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Another invisible condition whose patients aren't believed

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Really interesting. It is a long article, so maybe it's okay if I quote a bit here for those who don't want to read the whole thing. It realtes to 'dry eye disease', which can be very nasty (I've had a taste of it).

The links between corneal nerves and the brain may be more difficult to study, but Galor says most treatment strategies based on the prevailing understanding of dry eye disease haven’t shown a sufficient connection between treating the signs and resolving the symptoms. Other efforts have recruited patients who may be suffering from vastly different conditions. “We need to rethink the biology of dry eye when we design our studies,” she says.

....

If he can secure funding, Borsook hopes to conduct an MRI imaging study of LASIK patients that might show differences in the brains of those with chronic eye pain. “There’s certainly a neuroscience interest in it,” he says, “but the biggest thing is, can you help patients get to a point where doctors believe them?”

That point cannot come soon enough for patients who tell remarkably similar stories about being accused of lying, of having psychiatric issues, of wasting their doctors’ time.

For these patients, “there is nothing that is more damaging to their psyche than being dismissed and invalidated by eye doctors, and they’ve all been through it,”, Neil Brooks says. Doctor after doctor told him that because he had tears and an intact tear film, his severe pain couldn’t be as bad as he described. “And I had to come up with comebacks,” he says. “I found myself never making progress on why my eyes might hurt because I was spending all my time trying to convince a doctor that [they did].”

In the absence of help from the medical community, Facebook has become a vital hub for many patients to share tips, encouragement and information.QUOTE]
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I have dry eye syndrome but not to the point where I beee punctal plugs. At its worse it felt like gravel was in my eyes

I learned you need to go to a specialist who understands DES, no just some doc. There is a forum for dry eyes which recommends doctors.

I can't remember the name. Dry eye zone?
 

brenda

Senior Member
Messages
2,266
Location
UK
I have dry eye syndrome but not to the point where I beee punctal plugs. At its worse it felt like gravel was in my eyes

I learned you need to go to a specialist who understands DES, no just some doc. There is a forum for dry eyes which recommends doctors.

I can't remember the name. Dry eye zone?
Yes that's it. It's the best forum for eye problems.

I have dry eyes and get the pain that is described, and my gp is not interested and just handed me some ointment which is useless.

The problem l have is that the dryness becomes severe overnight, and the slightest movement of the eyes on waking rips the top off the cornea and it is unbearable so much so that you are scared to go to sleep.

I control it with a silk eye mask and natural drops without preservative which helps avoid long term extra damage.

I guess l was so used to medical neglect regarding ME that a bit of extra disbelief was just another day.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I use a gel at night and drops throughout the day.
It amazes me now that I experience this how such a seemingly small thing can be so very uncomfortable.
If I wake up in the night I often redose since I'm awake anyway.
I've never even bothered to tell my GP.
SIGH. I want this to be over.
 
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alkt

Senior Member
Messages
339
Location
uk
:jaw-drop::aghhh::depressed:

They never learn, do they? ugh :bang-head:
unfortunately the stabbing pain in the eye is one of my m.e symptoms as well as less severe sensation of swollen dry and gritty eyes. luckily i only have to rest my eyes for symptoms to abate. and yes it would be the last straw if these symptoms were unremitting.
 

alkt

Senior Member
Messages
339
Location
uk
I use a gel at night and drops throughout the day.
It amases me now that I experience this how such a seemingly small thing can be so very uncomfortable.
If I wake up in the night I often redose since I'm awake anyway.
I've never even bothered to tell my GP.
SIGH. I want this to be over.
check your eye drops do not have the preservative mentioned in the article mentioned in the first post.. and may i ask if you get small blisters on the inside top of your eye lids they are really irritating to.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
check your eye drops do not have the preservative mentioned in the article mentioned in the first post.. and may i ask if you get small blisters on the inside top of your eye lids they are really irritating to.

No to both Q's. Thank goodness. Small blisters doesn't sound too good.
 

anciendaze

Senior Member
Messages
1,841
There is a different condition which produces severe pain in the eye, optic neuritis. This has a strong association with MS, so that patients who have had such symptoms once are suspected of developing MS later, which affects insurance. Doctors tend to believe this one, because lesions on the optic nerve are large enough to show up on scans. There is also a classical sign of a damaged optic nerve which can be seen by looking in the eye, the place where the nerve connects to the retina changes color.

Patients with definite evidence of a a lesion on the optic nerve, but without lesions in other parts of the brain, remain in a kind of limbo until their status changes. They aren't said to have true MS, but the risk of developing MS is substantially higher.