Does anyone else have weird eye symptoms?

Hi all,

Sarah, it's so hard to know what might be causing your symptoms. You've said you have had some eye tests and my only question is, did you see an optomotrist or opthamologist? Opthomologists are medical doctors who have more training and might know more about your eye problems.

A lot of the symptoms you described are part of cfs, but the hard thing is that they are also present in many other illnesses, which is why getting a diagnosis can be a painfully long process. As you know, I'm not a doctor, so these are only my thoughts. The two things that come to mind for me are: have you been tested for MS and have you been tested for Lyme Disease? There was a time when docs thought I had MS, so I read a lot about it and some of the first symptoms can be eye problems. I have no idea what the docs have tested you for and what they have ruled out.

Hang in there. I know how frustrating all of this can be. It took me years to get an accurate diagnosis and I went through several doctors too. Let us know if you have any other questions.

Take care

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Hi,

thanks for your reply.

I have only had regular eye tests at the opticians, just the standard test you have to determine which glasses you need.

I am seeing an endecronologist on monday, i've finally been referred by my doc after he admitted he knows very little about CFS, and after years of going to docs and being told my blood tests are normal so there's nothing wrong.

Yeah i'm worying about MS too, but having read through the symptoms of CFS and MS about half of it seems to fit both and half of it doesn't seem to fit anything. It's so frustrating, i guess i just need to know what i'm dealing with, it's like trying to fight an invisible enemy.

 

Anyone elses experiences of these symptoms would be appreciated,

thanks, Sarah :o)

Also, is Lyme disease the one that people get from tics? forgive my ignorance!

Yes, Lyme is the disease that comes from tics, but I've learned from people at the Lyme forum that you don't have to remember being bitten or getting a rash. Also, I think a lot of the lab tests for Lyme are unreliable. If you go visit the Lyme forum they can tell you the specific labs that run the most accurate tests for Lymes.

I'm glad you are getting to see a specialist and I hope you get some answers or at least a little more direction.

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Thanks Hippimom,
again excuse my ignorance but do you know if Lyme disease is caught frim ticsa in the UK too? i've never heard of it so i'm wondering if it's something that is spoecific to certain areas?

I have had eye pain, they just ache, and are very sensitive to light
but i was thinking it was from sinus pressure?
i have also been having problems with too much mucus, i have been having lots of drainage with my last bout

but i have not been diagnosed as to what i have
sorry im not much help

Have you ever had a Lyme test! I had many of the same symptoms and i'm only 25 and it turned out to be Lyme Disease and like the majority of us Lymies I dont ever remember a rash! You should check out the Lyme board I'm sure you could relate to many of us in there!

I have had many eye problems in the past.........Mine began as having blurry vision with floaters. Mine would linger for months before stopping. My vision changed 3 times in a years time and had the eye doctor quite worried.

After that year of issues, new symptoms began. I had light sensitivity so bad that I could not stand being in bright lights. I wore dark sunglasses but they made me dizzy.

Then the floaters came back and my RX changed yet again. Then my eyes got better and then worse. Back and forth. Now I get bright flashing lights like super bright silver flashes. Also, if I happen to look at something bright and then look away, the image is burned in my eyes for awhile.

I just found out I had a positive Lyme test from 2006 and believe this is what has been causing my eye problems for the last 12 years. I will be getting treatment in early December.

Here is a small list of what LD can do to the eyes:
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Eyes/Vision

Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes
~~~~~~~~~~~~~~~~~~

Your other symptoms resemble LD as well. I wish you well in finding help and treatment soon.

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Sept 1995:First Start of Lyme Disease Symptoms w/the Rash ~ No Proper DX
March 2005:Dx of CFS, FMS and Hashimoto's Thyroiditis
March 2006: Positive Lyme Test w/o Proper DX or Treatment
December 2007: First Appt w/LLMD

For about three/four mo I have been getting alot of headaches but also what I call eye sccket pain. To myself it feels like I have a headache in my eye sockets...should I have this mentioned to someone? Uff'da
PS. I have Chronic fatigue and fibromyalgia too

Hi kota, I would definitely talk to your doc about your headaches. I get the same type of headache and it's awful. I get pain in my forehead and behind my eyes and it hurts so bad it feels like my eyes are going to pop and explode. Mine seem more related to my lupus, but it could be a thing that's related to cfs or fibro too.

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Thanx hippimom...when u have soooooo many things going on, one forgets to ask/tell there doc. Have a goot day. Kota

Yes!  Now that you mention it, yes I do.

Increased sensitivity to bright light

and a strange 'pressure' behind the eye socket, i assumed it was some sort of sinus irritation

my eyes also get 'tired' for lack of a better word, it feels like it takes additional 'effort' to look left and right

no vision problems and the pressure feeling comes and goes.  I did just recently read an article about a link between chronic fatigue syndrom and chronic sinus problems, i'm wondering if the eye pressure is part of that.  I've got a follow up with my specialist and will plan to bring that up as well.  I'll let you know what he thinks.

I too have problems with my eyes

I haven't been diagnosed with Fibro or CFS yet though


I have what the OP is explaining. also my eye sight is horrible. I've been to both types of eye doctors, numerous times. I was diagnosed with a refraction disorder NOS (which means they don't have any idea why I have so many problems with my eyes). I get those crappy NOS Dxs all the time!

my eyes twitch and jump, cross and go blurry. also my left eye doesn't flow smoothly, my gaze is off.

Post Edited (IzzieBee) : 11/25/2007 6:57:41 AM (GMT-7)

Hi!

I haven´t read through the other replies so I might be repeating what someone else wrote. It is very difficult for a layman to "diagnose" what you have so you really have to go to a doctor and get referred to specialists. The eye movement you speak of doesn´t happen to everyone with Me/cfs but to some. It could me nystagmus. One girl I spoke with who had nystagmus said the damage in her case was from a virus and that damaged a part on the back of her head and leading to nystagmus. But she didn´t have the other symptoms you are mentioning. If you feel the pressure in the back of your eyes and temples it could or could not be some infection in that area. Many lyme patients are complaining of ringing in ears, perhaps you could do some testing for that later on if your doctor can´t help you. Babesia which often accompanies lyme especially gives eye problems. There are probably other infections like virus infections that could cause the same symptoms, if it´s an infection in the first place. Some people can also get microscopic parasites of other kinds that can give similar reactions.

Maria

Yes I have all your symtoms and more and after 2 years of being told I have cfs/fm I found out I have lyme disease, get tested through IGENEX labs to see if you have it and remember you can have neg test and still have it. if you have had it for a while the tests are neg alot of the time becouse it hids very well.