Comments on: Pain doesn’t kill. Or does it? http://workingwithchronicillness.com/2007/06/pain-doesnt-kill-or-does-it/ Mon, 07 May 2012 12:58:41 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: Diana http://workingwithchronicillness.com/2007/06/pain-doesnt-kill-or-does-it/comment-page-1/#comment-1021 Diana Tue, 19 Jun 2007 17:03:27 +0000 http://keepworkinggirlfriend.com/2007/06/18/pain-doesnt-kill-or-does-it/#comment-1021 I have had experiences related to pain medications with two pain clinics, a psychiatrist, my GI doctor and even a pain doctor from a small clinic in Hawaii on vacation (the buzz was that "everyone" in that small town was hooked on painkillers): Everyone single one of them was happy to give me as much as I wanted. All of these experiences frightened me, and each doctor has his/her own preferences. I still have bottles (and more refills) of vicodin. Now I am trying Dilaudid. Methadone and oxycodone were the worst in terms of side effects. The doctors in my GI clinic voted for giving me a major surgery to deal with my pain, even though the source is unknown! I did my best to follow the programs recommended. I spent 1-1/2 years experiencing everything from panic and deep self-doubt to severe constipation to shopaholic behavior (and I hate shopping!) to constant hallucinations while awake to spotaneous sleeping (this is how I spilled tea on my laptop) to confusion. Yes, the meds help me function and get to work. And I appreciate that it takes time to find a "solution", which has to include things other than meds (and this takes a great deal of effort to achieve as well, especially when one's mind isn't right). Where am I, what am I doing, who am I? I am moving through my work days as a zombie going through the motions because I know the drill. I have lost all sense of time. I have 8-9 pain when I am at work regularly, even with the meds. I try my best to keep the activity level down because when I am home on the weekends and sitting still, my pain drops blessedly down to 4-6, punctuated by attacks, but they are easy to handle when I am at home. Should I be working? That is a question I can only come up with a "yes" answer for. I've only been at this for 3 years, maybe with time it will get easier, but maybe it will wear me down. I don't know. I hold onto hope that something new will work for me. I know my experience is not unique. My husband reads the forums (I can't do it because it makes me cry to read about what people are going through). There are many people who can't get any medication from their doctors; they are told they are "addicts", that their pain "isn't that bad." One poor soul searched through all her clothes, her pocketbooks, her luggage, to find one pill to get her through the day. What is my point? That things are somewhat out of control in this relatively new field of pain management, and we have to be patient and stay the course. The actions of doctors vary dramatically. As Rosalind has pointed out, we need to educate ourselves and ask questions. I have been searching for a doctor who has a philosophy similar to mine: No more meds, no surgery, keep the job. I found him in Pittsburgh (I live in NY) and I will try an intrathecal pump, which injects the medicine into my spine, so I only need 1/300 of what I am taking orally. And there are other new technologies as well. See, e.g., http://www.medtronic.com/. If you are someone suffering with pain or the effects of pain meds, don't accept your situation. It doesn't necessarily have to be this way. People will argue that it can be expensive to go after so many alternative courses. Yes, it is. But I am willing to take on major debt so that I may be reasonably pain free while I am working and living (the level 5 that most doctors aim for), so that I may one day be myself. Yes, I am willing to pay a great deal to "be myself" again. It is worth more than getting a car, a house, etc. I am almost completely exhausted. I don't have much fight left in me. Yes, I think pain can kill. I have had experiences related to pain medications with two pain clinics, a psychiatrist, my GI doctor and even a pain doctor from a small clinic in Hawaii on vacation (the buzz was that “everyone” in that small town was hooked on painkillers): Everyone single one of them was happy to give me as much as I wanted. All of these experiences frightened me, and each doctor has his/her own preferences. I still have bottles (and more refills) of vicodin. Now I am trying Dilaudid. Methadone and oxycodone were the worst in terms of side effects. The doctors in my GI clinic voted for giving me a major surgery to deal with my pain, even though the source is unknown!

I did my best to follow the programs recommended. I spent 1-1/2 years experiencing everything from panic and deep self-doubt to severe constipation to shopaholic behavior (and I hate shopping!) to constant hallucinations while awake to spotaneous sleeping (this is how I spilled tea on my laptop) to confusion. Yes, the meds help me function and get to work. And I appreciate that it takes time to find a “solution”, which has to include things other than meds (and this takes a great deal of effort to achieve as well, especially when one’s mind isn’t right). Where am I, what am I doing, who am I? I am moving through my work days as a zombie going through the motions because I know the drill. I have lost all sense of time.

I have 8-9 pain when I am at work regularly, even with the meds. I try my best to keep the activity level down because when I am home on the weekends and sitting still, my pain drops blessedly down to 4-6, punctuated by attacks, but they are easy to handle when I am at home.

Should I be working? That is a question I can only come up with a “yes” answer for. I’ve only been at this for 3 years, maybe with time it will get easier, but maybe it will wear me down. I don’t know. I hold onto hope that something new will work for me.

I know my experience is not unique. My husband reads the forums (I can’t do it because it makes me cry to read about what people are going through). There are many people who can’t get any medication from their doctors; they are told they are “addicts”, that their pain “isn’t that bad.” One poor soul searched through all her clothes, her pocketbooks, her luggage, to find one pill to get her through the day.

What is my point? That things are somewhat out of control in this relatively new field of pain management, and we have to be patient and stay the course. The actions of doctors vary dramatically. As Rosalind has pointed out, we need to educate ourselves and ask questions. I have been searching for a doctor who has a philosophy similar to mine: No more meds, no surgery, keep the job. I found him in Pittsburgh (I live in NY) and I will try an intrathecal pump, which injects the medicine into my spine, so I only need 1/300 of what I am taking orally. And there are other new technologies as well. See, e.g., http://www.medtronic.com/.

If you are someone suffering with pain or the effects of pain meds, don’t accept your situation. It doesn’t necessarily have to be this way. People will argue that it can be expensive to go after so many alternative courses. Yes, it is. But I am willing to take on major debt so that I may be reasonably pain free while I am working and living (the level 5 that most doctors aim for), so that I may one day be myself. Yes, I am willing to pay a great deal to “be myself” again. It is worth more than getting a car, a house, etc. I am almost completely exhausted. I don’t have much fight left in me. Yes, I think pain can kill.

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