Intractable Pain

Pain doc tomorrow. I'm terrified, afraid that I'll be turned away and rejected despite my totally legitimate need for strong pain medication. I'm always super nervous when it comes to doctor's appts and filling pain pill scripts, afraid that they'll take away my life-line.

I need strong pain medication to survive. The pain is so strong that it could literally kill me with the stress that it puts on my body.

The Intractable Pain Survival Manual is a fantastic resource, one that showed me that I'm not crazy for feeling like the pain was literally killing me. It allowed me to take myself and my symptoms seriously. I've been discounted and waved off so many times that I wasn't sure that what I'm dealing with was "bad" after all. Isn't that just sick? The medical community, who are supposed to be there to help, was the cause of a ton of self doubt and downplaying of the severity of my symptoms. And because of all of those experiences, I have a deep distrust of doctors and pharmacies, even as I rely on them for my basic survival. (I would say, "rely on them for my recovery", but that's not happening yet. I'm still trying to nail them down to get help to just stabilize my conditions, much less work toward any improvements!)

The IP Manual says this in regards to severe, uncontrolled pain: (I cherry picked from several of the sections within the manual)

"The biggest problem an intractable pain (IP) patient faces for survival is that a bona fide IP patient is a rarity among chronic pain patients. Chronic pain, by standard medical definition, is a pain that is present over 90 days, and which can be continuous or intermittent. Millions of people have chronic pain. Common arthritis, TMJ, carpal tunnel, bunions, and headaches all qualify. However, true IP, as defined here, is constant, severe, disabling pain, which causes changes in pulse rate, blood pressure, and adrenal hor- mone production. This form of pain is relatively rare. Control of IP requires the daily use of prescription medication. I estimate that one IP case occurs among about every thousand chronic pain patients.

Due to IP's rarity, almost every doctor, insurance plan, hospital, or family member you encounter will initially assume you are just another, average, chronic pain patient who can get by with the standard first- line treatments such as exercise, positive mental attitude, acupuncture, massage, and non-prescription drugs. To survive, you will constantly have to fight this misconception, and you must educate most of the people you encounter. 

It sounds so obvious and simple, but the hardest thing an IP patient to do is, down deep in your mind, heart and soul, stop denying that you have a serious, life-shortening, medical condition that will not go away. You have undoubtedly heard, for example, that alcoholics and addicts are often "in denial" that they have a problem. No question about this. It is human nature to deny that one has a serious, incurable dis- ease. There is also no question that an IP patient may have may have a greater degree of denial than the alcoholic or addict, because so many people ignorantly tell you "your pain is all in your mind." You must accept your plight, because denial will keep you from embarking upon a path that will effectively control your pain, give your life meaning, and extend your life. Every single day you delay effective pain control will cause your body to literally age and your organs rust away. Too long of a delay may leave you in a permanent demented, vegetative state. Bottom line. For whatever reason and whatever the cause, you have IP.

Your IP pain is long-standing, constant, keeps you from sleeping, drives up your pulse rate and blood pressure, and alters your adrenal hormone levels. You must remember that your pain is your enemy. To cause it to worsen or flare for any reason may do further damage to nerves and other body tissues that are already permanently damaged.

IP patients must continually remind themselves that they are rare patients. The vast majority of chronic pain patients have pain that responds to rather simple, common forms of pain relief such as massage, chiropractic, and non-opioid drugs. IP pain is different. Only potent pain relief measures are effective.

IP has numerous, severe complications which will shorten your life and incapacitate you unless you take the bold measures required to control IP. Totally untreated IP will cause death within days to weeks once it starts. This occurrence, for example, has been observed following injuries to soldiers who could not obtain morphine or other potent pain relievers. 

3 thoughts:

  • Catherine | September 4, 2014 at 3:38 PM

    I am so glad you posted these bits from the book. Helps me understand better. I can't imagine how hard it is and I can totally see why you are afraid of doctors and pharmacies. I am and my chronic pain isn't super hard to manage, and I still have issues at pharmacies just with common pain medications (non-opiod). I also went to 9 doctors before I was diagnosed with fibromyalgia and that is a pretty common condition.

    So, I think you are awesome. Tomorrow you are going to go to the doctor and kick ass. Be honest, be strong, and make sure you get the care you deserve.

    I hate that you have to do that. That you have to be strong at the doctors office, and make sure you get the right care. That isn't how it should be, it should be that doctors are bending over backwards to help people. That seems to be a rare find. I so hope that is what you find tomorrow.

    Sending a lot of love, C

  • Beate | September 7, 2014 at 11:55 AM

    Oh boy, I just caught up with your posts and reading how you feel makes me wish so hard I could do something, anything to help you ease that pain :( You deserve so much better than this. And your husband truly is an amazing man being by your side through all of this. I know what it feels like to lose all trust in doctors. I'm keeping my fingers crossed your upcoming visits will help. I came across something several times lately and it made me think of you cause doctors and patients said it helped: Did you ever try eating completely gluten free and low carb? I hope you don't mind that I ask, I just really wish there was something to not only numb the pain but make it go away! If you want to know more about that topic, just let me know. I'm sending a big hug your way and I'm thinking of you!

  • Cassandra | September 11, 2014 at 8:08 PM

    Thank you, ladies. I appreciate you both so much!! I haven't updated officially yet, but the doctor's appointment went well, quite well, and I have the medication that I need now. Well, we're trying out a combination, and it seems to be working decently :)

    Beate, low carb I have not tried, simply because I have other digestive issues and I don't do protein very well. "Too much" (which varies from day to day) makes me very, very sick, so I tend to stick to more easily digested foods like fruits and vegetables and grains and some light proteins. As far as GF, though, I've heard that a LOT, and some people I know have really seen some improvement with a strictly gluten free diet! I actually quit being GF a year or two into being sick, have been gluten free and either vegan or vegetarian for about 6 years by that point, and my guts are actually doing much better these days than they have for the past many years. I'm quite happy! Thank you for the suggestion. I appreciate knowing that you're thinking of me :)

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