|The nuns taught us well how to take care of one another: little did I realize as a 13-year old how important those lessons would become once I had my own family.|
Given that I need to see my primary care physician in a few hours, I thought today would be a great time to finally discuss one of my huge problems, pain!
Yes, I, like most who suffer from fibromyalgia, have a TON of pain. It's just all too indescribable because it is so all-encompassing. Over the years I've taught myself to try to ignore it. Of course, how much pain I have is often registered by the blood pressure reading in my GP (or PCP, whichever term you prefer). Normally my BP is very low -90/60 - or thereabouts. But all too often by the time I get to the doctor's office and the nurse takes my BP, I'm suddenly in the 130/95 range, or even higher by quite a bit, all because of the pain factor.
This is where this wonderful thing kicks in, the "pain contract." I love it and have been on one since the late 80's. I've even changed doctors a few times (through no fault of my own, I swear - I see you rolling your eyes at me!) but the pain contract has moved along with me.
Essentially, it's a document intended to reassure a patient and, at the same time, to help the physician maintain vigilance over those patients who need the heavy artillery of pain meds.
How does it work, you ask? Well, the patient and physician decide on how much pain medication a given patient needs in a given month. Sometimes there are adjustments to be made, some fine-tuning, but for the most part it is relatively easy to evaluate and maintain. The pain contract also helps the doctor because there is so much less of a chance of "doctor shopping," and some doctors do require random urine screens to see what is what.
Given that the state of Ohio is suddenly cracking down on "pain management" because of a few horrid doctors who ran, basically, pain clinics/mills with no physical exams, documentation, histories and so forth, it's been a bit rough for the doctors who are legit, have great training and experience, and are too often found having to open their offices for minute inspection and its rigmarole in order to satisfy the authorities. Consequently, it's not much of a surprise that often in doctor's offices you'll see signs all over, saying, "We Are Not Accepting Any New Pain Patients At This Time."
As I stated earlier, let me make it clear that though I've been taking super powerful pain meds, I'm NOT addicted to them, and it is, basically, a huge myth that one does become addicted: Under keen supervision by a physician who understands pain management and who guides the patient, as well as monitors the patient, nothing could be further from the truth. I am still on the dosage I was on back in the '80's. I never feel any high with the meds, an important point, and I take them only when I need them, also an important point. There have been years when I've barely needed the meds and other years when I pill-counted like crazy, rationing out the meds in order to help get me to my last refill dose.
I might add one problem, though I'm not sure how it can be remedied. Just as I need my pain meds the most, I tend to run out. But according to the pain contract (and the law?) I need to actually see my primary care physician in order to get another prescription. This is a sort of madness since by then I'm pretty close to the 9 to 9.5 pain level - on a scale of 1-10 with 10 being the worst pain you've ever experienced. By then I am well into "chasing my pain," and am in no shape to go anywhere other than the "Irene shuffle," going between bed and bath. Lately, even that's been too difficult.
But because this post is a bit long on the "woe is me" side, I'm going to add a few things that I am grateful for:
1. My primary care physician actually "gets" it and though we banter like we've known each other since childhood (we haven't) and agree to disagree on certain things (a veritable minefield) I pray for the man's health each and every day, not just for his sake, but I'll admit it, for mine too!
2. We don't bicker or haggle about how much of my pain pills are enough: he sees me and knows that I need the usual dose, not trying to get me to take any sort of randomly selected minimum. In fact, he's quite vocal about me taking more pain meds, so that I can accomplish more. This is a bone of contention since I think that taking pain meds in order to get things done is a false energy which gets you into trouble in the long run. Taking pain meds in order to get my Be-Hind to a doctor's visit is different from taking it in order go clean up my room.
3. We've come to the age when there are so many ways to go regarding pain management. Whereas in the past things were, let's face it, pretty much hit or miss, today's meds are extremely effective and the way the meds work is better understood.
4. My "first" GP, bless his heart, admitted me to the hospital (back in the late '80's) and was determined that "we" would find a pain med that actually works, since not all pain meds are made equally and different pain meds often take different paths in your system. (YES, THIS IS PRECISELY WHY YOU NEED A PAIN SPECIALIST, especially one who will work with your primary care physician.) All I recall is about 5 minutes of one visit, which is so sad. My then PCP would stop by my room each day, at least once daily, and we'd spend literally hours talking until I'd remind him he had other patients to see and a wife with two toddlers at home. But the work he accomplished in that week with a hospitalization would today take months, if not years, because this sort of thing is now done on an out-patient basis.
During that stay, I was given a button in my hand and every time I needed a hit of med (when the pain level was at least an 8, if I'm not mistaken), my finger would hit that sucker. Though I didn't realize it at the time (how could I when I kept looking at the walls and ceilings and wondering how could I pull off climbing them: desperate times and all!) the reading of how many times I hit that button showed how much the medication we were trying was actually working and when it looked like it was a no-go, we'd move on to the next med.
Morphine, as every other pain med tried, made no difference. But once I was given Demerol, a medication I'd never even heard of at the time, the magic bullet was found.
So, if you're having unbearable pain, pain that just isn't being helped by anything, think about the following. Some may be obvious points here to some, but hopefully something here may help, may resonate:
- a pain contact route IS the way to go;
- ask for a complete work-up with pain management there to help.
- be sure you know who - i.e., which hospital - you're being transferred to in the middle of the night. When I mentioned Demerol for my daughter, hoping for a bit of a pain break or a lessening of pain for my daughter from meds that were clearly not working enough, you would have thought I'd asked the CEO of the Center to run up and down the hallowed halls buck-naked. Yes, they saved my daughter's life, more than once, but the rigidity and constant "staying on top of everything" was a total nightmare, and an unnecessary one at that. I was told more than once that Demerol was NEVER used in the major medical center, EVER, by quite a few doctors and nurses with their noses in the air and a smug attitude. THAT is just insane to limit yourself from meds that have been around forever, thus tried and true, having been tested for decades? Can the same be said of the new meds coming down the pike? What side-effects will be seen decades from now from the use of the newer pain meds? And did I mention that the cost of Demerol is minimal?
I've run up a post again that is entirely too long and should have been cut down into little pieces, but that's not going to happen! ;)
In fact, I can see myself writing quite a few posts on this subject. If you have any questions, please let me know. I do have great sources that don't seem to push me away. Furthermore, having this DD for 38 years has given me a unique perspective.
Hope all are having your best day ever, only better! Thanks for stopping by! Ciao and paka.
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