Symptoms but no one believes me :( !!

[mary108]

Hi all,
I've been to the eye doctor and been on all sorts of drops and such...last appointment I went to, the eye doctor told my mom he thinks I may be psycho symptomatic...(expiriencing symptoms but he can't see anything else wrong) I really truely believe this is not the case.
My eyelid margins are on and off red, so is the conjunctiva when i lift up my eyelid. My lids hurt alot. My eyelashes are still weak and fall out easily and in some spots growing crookedly. Some oil glands at the eyelashes are clogged as well (he said that was normal...). The biggest thing is my eyelids hurt ALot and some pain in the lid margin. He did NOT even press on my glands to see how easily the oil comes out.. he just said they don't really look plugged.
I'm in pain and no one will lisen and my parents just keep saying they'll make more appointments with the counsler. I still have the plugs in so why arn't my eyes watering if everything is ok?!?? im soooo frustrating, I just wish someone will listen. Does he need to press on my glands to really tell??? I hate this. Please help. Thank you soo much.

[Schatten]

I deeply feel with ya, just because others can't see it doesn't mean it's not there.
Seems like your doctor wasn't really interested in your case, I suggest to look for a better one

Make sure they do tests, so that you have at least a sheet of paper showing something is wrong ... helped me at least to keep my sanity.

And let me tell you one thing: I recently had contact with lots of psychosomatic patients and DES is rare there too ... I find it highly unlikely nor have I read about psychosomatic induced DES, I even googled that if it's known/possible ...

Mary, I wish your eyes all the best, let's cheer us up together

[markdav]

My eyes also look healthy, but dont feel so , so you are not only one

and my parents also dont understand
there is no way anyone can understand until they actually feel it themselves.

[alisonW]

Based on your symptoms....

it really sounds like you have blepharitis and meibomian gland dysfunction (I have both as well). I would definitely see another eye doctor since the one you saw doesn't sound very informed at all. If you're not already, I would do warm compresses a few tiimes a day and then express your glands gently. Also, clean your lids and lashes with diluted baby shampoo or a lid cleanser like Ocusoft. Keep using artificial tears (preservative free) and hopefully you'll get some relief.

[Schatten]

I don't say anymore I have dry eyes. I use the medical correct term "Keratoconjunctivitis sicca" (I think "Blepharokeratoconjunctivitis sicca" is even more accurate, pardon me) just to earn a "What the heck ?" from other people lol

I have both MGD (posterior bleph) and aquaeous deficiency (Schirmer's 3 and 5 mm right/left, TBUT 5 s)

[littlemermaid]

Mary108, How many ophthalmologists have seen your eyes for advice? Is this the corneal specialist dude? What is your current treatment plan? I appreciate you may be an ongoing treatment case like LM, particularly if it's unidentified eyelid margin inflammation like us (whatever rosacea/allergy, eg we can't use lid cleansers), and that some emotional support is essential, but we hope the ophth does this. Just wondering what the plan is, you and your ophth are supposed to be in this together. He may be the best available to you locally, may be not. We were kept stringing along for a year by a 'corneal specialist' before he confessed he didn't know what to do. Then we saw many more anterior segment specialists before settling down with a surface disease guy.

You're right, he should be acknowledging the pain. Can you still access paediatric service? They are more emotionally literate. Maybe get referral through any medic, even school counsellor, for pain management consultation, may ring some alarm bells.

Re 'does he need to press the glands to tell'. Some rare experienced ophth opinion I would trust to diagnose and prescribe on the basis of a cursory exam and chat because they're specifically into this condition, but everyone else I want them to describe what they're seeing, state of the tear film, and write it down so I can assess whether they know what they're doing.

Also you can press your own glands - 2 fingers gently on lower lid upwards under lash line - and have a good look at your oils. Time to take charge, work on your healing and make all this manageable. There will be things you can do to help that the ophth won't be so good on, I keep rereading Rebecca's advice http://www.dryeyezone.com/talk/showt...-coping-better. LM is 14, we are all in this together (hug from London)

[poppy]

Hi all,
I've been to the eye doctor and been on all sorts of drops and such...last appointment I went to, the eye doctor told my mom he thinks I may be psycho symptomatic...(expiriencing symptoms but he can't see anything else wrong) I really truely believe this is not the case.
My eyelid margins are on and off red, so is the conjunctiva when i lift up my eyelid. My lids hurt alot. My eyelashes are still weak and fall out easily and in some spots growing crookedly. Some oil glands at the eyelashes are clogged as well (he said that was normal...). The biggest thing is my eyelids hurt ALot and some pain in the lid margin. He did NOT even press on my glands to see how easily the oil comes out.. he just said they don't really look plugged.
I'm in pain and no one will lisen and my parents just keep saying they'll make more appointments with the counsler. I still have the plugs in so why arn't my eyes watering if everything is ok?!?? im soooo frustrating, I just wish someone will listen. Does he need to press on my glands to really tell??? I hate this. Please help. Thank you soo much.

Hi mary, if it helps at all I believe you without question and I'm sure many many others on this forum believe you. Sorry I don't have any other advice to offer.

[Rebecca Petris]

Mary,

I think you need a better specialist.

If it would be any help I'd be happy to speak with your parents. Wouldn't be the first time. Loved ones often can't understand what DES patients are going through. It's scary for them to see the impact on you when they're not hearing something from the doctor that explains it to them.

There are plenty of people here who have fewer outward signs than you (it sounds like you have quite a few) and who suffer a great deal of pain. That's the classic "sign vs symptom mismatch" of dry eye diseases. You need a doctor who understands this.

The psychosomatic thing is kind of a red herring. Easy way out without finding and treating the real problem. I believe that the mind-body connection IS important to dry eye in that depression and anxiety will exacerbate pain, but the point is that if one is experiencing depression or anxiety in the first place it's because they're in so much pain!!! No one here wants to hurt nor yet makes themselves believe they're hurting.

A doctor who is examining your meibomian glands should press on them gently to see how they respond. If they don't, ask them to. If they don't appear to consider it important, I would find another doctor even if for that reason alone. Meibomian gland disease is a big deal and between your redness, pain and eyelash condition you've obviously got something significant going on there.

Are you doing any cold compresses?

I'd be looking into possible allergy connection. Also re: plugs - can't give you advice, and don't know whether this is the case for you, but something to keep in mind, if meibomian gland disease is not under good control then plugs can sometimes be unhelpful.

[mary108]

Looking forward...

Hi everyone, sorry it toook me a little bit to respond!!! Thank you sooo soo much for all of your responses, it means soo much!!!!
After doing a little research, I've come to a desicion. Well, first of all, I myself, along with alot of other people know of "psychosomatic" as a "all in your head" thing. Being told nothing is there and you're just stressing about it too much.

Well after a considerate amount of research on this, I've found out that something like that could be the case HOWEVER psychosomatic really means that stress is just making your condition worse but also preventing you to get better even from medicines because it's as if your mind is telling your body otherwise and the stress is preventing healing. I've also discussed this with my therapist.
Being under all the stress I have been for many months now, that would *definatly* make some sense. HOWever I know I do have the condition based on all my symptoms and signs so knowing this information now and staying calm, I'm hoping I see a significant improvement. And I still have that follow up appoinment to go to at the end of Novemeber, and hopefully I can ask him questions then and get somewhere.

-Schatten- thank you for your best wishes and that is definatly something I want to bring up to the eye doctor when I go to him again. (getting tests etc)

-littlemermaid- thank you sooo much again for all the encouragement, since March, I've been to 3 ophts. The first just told me I had blepharitis and kinda left me hanging not explaining the condition and what not. The second told me about the MGD, told me to do warm compresses 4-6 times a day for 10 minutes and gave me an ointment but didn't do a follow up cause "he was pretty certain that would work" At the moment I'm still with the cornea specialist and I have a follow up in Novemeber with him...as I said, I' going to ask him more questions on tests and such. My current treatment plan is I've been taking flaxseed supplements for months now, I do warm compresses right when I wake up and clean the lids and before bed and I also clean the lids then. I also do a much better job of not touching them.

Rebecca- Thank you soo soo much for your offer and advice. Like I said, I'm going to wait this next month knowing the information I have now and see how this goes for the next month I think. If I don;t get anywhere in time, I also want to ask my parentsfor allergy testing. However, I would greatly appreciate you talking to them if no improvement in communicating with them is made or my eye doctor appointment was a complete failure or something. Also, are cold compresses beneficial?? would they interfere at all with the warm compresses?? and also, do you think any form of warm compress is more beneficial than the other?? Thank you again!!!

Thank you soo much to everybody!! I really hope I get somewhere. I'm constantly being told by this eye doctor that I probably won have this forever being soo young and everything and all that...but I dont know. I just want to focus on being positive... hopefully it will pay off...

[littlemermaid]

Mary, This is still unresolved blepharitis with painful lid margin inflammation - I think they've tried short-term topical antibac ointment with Dexamethasone, and short-term low-dose oral Doxycycline?

Are you not using any antibacs at the moment, just warm compress? Can you still see OK in bright light and are you using tear substitute drops through the day?

Anxiety and support is one thing - and we know about that - but effective treatment for a specific eye problem is something else. I'm thinking - do you need to wait till November if the blepharitis treatment's not working, unless you are on a course of antibacs or antihistamines? Can you/your parents speed this up, maybe ask whether it could be allergy. A really good ophth can distinguish allergic inflammation from dry eye surface inflammation in the slit-lamp too. I'm just worried warm compress alone's not hitting the spot and he's not clear what you've got. You certainly shouldn't have this forever if he gets on with treatment

[Guest]

Hi Mary,

Sorry to hear you're going through this, and so young too!!

You may want to consider getting your omega 3's from fish oil rather than flax... some people notice a difference, so it's probably worth a try as an experiment for a month or two... Also, if you try one brand of fish oil, and can't tolerate it (ex. nausea, "fish burps", heartburn etc), don't assume it will be the same with all brands... I went through what seemed like a gazillion drugstore brands before I finally found one I could tolerate from GNC (it's a chain of stores selling all kinds of supplements etc.)

Also, if you're not making satisfactory progress in between appointments, I'd call ask your parents if they can get your appointment re-scheduled for sooner... sometimes the doc will be too booked up, but often they can do something for you.

Lastly, I highly recommend the DEWS report:

http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

It's a reputable publication that docs will trust... It's insanely long, but even if you and your parents only read through the chapter on management of dry eyes, I'm sure you'll find it helpful... it may give you and your parents some ideas for treatments to discuss with your doctor.

[jchcollins]

Sorry to hear you have problems with people believing you. It doesn't get much better as an adult. Many times my family just doesn't get what the big deal is with DES. I think they believe me, nominally, but... Hard to make people understand some days it can really ruin your whole day. Keep your chin up.

[JenBainbridge]

I know exactly how you feel, my advice would be to keep pushing.

When I first got symptoms I went to see 2 different optometrists who both told me my eyes were fine as they were just testing my TBUT. I then went to my GP who kept telling me how manageable dry eyes is and its no big deal. I started to get bad anxiety because either no one was believing me or I was going mad and everything was fine.

After a few months of this I did some research and found a opticians that had a practising opthamologist and went to see him and he was horrible!!! Did the Schirmer test for 3 mins and made me keep my eyes closed?! His diagnosis was then that my left eye was 'useless' and my right eye wasn't much better. When I asked him if this could damage my eyes or affect my eyesight I got a shrug and a laugh.

Needless to say by this point my anxiety was through the roof. I didn't sleep for weeks as I was scared I was going to wake up blind and couldn't even look at food. After going back to my GP 3 times I was still told it was my anxiety and not my eyes that were the problem. I began to self-diagnose, huge mistake! I gave myself everything from Sjogrens to corneal erosions, neither of which I have. Eventually on my 4th time he agreed to refer me to the hospital to see one of their opthamologists who was a dry eye sufferer herself. She was very sympathetic and helpful and gave me a proper diagnosis of mild to moderate aqueous deficient. She also gave me a lot of tips she has found help over the years and explained how unlikely it was that my vision would be affected. Since then my anxiety has subsided as has my eye pain.

I don't believe it was the diagnosis that helped me I believe it was finding someone supportive who understood what I was going through and didn't brush me off. If I had settled with what everyone was telling me I'd probably be in a really bad state.

I really hope you find a doctor who understands :-) x

[abbygirl]

JenBainbridge,
I totally agree with you that finding a sympathetic ear can help with the anxiety of this condition (any condition really). I have finally decided to see a counselor who I really like and who listens to me and helps me put things in perspective. I always feel better after I unload on her!! Anyway, you mentioned you got some good tips from your new opthamologist. Would you share??

[mgshutterbug]

Mary, I am so so sorry you are going through all this. Very few people who don't have the eye problems we do, have an appreciation for the pain, frustration, and isolation we have. Thank God you found this website! You will always receive lots of support here, and also have the benefit of other members' experiences and insight, knowledge. I wish you well. And you know what - the counselor may be just the person to talk to your parents to educate them to support you through all this. So it's not necessarily a bad thing to go to a counselor. And they can also give you support as well. I think you might be surprised by how many of us see a therapist/counselor for support. I am among that group, and receive emotional support, assist with problem solving how to deal with all this, and as abbygirl mentioned, they can help put things in perspective.