Help Chronic Pain

Question:

I haven’t had pain at this level. In the 10 years before my hysterectomy in Dec 2000, endo pain kept me limited to very basic housekeeping and errands (I don’t work outside the home and am caregiver to my arthritic husband, who is 79.) My bowel function was involved and that was some of the pain. But not what you are experiencing. My husband’s younger sister was treated at Scripps Institute in San Diego for severely debilitating fibromyalgia, and was able to stop taking painkillers most of the time. I know they used biofeedback, I think also relaxation exercises. She added a sauna to their home. She is still limited – her husband travels a lot and she does not. But she is happier in the last few years. There’s some material here: http://www.painmed.org/netresources/ The kind of pain management I’m thinking of doesn’t necessarily try to test or find the physical source of the pain. This doesn’t mean "it’s all in your head," but rather that pain is such a complex mechanism that it may not be possible to relieve it by surgery or drugs, and in fact touching or probing your body can make matters much worse. Right now your pain is like a very unwelcome full time occupation which has taken over your entire life. Suppose you could find a specialist (and I don’t mean a shrink) who said to you that your goal was to improve each day’s experience, very slowly, not to identify causes or find medical solutions. Drugs are a problem not just because they compromise your perceptions, but also because over time they lose their effectiveness. Your body develops a tolerance level that keeps rising, and each time the drug wears off, there can also be a rebound effect where the pain comes back worse than ever. I can hear how unhappy you are, and I don’t mind listening, and I wish I could help more, Linda

Response:

Sunshyn, this is just my opinion, but I have had a rule about tests for years. I never do them if the side effects are to make matters worse. Doctors will order tests and more tests in order to get the most complete information about your body, but it’s your life, not a research project, and only you can say when enough is enough. I don’t get tests to satisfy my doctors’ "need to know." Have you considered getting a pain specialist as your primary care doctor, and then having him as consultant for *every* other doctors’ tests or orders? In other words, if you don’t want to fight directly with a doctor, see if a doctor whose specialty is pain control might have a whole different perspective on what is and isn’t a necessary test. But in the long run, all the calls are up to you. There are always consequences, but everything in life has consequences.

Consequences? I know plenty about that. I can not even go out to see a movie without as many consequences as this last trip caused. That’s why I no longer leave my house except for medical reasons. The problem with the consequences of my leaving the house is that they FAR outweigh every possible good point. 6 and a half years of tests and procedures have failed to come up with ANY good side effects, with the slight exception of my current PT negating 6 years of muscle stiffness due to my being crippled all this time. These procedures have, however, provided tortuous consequences which have further caused my life to become the cruel parody of those who can at least claim a terminal reason. My doctor is a pelvic pain specialist. The MRI was my PT’s idea because she’s hit a block in all her attempts to do something about the pain itself and thought an MRI had a chance of showing something they were missing. My doctor cleared the first one for me because I asked, then talked me into going through the second because "if we’re going to do it, we should do it right". I’d say that he had no idea of the radiologist’s motives. I know him well enough to seriously doubt he was lying about the second test enabling more visibility of the concerned radiologist I spoke with (a different one than he’d talked to) was certain that PCS is the exclusive possible reason for that specific test, with none of the other benefits. I’m uncertain whether my doctor is even aware that the ordered test was for more then regular dye contrast. It sounded like that’s what he expected me to get, and I believe that’s what my appointment was made for, but they refused to do it because my charts stated this MRA angeogram<? thing (someone please help with the spelling please, I can’t even make headway researching what that procedure is). Gods, I’m really confused, as well as miserable. What exactly IS pain control? band aids like drugs? I seriously need to know. I care little about meaningless, temporary band aids for the pain since such things give me no part of my ruined life back. Can anyone here understand what I mean when I ask what good that is? The stupid muscle STILL doesn’t work when it’s been overworked (by which I mean doing something as minimal as standing for 5 minutes the day or two beforehand)- regardless of whether I take enough pain meds to mask every bit of the pain itself. Of course that many meds make any other type of functioning virtually impossible as well. I really hate having my lucidity affected as well as my mobility. It leave me without even the ability to focus on something else. — -Sunshyn   "I’m not shy. I’m studying my prey." Chainmail & More   http://www.sblades.com/

Response:

Sunshyn, this is just my opinion, but I have had a rule about tests for years. I never do them if the side effects are to make matters worse. Doctors will order tests and more tests in order to get the most complete information about your body, but it’s your life, not a research project, and only you can say when enough is enough. I don’t get tests to satisfy my doctors’ "need to know." Have you considered getting a pain specialist as your primary care doctor, and then having him as consultant for *every* other doctors’ tests or orders? In other words, if you don’t want to fight directly with a doctor, see if a doctor whose specialty is pain control might have a whole different perspective on what is and isn’t a necessary test. But in the long run, all the calls are up to you. There are always consequences, but everything in life has consequences. Best wishes, Linda

Response:

MRIs suck. I was finally feeling up to the trip and exertion to attempt the MRI with contrast which my doctor felt was important to do. He’d had me overwork the day before the last one, to better show any inflammation. I spent a month paying for it with daily pain. The first week after, I’d been hurting so much that I as losing chunks of memory, and it took the 3 weeks before I could even walk to the bathroom with something other than a painful, and exhausted, hobble. I hadn’t wanted to go to a second MRI because the radiologist made it sound like it was just to check for PCS. However, my doctor explained that the first one didn’t show the right areas well enough, and one done with contrast dye would be needed to check for PCS as well as for better clarity of the muscle and surrounding tissue. I made the painful, hour long trip to the hospital (car vibrations send my muscles into spasm). Got in for the MRI fairly quickly and was put into the tube for some "preliminary scans". They’d propped my legs less this time, because it might help get clearer pictures, so, between that and the otherwise high levels of pain, the half hour I spent for those scans hurt quite a lot. They informed me, over the earphones, that they were taking me out to inject the dye. It took a long time for them to let me out, and I was growing concerned by the time they finally did. That’s when they informed me that they had JUST read my file and were not ABLE to do the tests I made the appointment for!!! They said to go home and make another appointment, that they weren’t going to charge me for the utterly worthless scans they’d just made me hurt so much for. I actually broke down into tears from the pain and uselessness of it all. I’ll be paying with 2 weeks of excessive pain and muscle fatigue for this second useless trip. For a little while, they even tried to blame it on my DH because he asked for the latest possible appointment that we could have the needed tests done during. A radiologist showed up and explained that I was supposed to be getting an MRA (ageogram<?) (one tech even used the term veinogram), which was just to look for PCS! What the hell! My doctor doesn’t even know what’s going on?! Well f*ck that! I’m not doing it. I don’t give a damn if I have PCS. It’s not the cause of this crippling pain- which happens to be my current concern. I’m so worn out from being put through all these years of pointless procedures and tests. I’d have been so much better off if I just crawled into my hole and stayed there. — -Sunshyn   "I’m not shy. I’m studying my prey." Chainmail & More   http://www.sblades.com/

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