Why are we told to "just deal" with our pain?

[autumnn]

Hi All- I am just wondering why our pain- severe dry eyes- is not treated with the seriousness of something like migraines or severe back pain, arthritis, etc? From the other people I know with chronic pain, they are sent to pain clinics and offered many different routes to "manage" their pain. Many I know have taken something like back pain from a "9" down to something like a "3" with medications, patches, etc. Everytime I talk to people in pain about my chronic pain they tell me to ask the doctor for "something for it". Well, I tell the eye doctors and they just tell me to try things that I have done that have failed (drops, scrubs, etc) but there is no urgency to bring the pain down in the meantime. It is confusing to me- are we just expected to live with excrutiating pain in an area as sensitive as the eyes?

[kitty]

The eyes are not like a back, a knee or a hip. You can't apply ultrasound, massage or a tens unit to the eyes to make them feel better. I think its somewhat uncharted territory for pain clinics. I guess if I found something to ease the pain I would be a rich woman. Pain clinics can cost up to $20,000 or more. They include, PT, OT, counseling, education and often times vocational counseling. I suppose there may be some aspects of a pain clinic that we could try, like counseling to help us cope with it. I have never heard of physical or occupational therapy for the eyes. They tell us to deal with it because they don't have anything else to offer us.

[GinaJ]

Hi. Well I suffer from rsd,peripheral neuropathy that has sent me to 4 PM docs and one pain day prgram and my pain is unmanaged to such a high degree that I am unable to work etc and often cry through that pain daily. In addition though I understand cause my severe eye pain from the dry eye and bleph has been unmanaged. I guess my thoughts are a lot of techniques that are offered for other chronic pain can be done here but one I guess has to take more initiative. Such as going to therapy,biofeedback,etc. Many of the day programs for pain that I know are about extreme physical therapy and ocupational which the occupational maybe of benefit but extreme pt I am not sure. I will say the support of others is so helpful.As for pain control I am at a loss cause I have had many meds and treatments but I guess trying to find a doc who will work with you though I am on my 7th eye doc and no luck just like my pm docs. I know many here and I understand about feeling unheard and brushed off but even with my other health conditions I feel that. Unless you suffer from chronic pain or are very close to one who deals with it is hard to know. Hang in there

[mary kenny badami]

Hi, autumnn (and others who've been frustrated by this) -- great question, and here's my take on it:
Rebecca Petris sponsored a conference several years ago which featured some docs and other experts discussing our dry eye problems.
I particularly learned a lot from Dr. Sandra Brown, herself an eye doctor, who was one of our presenters.

Below is a link to a long thread here about that conference, which includes comments by Rebecca and Cindy and Lucy, among others:
http://www.dryeyezone.com/talk/showthread.php?t=1143

Rebecca wrote, in part:
"Expecting from the eye doctor things s/he just can't give leads to frustration on BOTH sides. Something one of the doctors also alluded to at one point is that it really isn't any more fun for the doctor to feel like they're always disappointing us than it is for us to feel disappointed by them. It is natural for them to dread seeing patients who are chronically dissatisfied with their performance."

And I wrote, in part:
"Dr. Sandra Brown's section, 'I Speak Eye Speak' began by challenging us as patients to realize that we probably cannot change who our eye doctor is, how our eye doctor thinks, nor what our eye doctor values, so that our energy might be better spent in bringing the best information to help them help us. She said something like this: without invasive surgery, your cardiologist can't look at your heart, so during an ordinary visit they have to ask how you are feeling; but "we" can look at your eyes, and so "we" are likely to value "our" numbers and examination data more than whatever you are telling us. (Earlier in the day, she had said: the training of us as doctors is very defensive, we are trained not to acknowledge your pain, not because we don't want to deal with your pain, but because we don't want to deal with your emotions . . . )"

My personal take-away from this was that if my doctor is by temperament and/or training expecting to be a "fixer,"
and if I show up as a patient with a problem that they cannot either "see" or "fix," they are likely to send me away and tell me to "just deal with" whatever I am complaining about.

Frustrating, yes. But I got a lot of insight from Dr. Brown's effort to help me understand the mindset of my doctors in general, and my eye doctors in particular.

[Rojzen]

We are the engine, and pain is finally being addressed in some quarters

What an important subject! On the other hand, there have been dozens of posts here at DEZ about the treatment of the pain associated with our dry eye, and a search through these will show that some of our members are already receiving treatment through pain clinics and/or through our ophthalmologists for the burning and other types of pain that come with our syndrome.

I have to differ strenuously with the view that pain management physicians can only be accessed through exorbitantly expensive programs. There are quite a few pain management docs my own HMO, and, I suspect, in most plans, and while extra referrals are often required for pain doctor visits (usually just to get to the first visit, but not subsequently), if one has insurance, it may be quite straightforward to get to a pain specialist.

I began to have my dry eye pain treated at the Johns Hopkins pain clinic over 5 years ago, with some major success. Prior to that, I sat my internist down, and convinced her to try to treat my dry eye pain, since my eye doctors couldn't have cared less about it. She did remarkably well for me, using simple amitriptyline, a drug that has been covered extensively here in posts.

I agree STRONGLY that most of our cornea doctors don't acknowledge our pain, let alone show an interest in treating it, but times are finally changing. We have, for example, an ophthalmologist here in Baltimore, with her residency at Wilmer, who expansively addresses pain on the first visit, and then uses topical treatments (the more powerful ones, temporarily, to avoid cornea damage) to get patients started on pain relief before longer-term, chronic systemic medications kick in. She talks to a patient's internist and /or pain doc, and urges them to try Lyrica or another anticonvulsant with a good record in neurogenic pain management, this owing to her belief that the eye pain many of us experience is attributable to subtle nerve damage, rather than to inflammation.

As someone recently disabled (but now much better) from the agony of spinal problems, I know that indeed it is not terribly straightforward or easy for many of us to get significant pain relief from drugs that are safe to take for long periods, or from manipulative therapies or even surgery. . .Some of us do not even respond to controlled substances, for the kind of pain we have. But, if one can partner up with a strong and healthy friend or family member, or plow through the literature and make the contacts on one's own, one can at least be assured of identifying many, many options to try. It does take some deftness to access newer and more innovative approaches from inside a health care plan, but this is not impossible, and is getting easier.

Right now, I am weaning off pain medication as I get deeper into trigger point therapy, for my spine. And I did the same for my eyes, some time ago. When Restasis first came out, I had been on amitriptyline for a few years. Restasis did nothing to change my tear film, but it did reduce my burning ocular surface pain. Ultimately, I stopped the amitriptyline for the eyes, and stuck with Restasis. When I discovered Dwelle, I weaned off Restasis quickly, and found complete pain control through Dwelle, the point being that we are the engine that drives encounters with new and better pain solutions (pun intended (:^)).

And we can vote with our feet! Last year, I tried a new ophthalmologist who yawned through my account of how Dwelle had totally eliminated my pain, and enabled me to function without moisture chambers. I handed him literature from Dr. Holly's web site, and the crass creature refused to read it, and simply stuffed it into my patient file, while I watched. Months later, that doctor's office called to ask me to schedule followups (I guess that his Lasik business wasn't as lucrative as he had hoped), and I made it very clear that I was not coming back, and was situated elsewhere.

Many eye doctors work through institutes and hospital groups, and don't need our business. . .But if we cannot exert pressure through our choices in this area, we can still do the following: Brag shamelessly to an ophthalmologist or optometrist who refuses to treat pain about a friend or associate, here at DEZ, who has gotten relief from a physician through direct acknowledgment and treatment of eye pain. At some point, I think it is possible even for doctors to realize that they are on the wrong side of the curve when it comes to their treatment outcomes. . .

To find other posts on treatment of DES pain, it may be useful to search among nutritional supplements, prescription medications, and prosthetics, in their respective categories. (I've written about the supplements Lithium and DLPA for pain, and also about a large number of different pain medications that could potentially touch our eye pain. Other members here have contributed far more in both these areas.) That last category (prosthetics) may surprise, but for some, wearing protective eyewear significantly reduces burning and other eye pain in dry eye. . .

[gary]

I got so aggravated yesterday,I went to my fifth ophthamalogists ,simply because the one that I have been seeing is a three hundred mile round trip
to go see.

He said that he saw where I had been to several doctors before him and that
he probably couldn't do anything else for me,that dry eye was something that I had to learn to live with.I told him that I just wanted someone closer to start seeing me,and maybe that he could,maybe make "just living with it" a little easier.

I have no idea what tests that he ran yesterday,or what the results were.when I started asking questions,he said looks like that you know more about dry eyes than I do! ( I think that he said that to be cute) He was the most unconcerned doctor that I have ever been to.

needless to say he will not be getting any more buisness from me! I felt like jacking his jaw for him and telling him just to" deal with the pain!"
but I didn't want to get a free ride downtown!

I am not going to give up on trying to find a good doctor,I guess they are out there just finding one is the problem.

Gary

[Rojzen]

across the Kentucy border

Gary, I know you have already traveled great distances, only to be treated with neglect and even derision. . .but if you live anywhere near the Ohio border, would you consider trying a dry eye specialist at the Ohio State School of Optometry in Columbus (not too far from Dayton)? I have had a good experience there with the head of the Ocular Disease program, and one reason this optometrist takes dry eye seriously is because another optometrist at that School is working on some ground-breaking research to identify the fatty acids that compose human meibum. . .(The latter is Kelly Nichols.)

On the other hand, working with an optometrist is not a direct route to getting an integrated approach for pain, in that optometrists are not as likely as ophthalmologists to connect with pain specialists in order to arrive at an integrated approach in a given case. .

But at Ohio State, if you saw the right person, I think you would get a decent workup and explicit diagnosis. . .

Do you have burning pain, btw? and are you currently using steady eyewear protection (indoors and out)? Please forgive if you have already addressed these questions in earlier posts...I also wonder if you have been using Dwelle for any extended period of time, regardless of whether your primary diagnosis seems to be aqueous or lipid deficiency. . .

[gary]

Hi Rojzen
I map quested columbus,its 420 mi,and dayton is 370 mi from me.I live in Paducah,you probably never heard of it. You know I would travel 2000 miles
if it was a one time thing,but you know as well as I know this is a long drawn out process. I have been seeing a doctor in Nashville(Vanderbuilt university)
which is a 300 mi round trip for me.She is no doubt a very smart woman but she keeps it all to herself! I would like to find a doctor that would explain every step to me and the results of all tests.


You asked about burning pain,I don't think so,The best way for me to describe how my eyes feel is like I have been without sleep for two or three days,sometimes they kinda itch.. and yes I wear sunglasses with a seal around the frames,for the wind,and the light,my eyes are very light sensative.
Yes I Have used Dwelle drops and the other the red drops,I think that it was Daktrina,but didn't see any improvement.

I don't know whether you read my original post or not,but my troubles started when I got the shingles on my forehead and in my eye,or so the doctors said thats what it was.I never had any big sores,like most that I have see,just tiny blisters on my brow,prior to this no amount of wind or sunlight bothered me.

She keeps saying that the dry eye is age related,but I don't think so,I am 59 yrs old,in pretty good shape and was pretty active until now,this condition sure changes things. I have three older brothers and none of them have this problem.

March 07 is when this all started,the first eye doctor said that my schimmers test was 5,he never metioned TBUT,and I didn't ask because I didn't know anything about dry eyes then.At a later date and another doctor I found out that my TBUT was 4 . If you want to know anymore,maybe we ought to PM
These conversations can get quite lenghty!

I wished that some of these doctors could sit behind our eyeballs for a week or two,then they might be a bit more compassionate! I hate hearing that,You are going to have to just live with it.

Hope all is well with you
Gary

[Rojzen]

Thank you, Gary, all is well here, yes. I believe that it is very possible that you, too, will transcend the awful state you're in, and find the kind of relief that I have.

This is the first time I'm encountering a chronic dry eye report after shingles, and I sense that this is, in itself, very worthwhile fleshing out. It is a cliche that shingles can cause damage to the optical nerve, and penetrating/stabbing pain in and around the eye (hugely severe) during outbreaks, but now I want to know if research has paid any attention to ocular surface effects and pain that may follow shingles.

A TBUT of 4 is not great, but for some, it can be sufficient for comfort. It is good that you don't have burning pain, which some feel is a neurological response to long-term rapid de-wetting of the ocular surface. Maybe that confirms that the TBUT is not a direct cause of your pain. A low Schirmer's, moreover, is also, by itself, neither here nor there, when it comes to how much and what kind of pain you have.

I'm glad you have ventured into the Dr. Holly drops. The first time I tried them, which was only for a week or two, I gave up quickly, and resumed Restasis. It was only on a second try, when I had decided I could not continue Restasis for a 5th year, that I gave Dwelle a really good chance, i.e., 7 months, before passing judgment. It was only in the 7th month that my tear film stabilized sufficiently so that I no longer needed moisture chambers.

Your light sensitivity may be a clue in its own right. I know of no research that attaches photophobia to a particular treatment for dry eye, but it could be very good that you have this persistent and specific symptom to work with, in terms of pinning down strategies.

When you had the shingles, did your doctor(s) prescribe any neurogenic pain medication (in addition to, perhaps, an anti-viral)? If so, can you recall whether it helped the kind of pain you were having then?

All of this is not to overlook, of course, that the timing of your dry eye after the shingles may be coincidence. It would be silly, I think, not to begin by assuming a causal connection, but in the end, that connection may not be what gets you to your fix.

It's true about the need to return to one's dry eye physician often, making it best to have your doc close by. . .On the other hand, would you be willing to travel about once every 4 months? I ask because that is the schedule I was usually put on when I traveled around the country for care. If this is possible for you, let's exchange PMs about the doctors I know and like around the mid-Atlantic region, while you peruse the Plug-A-Doc listings for the many others elsewhere in the country. . .

[gary]

Hey Rojzen
First,I really don't want to commit to a long distance trip to doctor,even if it is every 4 months...Someone on here recommended a Dr. Foulks in Louisville,Ky. I think it was Nyer..If I can't find one around here closer then I probably will go see him,225 mi one way... I really want one close just in case I need something quick like a plug half way out scratching my eye.

By the way I had the two lower plugs put in about a month ago,and I think they are helping,I also started taking omega 3 flax oil and a good multivitamin
so I really don't know which is helping.The only thing I can see the plugs and I think that the right one is rubbing my eye just a tiny bit,of course the right eye is the one that had the shingles in it,or it could be the inflamation making it feel that way.The left side feels a lot better.

Yes,the first ophthalmologist in mar 07 that said he seen the startings of shingles on my forehead gave me Famvir, an anti viral and also a medrol dose pack..These blisters were so small I could not even see them with the bare eye.What I have read that if you get an anti viral within the first 72 hrs.it would greatly reduce the severity and length of the rash..I never had any big outbreak of a rash.

I just had two episodes of a severe burning on my scalp,severe enough it brought me to my knees,felt like someone poured a hot liquid on my head,and they were within the first week. The only thing that I have now,other than dry eyes is what my GP doc calls PHN ( post herpetic neuralgia). He gave me Loratab,Lyrica and later Neuratin for that which I quit taking after a couple months cause all I wanted to do is sleep and seen no difference in the odd feeling that I still have in my right brow. Its not a pain it feels more like a tiny charlie horse in my eyebrow,and my forehead on the right side still itches every now and then.

I also have a cataract in my right eye of which was caused by the prednisolone drops that the doctor in Nashville has had me on and off for nearly a year,they seem to get rid of the herpes zoster in the eye for a while then after I have been off for a month or so it comes back. She said that I would probably be on them for a long time to get rid of the zoster.

Well I will stop for now

I am glad to hear that you are doing good!
That gives me hope
Gary

[Rojzen]

appreciate the details

Thanks, Gary, for sharing more about the herpes episode and treatments you received for it. I didn't previously realize that you had infection in the eye, as well as around it. Certainly a prolonged eye infection of any kind will produce irritation and disrupted tear film for a time. It seems very wise that your doctor intervened so quickly, and that you are restarting prednisolone to prevent damage from inflammation whenever there is flare up. . .

Interestingly, my Mom had a cataract removed some years ago, after which she experienced prolonged ocular surface irritation. Her doctors were at a loss as to how to help, but lo and behold, she is now completely symptom free in the previously affected eye. The problem persisted for quite a while, and so here is another example of someone recovering even after a diagnosis of chronic irritation. . .