How do sensations change for you? What are your worst sensations?

[lulu]

Hi
I am in another flare of dryness and I am hoping it will die down but from experience I know it is likely to take months at least. The first long flare I had lasted 5 months, the second one lasted 7 months and well who knows how long this one will last.
I am told I have sjogrens which was diagnosed via a lip biopsy. However, back to my question. I have now developed the foreign body sensation that I know a lot of you do have and for me it is a new symptom. The last flare was one of a supreme dryness and the first one was dryness and horrible eye pain. But somehow I found them a bit easier in the end(maybe they just dampened down or I got used to it) but I was wondering if when other folk have a flare, does it keep to that one sensation or does it change? My theory is that the eyes are not dry all over and the dry spots are causing the grit feeling whereas before they appeared to be dry all over. And what sensations do people find more unpleasant? I know that some people do have whatever symptoms all the time and I am wondering if that is now going to happen to me?
If anybody has any coping mechanisms, I would be very gratefull as this is driving me up the wall!
There are so many depressing stories about sjogrens eyes and I have had some probs coping with that outlook as although I am trying to accept my lot, I have not very on top of things at the present moment. I am doing lots to attempt to help this. Sparingly using unpreserved eyedrops as they only help for a few moments, cyclosporin eye ointment for 2 years at night. Moisture chamber specs and I have always worn wrap around sun glasses since my first attack in 2007. Pilocarpine started again last week. Have humidifiers.
Another poster did kindly reply to my other post (had to reregister as probs my end) and he did say that his got better but I am also anxious to know how others fare with sensations as it may hopefully give me some encouragement(greatly needed, struggling now). I have other symptoms which I pretty much cope with as obviously no choice but certain things do help them unlike this.
I have one lower plug and one lower scarring due to plug problem. About to have lower plug cauterised.
Sorry about long post. Any help very much appreciated.
Lulu

[abbygirl]

Hi lulu,
I am sorry you are going thru such a tough time. My dry eye sensations change on an hourly basis...especially after I put my pressure drop in. I am curious as to what you mean by "horrible eye pain." I too have eye pain that is different than the usual dry eye sensations. What does the pain feel like to you?

[Colin P]

Hi lulu,
I am sorry you are going thru such a tough time. My dry eye sensations change on an hourly basis...especially after I put my pressure drop in. I am curious as to what you mean by "horrible eye pain." I too have eye pain that is different than the usual dry eye sensations. What does the pain feel like to you?

Sorry to hijack your thread girls! but maybe your eyepain is similair to mine? i would describe it as, in the area of behind top eyelid (right) and A NERVE (pulsing pain) getting steadily worse. I read a 'tip' from another member and thought crikey thats drastic! but it mercifuly works for me.
He reccomended that "EVERY WAKING HOUR HAVE A 10min 'close eyes break' (even if you think you dont need it?)".
Ive adapted it for my personal use:- Put your eye drops in as usual, blink for 30 seconds- then close BOTH eyes till pulsing pain subsides,(then give it another 5 mins).
I can feel the the pulsing pain start to subside after 5mins and wait till it completely stops. I say Both eyes cos, i find, you cant totally switch off/relax with one eye open.
I need to do this 3x times a day for 15-30mins at most.
THE SOONER YOU DO THIS THE BETTER- AS SOON AS IT STARTS! IF I DONT? IT GETS WORSE AND TAKES UPTO 45mins to subside AND IS MORE PAINFULL.. Inbetween these "eye breaks" approx every 2 hours i run a cotton stick under the tap then accross eyelid margins and between lashes- takes seconds, and gives the eyes a refreshen-up, also removes any possiblity of 'greasy residue' from the Gel drops i use (1% celluvisc) that may be forming a layer over Meibomium glands?. (this was another tip from a D.E.Z member!)

Worst sensation experienced? a 4x day corneal ebrasion i once had. Corneal abrasions i found, need my drops putting in, then upto 45 mins for a corneal 'scratch'
to heal. Putting a drop in- wont instantly work, the cornea has to heal aided by the lubricant drop.

[Hopeful2]

Thanks for the tip Colin! I get pain at the very top of my right eye, to the right side. It seems to be worse as the day goes on. Someone thought it might be eyestrain (accomodative spasm). However, it does seem somewhat better, temporarily, when I add some drops. So my guess is it is dry eye related. . . maybe a recurrring corneal abrasion? When I close the right eye, the left seems bearable.

I am going to try the idea of closing both eyes for a 10 min break. I like the cotton stick idea. The lashes get gummed up with a lot of the drops.

[MaryVa61]

Have you looked carefully in a mirror when it hurts the most, to see if you can see any tiny speck (filament)? Or tried taking a good quality flax oil (the kind that's kept refrigerated, etc.)? Flax oil helps me a lot, and the fish oil maybe too. Experimenting now to see if I do just as well with only flax so not sure yet if I'll need to continue both. I have a lot of pain with my dry eye including (dr said) tiny dry spots that can lead to corneal abrasians, filaments, and previously deep stabbing pains and folds.

I have found that some prescription drops I've been on made matters worse due to side effects and allergies to the meds. Also allergic to ingredients in many facial cleansers, soaps, shampoos, lotions, housecleaning products, etc. Until I dealt with the allergy problem nothing else worked very well for my dryness and pain. Having very little trouble now, except when too lazy to check ingredient label of a new shampoo or other product against my allergy list of synonyms. Same was true of wearing goggles in the car, it's an essential.

[lulu]

Thanks for all your replies. I did type a longer respnse earlier but having real probs with my posts so hope this appears.
I have checked for filiments over time and indeed at the mo and can see nothing. I did have an optho app last week and although I did not actually ask him, he did not mention anyghing. I think it is poss the patches of inflamation. I have already brought some more flax seed oil this afternoon, so will give it another go Mary. Thanks.
The pain I had in 2007 was an all over eye pain on both eyeballs and never really went but was worse when I looked at anything for more than five seconds! Def related to the dryness as eyes were also very dry at the time.
Just hoping that this gritty sensation will change as time trugs along as I think I can cope with the other sensations a little better.
Colin. Perhaps celluvisc is really helping you? But I have to say that over time I have noticed personally my eyes cannot tolerate it. GPs in the uk love the stuff, they are not good at dealing with dry eye patients and to be honest I think that they must think it is all that is available? It has CMC in it which some folk find very irritating, so just something for you to bear in mind, I would hate for you to be doing something that is adding to any problem. Its very plastic and this is demonstrated by the way it dries in your lids!
But thankyou all for your kind support, I am just having a difficult time attempting to deal with it. Do have other probs but this is very annoying. Incidently, I was prescribed Demexathasone steriod drops last week. I only tried them for one day and they made my eyes go ballistic so I weighed up the short amount of relief one is supposed to get from them and decided not to. Generally steroid drops like any systemic steroid can and often will cause rebound problems so I thought ,no, not at the mo thanks.
lulu