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Chronic Pain: The Illness That Doesn't Exist


I live in pain. Constant, never ending, debilitating, and any number of adjectives that don't come near to describing any of the ways I feel on a daily basis. Clinically speaking it would be called acute chronic deep pelvic myofacial pain.

From early puberty onwards I had been afflicted with on again off again pain in my lower right abdomen. It has been diagnosed over the years as everything from growing pains to Irritable Bowel Syndrome (which seems to be a catch all doctors use to explain away anything happening in the gut they don't understand at the moment). It wasn't until the fall of 2001, when the condition turned from sporadic to chronic, that a doctor took the time to try and find out what was going on.

I had been admitted to hospital for the fourth time in six years because of the pain, and after keeping me in for a week of observation, they as usual had released me. But this time the surgeon kept following up. He ordered out patient after out patient test; some of them saw me having to travel out of town because other wise I would have been waiting a year. But after undergoing every single gastro intestinal (G.I.) testing torture (procedures they call them, but if you've ever undergone G.I. testing I think you'll agree with my assessment) and finding only one thing physically wrong he was as stumped as he was when he started.

About five years prior, it had been discovered that I had a slight pouch in the wall of my colon on the right hand or ascending side. This pouch, or diverticula as they are called (when infected they form the basis for the disease diverticulitis which can lead to sever bleeding in the bowl and if left untreated is potentially fatal) are most often found in Westerners on the left hand, or descending side, of the bowl and are usually caused by a low fibre diet resulting in stool that literally pock marks the bowl because of its hardness.

Due to the nature of my pain, representing in the lower right abdominal cavity, and the fact that the diverticula was in an almost identical position in my colon, my surgeon said, if I wanted, he could remove that part of my colon and see if that helped. He said the chances of it being able to resolve my problems were low, but if I wanted him to he would perform the surgery.

I was willing to clutch at any straw offered by that time, so I of course said yes. It took about two months for my body to settle down after the surgery, and the post surgical infection that hospitalized me for another three weeks, before we could conclude that the pain had not been diminished.

It was at that point that the surgeon referred me to one of our hospital's chronic pain clinics in the hopes that they would be able to offer me relief. He had one specific doctor in mind for me to work with, someone who he knew who had had a successful track record in clearing up mysterious abdominal pain problems in the past.

My surgeon must have pulled some strings because he was able to push me to the front of the line, and I didn't have to go through the usual 16-month wait to get in to see the doctor. The only doctors who even deal with the issue of chronic pain are anaesthetists, and they are in such demand elsewhere in hospitals that their clinics are few and far between. The doctor I see can only see patients once every two weeks, and even those clinics are subject to cancellation if he is needed for emergency surgery.

The doctor I'm seeing now was able to diagnose my problem as soon as he heard my symptoms and by asking me if I had ever been diagnosed with any prostrate problems. When I told him that I was once diagnosed with an infected prostate that was all he needed to hear.

But diagnosing and treating, as far too many people I'm sure can attest to, are two entirely different matters. In my case in particular it was a real problem. It is very difficult to access the pelvic wall of a man; anatomy has provided a very specific obstacle that doctors have to work around.

Myofacial pain is caused by bunching of the myofacial sheath around specific muscles that cuts off the flow of blood to the affected area causing it to go into spasm, and all the muscles in the vicinity to react in kind. The longer the condition lasts the worse it gets and the more parts of the body that are affected.

In order to treat this the doctor needs to be able to inject the focal point of the pain with a mixture of steroids and anaesthetic which will smooth out the bunched myofacial and allow the blood flow to resume and the muscle to return to normality. So when dealing with a man's pelvic floor, anatomy becomes a problem.

We've tried ultra sound to help guide the needles, we've experimented with different angles of approach (it's a good thing I'm flexible) and after three years of chipping away, we're still not much further ahead than we were when we started. I'll perhaps get some temporary relief from some of the peripherally damaged muscle pain, but we don't seem to be able to hit the bulls-eye.

The other issue in play here, in terms of the injections, is the fact that there are some significant arteries that flow through this area of the body as well. I don't know if any of you have ever experienced being put under an anaesthetic before, but whenever I've been put under I get a particular taste in my mouth just before I succumb to the affects of the drug.

On more then one occasion I have experienced the beginnings of that taste starting to form in my mouth after a treatment. This occurred because too much of the solution was getting into my blood stream because of the muscle's close proximity to veins, and the doctor has been forced to back off from trying to treat what we think may be the focal point of the pain.

It's been a long and sometimes frustrating process that has been complicated by hesitancy on so many people's part to take pain seriously as an illness. There is no sign of anything physically wrong with me, except if you touch me and I jump through the ceiling. The only clue to the fact that there is anything wrong with me is that I'm forced to walk with a cane as I have a hard time bearing weight on my right hand side.

Thankfully the medical profession seems to be more and more understanding, but I've still run into doctors who unless you're dying of cancer won't take pain seriously enough to prescribe medication strong enough to deal with it. I've been without a family doctor since last fall, because the doctor I had been seeing for 13 years closed her practice, and the people she recommended me too take that attitude.

Of course they don't tell you this in advance, so I showed up for my appointment to renew my medication, and was told by the doctor that he didn't believe in prescribing morphine. I showed him the bottles from the last time the prescriptions had been filled and he didn't care. I ended up in emergency for eight hours that night until they were able to see me. (As an aside the people at emergency are not supposed to fill prescriptions, but from the doctors on down to the nurses in triage they were so appalled that any doctor would have treated someone like that, they didn't hesitate to give me a prescription for enough medication until I could see my pain specialist.)

But there are countless people who, after they've asked what's wrong with you and you tell them chronic pain, you can see it in their eyes that their thinking what kind of wimp are you that you can't take a little pain or that they you're faking it so you can get a free ride on disability insurance. Of course these are people who have never had to take more than an aspirin for a headache, or think because they once had some temporary pain and "toughed" it out that you should be able to just get on with your life.

What bothers me about that attitude is how prevalent it is, not that it is directed at me personally. That attitude exists far beyond just the person on the street, it goes right on up into the attitudes regulating bodies have when it comes to procedures that can be done to treat pain, and what medications are covered by drug plans. It is only recently that the people who are in charge of the disability pensions in my province have considered chronic pain a disability.

In the United States the treatment I receive, trigger point injections, is only offered in private clinics and not even recognized as a treatment by insurers. So even if you have the best health insurance that money can buy, it won't be covered and it's not offered in any hospital.

Then there is the whole issue of medication. I can't believe how many people are still frightened by morphine. The most common reaction I get from people (as they are smoking a cigarette and drinking their 5th beer of the day) is you better be careful that you don't become addicted.

Like any other medication it is possible to abuse morphine, but if you're taking it for pain you will not develop an addiction. It's only people who take it for "recreational" purposes that will become addicted, but why you'd want to I don't have any idea. I have a history of substance abuse, and morphine has never been a problem for me to withdraw from.

A number of years ago I had to take morphine for a couple of months for something else, and when that condition cleared up I simply gradually reduced my dose over a period of a week, and after the two or three days it took my system to clean out I was fine. It's like any medication you take for a long time, cutting it off suddenly would be a shock for your system, but you never experience the emotional cravings that you would for something like nicotine or alcohol.

When you suffer from the illness of chronic pain your life is no longer your own. There is nothing that is not dictated by it, from your ability to sleep to your ability to focus intellectually, you have no control anymore. Each day when you wake up you wonder what the day will entail. Will you be able to go for a walk, will you be able to sit up, or will you spend the day in bed dreading having to walk down the hall to the bathroom because it hurts that much to move.

There are days when you have to make the trade off between functionality and pain. The more you do physically the less effective morphine is as a painkiller. So if you stay inert in bed and let the morphine work you can be certain of experiencing less pain. But you can also be certain of going crazy and sleeping a lot, because like other pain meds morphine works by closing down your system.

Pain is exhausting physically, intellectually, and emotionally. It takes so much out of you to just try and perform minor tasks some days like getting dressed that you can’t be bothered. Your self-esteem plummets when you have to go too many days like that, or without washing, shaving and brushing your teeth. Your body starts to smell because of the horrible sweats you experience from the pain, and there's little or nothing you can do about it.

It can take me as much as four hours to write a simple two page post for my blog because I can't focus on what I'm doing well enough to write a sentence. Even the thought of trying to read an email from somebody or a comment on a post is far too challenging on rough days.

But except for the fact that I will on occasion bear a striking resemblance to a raccoon because of the bags under my eyes, or a certain pallor to my skin, unless you catch me wincing or giving a overt display of being in pain, I look perfectly healthy. No scars, no lumps, no disfigurement; nothing that distinguishes me from the next person.

That's the biggest obstacle that sufferers from chronic pain have to overcome, proving that they are ill. Far too many people, doctors included, act as if because they can't see anything wrong with you, you are fine. For all that there are some people who are doing there best to help people like me; chronic pain remains an illness that doesn't exist in the minds of far too large a segment of society.


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Comments

I just randomly came across your blog from google. I have Reflex sympathetic Dystrophy, a chronic pain condition that affects my left foot. Your blog post describes chronic pain and its stigmas well. I hope that you can find some relief. It would be great if we could get rid of our pains completely, but until then, I just wanted to say thanks for sharing your experiences. Your willingness to talk about it is contributing to the solution.

Nickie,

I'm glad the article was of help to you. Ironically I too used to suffer from reflex sympathetic dystrophy, caused by one too many surgeries to my left knee.

Something that worked for me is getting rid of the pain eventually was accupuncture. The woman who treated me was able to open up a new passage way for the nerves to properly connect and talk to each other.

This enabled me to finally walk without a cane or pain. It that service is abailible to you, you might want to try it out and see if it helps. Initially it will get worse, new nerve endings being opened up etc, but it will get better.

Good luck to you as well

Richard