The Treatment of a Lifetime of Pain

The following is some of my thoughts on the current status of medical care for those in chronic, severe pain by the medical profession from the perspective of one who hurts.

by Cynthia Lott Vogel

At the young age of 23 or thereabouts, (about 25 years ago) I made an unfortunate decision to lift a bag of potting soil to put into my cart at a garden center. A searing red hot stab of pain, worse than I knew existed prior to that moment, shot through my spine. Those moments, where I crouched down on the ground in an agony were among the four most painful scenarios in my life. The other three were hip dislocations...which I've heard is among the most painful of experiences.

There followed, from that moment in Pomona NY, with “my whole life ahead of me,” the beginning of a life of severe pain and subsequent surgeries. Four years ago my severely degenerated spine was complimented by a diseases of my auto -immune system which has systematically been destroying the joints in my body; causing a painful skin disease; and resulting in numerous surgeries to replace the joints which have finally caved in and become unusable. Thus far, this past year, I have had three hip replacement surgeries (and three dislocations which resulted in a repeat of the first of the hip surgeries). I currently need both shoulders to be replaced and my right knee is, I'm very certain, not far from needing a replacement as well. And not far behind that my wrists and all my finger joints will be needing some serious consideration as well.

But all of that is the icing on the cake...The main course is the fact that the Psoriatic Arthritis has also attacked my spine...severely affected my upper cervical vertebrae – which is one of the major causes of death among patients with a degenerative inflammatory disease such as mine...The upper spine regulates heart rate and respiration. If the spinal cord at that point becomes too severely compressed and flattened by the crumbling and damage done to the vertebrae, then those functions will cease. Should that flattening occur lower down in the spine, the consequence is “merely” paralysis. The thing that I try not to think about too much, is that my latest MRI report displayed evidences of flattening and compression in both upper and lower regions of the spinal cord.

But that stuff is in the future. Right now, all I know is that my spine, from the hollow right under my skull down to my tailbone hurts with a pain that I cannot begin to describe to you...so I will not waste keystrokes trying to impress you of the severity of my pain. One thing that I have learned...and it was somewhat of a painful lesson ...is that I am alone in this pain – other than the presence of God, without whom I would have cashed in this difficult existence long ago - but as far as impressing people with my pain goes, or even getting them to have some kind of a grasp on it is a pointless, fruitless endeavor. A total waste of my and their time.

So when people tell me they understand because they threw their back out or strained a muscle a few years ago and they totally know what I'm going through...I do not roll my eyes or throw things at them: although that used to be a strong temptation. And here is why: Pain is subjective. It is completely determined by that individual's experience. And what I consider to be a “7” pain...might in someone else's book be a “10” or visa versa. The only thing that is true is that most people are convinced that they have at some time, experienced the worst pain possible. And who am I to say? Maybe they have.

All I know is that when a pain doctor reads my MRI films and the 15 page report accompanying them...and whistles a long whistle and then wrinkles his forehead and falls silent....I know that HE at least has some kind of an idea....not based on his own experience but based on his knowledge. And when my ortho spine surgeon says to me his normally unreadable face creased with sympathy, “I'm really sorry...there is nothing that can be done surgically any more for your spine...It is too far deteriorated. All we can do is manage your pain via narcotics”...These men know that it is not pretense or being dramatic that causes me to groan when I try to get up to standing after being seated...Or laziness which has caused me to stop working.

And HERE is where the problem begins and the grasp and reach of medicine end.

I have tried every conceivable means of traditional pain relief. I've had an internal morphine pump implanted in my abdomen...and run the gamut of medications through that. That worked for a few short years to buy me some relief...not total, but some.

I've tried every conceivable pain medication as well as naturopathic resources such as herbals. I've been on drugs that are reserved for end stage cancers and other extreme situations (and I hate to confess, am still experiencing that route.) I've had epidurals where the attempts failed because they could not even find an opening in my spine (these are the openings through which nerves travel, which my arthritis has narrowed to such an extent that there is not even room for the nerve, let alone a needle.) big enough to gain access into which to inject the medication.

So my doctor told me sadly in my next appointment with him, “There's nothing left but to manage you with drug therapy.” He had just ruled out the insertion of a spinal stimulator when I reminded him that when the intrathecal pump was removed, it resulted in encephela-spinal meningitis which had almost ended my life. I have this horrible habit of getting severe infections, and this makes the insertion of any foreign body into my body very dangerous.

So what does this have to do with anything...? Am I simply trying to dredge up some sympathy and to “have my say”?

No

I'm trying to give you an idea of some of what a chronic pain patient may go through. I have chronic intractable pain. That means that nothing really relieves it. It means that no matter where I go or what I try to do, I will be in pain, and will pay the price of more pain after attempting any activity. It means a constant sense of aloneness...knowing that no one is there understanding or going through it with me...except for God. It means that I must gauge my limits for every single task or outing that I try to do or go on....And that, as always, there will be a severe price.

And this is my point. (finally):

It is bad enough to go through pain. It is worse to have some doctors disbelieve or doubt or question the intensity of your pain...or to have them base their assessment on my impassive schizophrenic face and conclude that I can't be hurting very badly. (I thank God for the gift of MRIs to validate us!) It is also bad to have people think, as I said, that they know or that their pain is worse,...when it is very hard to imagine that one bad disc could be worse than currently: 4 current herniations, 6 fusions, and severe arthritic damage at every vertebra. (And that is totally disregarding the pain of destroyed knees, hands, shoulders and hips....) (My apologies, I'm doing what I always try very very hard not to do; comparing my pain to that of others.)

It is horrible to lose consciousness for some other medical reason and to have the ambulance's EMTs look at your scarred arms and immediately assume: "JUNKIE"-- and to start the Narcan flowing...(which is a drug used in emergencies to give to people who have overdosed on Barbiturate medications...It makes them so sick that it pulls them out of unconsciousness. And then for them to say to you , “see you got sick, that proves we are right. “ All it proved was that I had a pump in my abdomen dispensing Dilaudid...or that I'd taken my prescribed pain meds that morning.) This has twice happened to me thus far. And when you hear the venom in the voices of ambulance drivers and you see and hear the disgust expressed by health care professionals at the very first knowledge that you take pain medication....the sense of injustice I feel is beyond all description.

My pain doctor has told me over and over..(and he has not been the first one) : that I must take my pain meds as prescribed 24/7...and that yes, I will become medically dependent on them. But no, there is nothing wrong with this. It is just like a diabetic needing insulin. No different. NO more shame than that. Well, tell that to every ER doctor I've ever encountered. These men feel that it is their God-assigned duty to singlehandedly rid the world of the scourge of addicts and users and this, in their view, includes every patient who suffers with chronic pain. If you have the misfortune of being admitted to a psychiatric hospital, you can be sure that all of your pain meds will be removed or lowered to such a ridiculous low, that your physical suffering will far outweigh your mental anguish. My pain doctor said to me, “That's why you have me. To tell these people that you have a legitimate need and that you are suffering.” Well, sweet man....you are NOT available in every hospital I have or will land in. And at the very first indication that I'm “medically dependent” on pain meds, you can be sure that it will be every staff person's personal calling to break me of my “habit.”

The stigma is huge.

The disgust is real.

Is there a drug problem? YES.

But are pain meds a legitimate medication? YES.

Are they legitimately necessary for some people? --as much as I HATE to admit this and as much as this answer galls me to be among this category of people: YES.

I've fought for the past 25 years against taking pain meds. Yes,I've taken them, because without them, I would not have survived the agony I am in. But I've taken them sporadically. And I've avoided dependence...until my hospitalization last month for my third hip surgery. And when I got home, I discovered, to my horror, that without them, I suffered from withdrawal. And if it were as simple as denying myself the meds (as some of these doctors seem to think it is) ...then I certainly would. But that will not make the pain go away. It will not bring my blood pressure down from 145/90. (It is driven up there when pain is intense...which is most of the time).

This is a huge quandary: One which every pain patient should be prepared to face. I don' t know what the answer is. Maybe it's getting your pain/related health records in microfilm and wearing them around your neck on a chain. So no matter where you are ; you 'll have PROOF. I wear a med alert bracelet that is similar to this...it hold a USB which can be plugged into the computer and a list of your doctors and your medicines and your conditions are all documented. That is somewhat of a solution..I wish I could also put my MRI on there. So it could be viewed by the docs themselves, when the ambulance drivers unload me from the rig and wheel me into the ER they will know what they are dealing with and talking about ...and the ER docs won't be forced to rely on stigma and prejudice to guide them as they treat me.

I don't have the answer. But an end to ignorance and some education for some of the medical professionals including nurses, would be a huge boon. And for those who are hurting to have a voice. I would also advise those who are new in their walk of pain, to learn to anticipate such reactions and to try to find ways to circumvent them. Having a medical ID bracelet such as the one I described with the USB in it, through which your doctors can be contacted, is helpful. Finding a good and a sympathetic pain management doctor is critical. Also do not rule out non traditional means of help. I've found a good massage can often be more helpful than a pain pill. And you may find that acupuncture or hypnosis may take the edge off also. Don't give up the fight. Don't quit your search. And never give up hope.