Dry eyes and TMS

I really need some help/insight. I have been doing mind body work for almost 3months now and whilst some of my pain has reduced in my eyes, gone from an 8/10 - 6/10 they are still painful every second of every day.
They came on overnight a year ago during a stressful time. I have really obvious MGD and severe dry eyes which I worked on trying to get better for 9months before I found this work after realising anytime I was stressed my pain would get a lot worse and then stay worse until I relaxed so I knew there was more going on than just the physical problem. But I guess what I would like is to know of other people who have overcome this, I've seen a few on here but most of them don't seem to have anything physically wrong with their eyes when examined which makes me lose hope as I do. I'm only 31, I have a 3 year old and every day I feel like shampoo is being poured into my eyes, its ruining my life
Through this I have had some symptom imperatives (tension headaches and wrist pain and a very short lived bit of abdominal pain) so I hold onto hope with those things that it is 100% mind body.

 

Thank you for your reply.

I want to to leave behind any doubt and work fully with mind body, I have an evidence sheet as to why its mind body (my symptoms go away 90% in certain situations where I'm extremely calmed, for example sea swimming or having a massage) therefore it simply cannot be structural issues causing my pain.

I've had 2 eye doctors through this who have told me how linked stress is and to work on that first so when I learnt about mind body work I started to question everything, especially as like you probably saw people can be asymptomatic with the same findings that I have.

I have been journaling and following Nicole Sachs work for about 3months now but I feel like I'm just not approaching it from the right angle necessarily, I fit the TMS personality exactly and interestingly so do any of the people I speak to suffering with the same condition, another thing that solidifies my belief.

Any advice you can give me to work with my nervous system and make it feel safe would be so appreciated. I'm ready to change my life for the better.

 

I had considered Nicoles paid programme so I will sign up for that!
She does have one podcast on dry eye but im hopeful now that there's been one more people will start to come forward with this! Who knows maybe me one day when I get where I want to be! Prior to that I have listened to Nicoles book probably about 5 times because I related to it so heavily!

Thank you so much for the link to the questionnaire I will do that today and see what information I get, like Nicole I had a good upbringing but things have definitely arose in my JS that make me realise even though it was fine I still have some trauma.
I have actually just started listening to Dr Sarnos 1st book as reading is too much of a task for my eyes right now so I will persevere with that!

Anxiety has always been an issue for me and with pain it's sky rocketed and I do find when my pain levels are low my anxiety is awful. typical symptom imperative! I will also add her book to my list!

Your information is so helpful and it's nice to have somewhere to go to for support and reassurance. Thank you.

 

Hi @GemmaLeanne

This is my dry eye tale... the bit that I believe you will find encouraging is towards the bottom, but do read the background to my story first...

When you're experiencing TMS symptoms the advice usually is to not medically treat those symptoms in order to tell your brain that you're not being fooled, that you know the symptoms are not physical. However, having experience of and being diagnosed with MGD and dry eye myself (at the world famous Moorfields Eye Hospital in London) I would say that you would be more than wise to continue to do the eyelid margin cleaning to declog your meibomian glands and use daytime drops and nighttime eye ointment (and regularly look away and have breaks from screen use) because when the eyeballs get dry it can actually cause physical damage (I won’t go into the latter because you will, I’m sure, have already read about that)... Whereas, as long as you are not allergic to the drops and ointment, they are not going to do you any harm, nor will doing the eyelid margin warming and cleaning.

My dry eye used to wake me up at night with horrendous burning pain. The brain may cause the symptoms, but the symptoms are very real and if it's causing your meibomian glands to clog up and your eyeballs to dry (and your eye doctors will have seen evidence of this when they examined you) then it's causing your meibomian glands to clog up and you eyeballs to dry and you need to treat to continue to protect the integrity of your eyes.

My own dry eye was a confusing mix... in part it's due to TMS and in part it's caused by a very rare eye condition with fluctuating symptoms that causes me to blink less than other people do.

Because it's TMS and due to a (non-TMS) eye condition that fluctuates in its severity, there have been long periods where I do not need the eye drops or nighttime eye ointment…

I used to keep testing out whether I needed those things by intermittently stopping them for a while but after one particularly bad episode of being awoken again in the middle of the night by horrendous burning eye pain, I always use my nighttime eye ointment and I always wear eye masks at night too (one use disposable ones that I make myself) that prevent moisture evaporation (and these days I only use the day time drops when my eyes start to feel a bit gritty or otherwise uncomfortable)…

Of note is that TMS-wise I am still a work in progress and have other TMS symptoms (non-ocular) that I still have to contend with, so I am not fully recovered from TMS (but I have come a long way… from being bedridden for months on end to function pretty well these days)...

However, that said, what I believe you will find very encouraging about my story is that my meibomian glands no longer get clogged. I don't need to do the lid cleaning anymore, so it seems to me that it was my brain (TMSing) that was causing that (as my rare eye condition does not cause meibomian gland dysfunction, it causes dry eye due to reduced blinking).

It may take a while for you to address your TMSing brain to get it to stop TMSing and causing your symptoms.... So, in the meantime, what I'd say to do is to get your eyeballs as comfortable as you possibly can with the topical measures available (perhaps experiment, like I did, if your eye doctors say it's okay to do so, with different types of drops, and if that doesn't work, they can prescribe ones that are for severe to very severe dry eye*) but at the same time believe -- or at least suspend any disbelief you may have -- that your dry eye is likely to be of mind/body/TMS cause and continue to do 'the work' to reduce your stress, e.g. as has already been mentioned to you, there's the free programme on this Wiki that you could do https://www.tmswiki.org/ppd/Structured_Educational_Program (Structured Educational Program)

* Also, I found that commercial lid cleaners made my eyes sting badly during and after application, so I just used cooled boiled water (and to reduce all the faff around heating up my eyes lids I used this microwavable beanbag especially designed for the purpose https://www.youreyehealth.co.uk/products/blephaeyebag?srsltid=AfmBOoo_satZ2p1AMRIa0EuJik8sG2fABJuIR4Kxt16LTkl6j4-TTTzg (Blepha EyeBag® | Dry, Tired & Sore Eye Relief | Thea Shop)... I'm in the UK so if you're in the US or elsewhere in the world you'd need to see if you can get it or something similar in the US if it's of interest to you).

 

Thank you so much for sharing your story, it's very reassuring. Everytime I use eyedrops I tell myself I'm safe I'm just doing this for temporary comfort in the hope that I'm not constantly re inforcing that the pain is dangerous.

It's also reassuring to know that I can treat some of the physical findings whilst also working on my TMS symptoms.

A huge thing that lead me to believe a lot of the pain is TMS is because whilst having treatment in November last year with a doctor I trusted my eyes started to get better (so i thought) but when my actual eye heath (tbut etc) was checked it was exactly the same, but I'd gone from a 10/10 pain to a 3/10. Upon realising my eyes were still the same my pain sky rocketed again. I'm 100% sure the constant burning is TMS and with time and work the de stressing will take that away and then hopefully in time the oil glands will stop clogging like yours did!

Thats so helpful thank you, I am also UK based to can get that one!

 

I also wanted to add, back in March I had my eye surface numbed and my burning pain remained, so this would be further proof that even though I do have a condition it's not the condition that is causing the pain?

 

Wow that's interesting I'd heard of phantom limb pain before but never understood how/why it happened.
I will add this to my evidence sheet as to why its TMS. I think what's always made me fearful is my eye doctor always says once the pain is in the brain there's nothing that can be done, which has then petrified me and obviously then made it worse (this was before I understood mind body and I thought my entire issue was physical)

Interestingly before my eye issues I was that person who was constantly poorly, I've maybe had one or two illness' in the last year since my eyes started in comparison to one at least every month.

 

What's really sad is at the time is truly believed her. Which definitely increased my pain as it increased my fear massively.
I actually had already decided to move on with regards to eye doctors but I now ask for no negative information regarding my eyes to be relayed to me as any negative results fuel my pain.
When I hear about Dr Sarno in Nicoles book and podcast he absolutely fascinates me, I will continue listening to his books and doing the work that he helped so many people with.

 

And this is exactly why I need a forum like this to tell me where I'm going wrong! I sometimes wonder why I feel like I'm not getting very far and it's because I'm still defaulting back to my TMS brain!

 

Thank you, I have started the SEP and related so much to the video of Dr Sarno on day 1, I'm just listening to one of his lectures on YouTube, so insightful.

 

@GemmaLeanne I recently landed on some affirmations that have really helped me calm my nervous system and be more at peace. It's easier to respond well to TMS if you've done some calming work first during a flare-up! When my (eye!) symptoms really start to flare, I close my eyes and repeat, "Absolutely safe inside myself" and then "Absolutely safe looking out on the world." It really helps me re-enter, then, when I open my eyes, with better perspective and re-engage in life instead of obsessing. Maybe something like that is worth trying for you.
If you've tried affirmations before and they haven't helped you, maybe you need to let your mind wander a bit until you come up with some in your own words, like I did.

 

Thank you for sharing that with me, I have always had quite negative self talk I can see that in hindsight but also for the last year it got a lot worse, that's so interesting that it says to tell yourself you're not in pain even when you are to reprogramme your brain, I will start doing this and coming up with some phrases I feel work for me to say to myself!

 

After completing day 2 of the SEP I wrote down my things that make me angry and sad, as soon as I started writing I realised one of the statements was negative self talk again. I've always held myself to a high standard in every area of my life but especially physically, keeping myself healthy and well presented with makeup everyday, with how painful my eyes are I just don't want to go near them with makeup which in turn makes me look in the mirror and hate myself, I dont look like me, I dont feel like me. Do I need to accept how I look, or just acknowledge my feelings surrounding it. Or just put the makeup on because that would be teaching my brain there's nothing to fear? Sometimes I feel lost on which approach is the right one.