get blepharospasm and sensitive to noise and light etc. The points raised in a different post about dorsal root ganglionitis make me wish more research could be done on the overload of sensation on the central nervous system and CFS/M.E.

It has been a very emotional and isolating time, I went from relief that I did not have Parkinsons Disease (apologies to PD sufferers) to shock and anger at the lack of knowledge research and treatment available for CFS/M.E. I do appreciate all the advice.

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