About Me

My photo
I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Tuesday, July 31, 2012

The Pain Contract

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.

(Did you enjoy this post?  Please subscribe to my blog and you'll never miss anything.  It's easy: see the directions on the right hand corner of this page.  And BTW: I'll never sell, share or rent your contact information.  I don't even know where to find it, so it's a firm promise!) 


  1. Hi Irene, thank you for posting the link to this blog in Adrienne's comments.
    I live in Australia and I have never heard of a pain contract before, but i like the idea of it.
    I was interested to hear about your hospital stay to find the best pain treatment for you, I often have fantasies of being put into hospital and knocked out for a week when my pain levels are at the 9.5 level all day :)

    1. Hi Melinda! Welcome! And I have been to your beautiful country!

      Yes, that was still possible to do back then, though the insurance companies weren't happy. But I'd had so many hospitalizations by then that I think they realized that it would be cost-effective to just go on and do it. On the other hand, this was also a time when new mothers had 5-day hospitals stays for normal deliveries. How times have changed. Though a hospital's no fun, at least we were able find what helped relatively quickly!

      Hope to see you here again, soon and often! Thanks so much for stopping by, reading and writing a comment. xx

  2. Hi Irene

    Great blog as always. Boys can only tolerate paracetamol chemical sensitive especially eldest son he had to try Amytriyptylene made him so bad with in first couple of days had to stop his symptoms were so much more severe and he had new ones that stopped when he stopped taking. This was to try to help with his sleep and pain. Had to continue for a couple of weeks but symptoms were so bad then was allowed to stop. Only thing they want to offer the boys is GET that exacerbated their symptoms so this was stopped also. Had a traumatic time in 2011 with regards to what families are put through if it is felt that your child should be better if you know what I mean. Have lost all faith in the NHS education was another nightmare luckily had our MP involved who helped us as a family through our awful time. We have been told that it is unusual for ME to carry on for 3 years and our kids not to get better, we know that this is not the case how ignorant are these so called professionals.

    That's all ME patients are offered is CBT/GET if it does not work first time leave for a year then try again and again. Boys have been left to pace as they always have done which is so much better for them. My mum has Rhumatoid Arthritis that she has had since my sis and I were kids, seeing how the boys are is like watching my mum. My mum understands how the boys feel as she suffers with debilitating pain and fatigue. Hard times the boys just get on with it as best they can and we are so proud of them. Sophie xxx

    1. Hi Sophie! Thanks for the kind words.
      Yes, I really wish they'd stop being so rigid in their thinking and stop trying to clump everyone together for same (just about) non-treatment. Ridiculous and criminal what's going on. When I read about your boys I just want to scream! How dare they make such patently wrong statements? Medical politics and regular politics. But you really lucked out w/ that MP. On the other hand, why should you have to go thru this nightmare for your wonderful sons, for something that they should already be getting!
      I understand why you're so proud of your boys. What a hardship they are living, to put it mildly. I feel sure they'll grow to be very kind, understanding and compassionate young men. I just wish the price wasn't so high! xx

    2. Aw thank you they both already are understanding and compassionate so are their sisters. We are a close and loving family including my parents and this helps us get through. In laws are good but just don't quite get ME if you know what I mean.

      Price always seems to be high for kids/parents and loved ones because of the stigma Yuppie Flu!

      Take care Soph xx

  3. Hi Sohpie! So happy to hear you're a close family. That's such a big help. And I certainly know "what you mean." For some of my family, I'm so glad we get to choose our friends. Oh, how I hated that when everyone was referring to it as the "yuppie flu." At least that name's been forgotten for the most part. xx

  4. In Canada, there is a kind of "pain contract" that seems manditory, and the contract is with the government lol. I filled out a monthly form with my previous doctor (of 7 yrs) and she submitted it to whomever needed it, I assumed the gov't. Whether this is a new or long standing situation in Ontario, I do not know. I didn't grow up here, a lot of things are different than my home Province of B.C.

    So I guess in Canada, this pain contract concept may be part of the new methods they are using to enforce stricter narcotic prescription drug use. I don't know for sure. What I do know is that just like the US and the UK, chronic pain Canadian patients are also having problems with doctors over being given access to the pain relief medication we deserve.

    I recently discovered a National company that assists doctors and patients with chronic pain management. So now I can tell whatever doctor I end up with that he can defer all prescriptions and pain management care to them. That way I get the family practitioner I need, and the pain management team I need. Hopefully it will help me in the long run. I'm hopeful anyway...

    I also wanted to add that one should befriend their Pharmacist. It is the Pharmacist who knows more about the medications your doc prescribes than anyone else, it's their job. They tend to be most familiar with what is being prescribed for which ailment/symptom, for obvious reasons. As well, they are going to be up to date with the most current information.

    In fact, it was my Pharmacist who recommended Nucynta to begin with. I mentioned it to my doctor, she called him up on the phone (right then and there) and they discussed the drug and what dose we should start on. I got the prescription same day.

    So talk to your Pharmacist about what your doctor is prescribing. They don't just give you those informational hand outs for fun, they really know their stuff.

    1. Interesting about the pain contract, Shannon.

      I've delayed in answering because I need to be very diplomatic here and I'm pretty sure I won't able to pull it off. Pain management is so near and dear to my heart, not because of me, but much more unforgivably, they messed with my daughter,who had a VERY visible illness, putting her through a beyond-words tortuous nightmare for almost two years.

      I happen to be of the school which thinks that pharmacists are NOT doctors. No matter how "good" they are, they simply do not have the whole picture. Furthermore, they have not examined you, nor taken your history. Pharmacists, in my opinion, step over the line too often, scaring their customers. They give out medical advise they have no business venturing into. I happen to resent it when a pharmacist questions my doctor's orders, casts doubt about my doctor or says my doctor is doing the wrong thing!

      I realize I run the risk of alienating you by writing this and I realize that you may resent me for saying this, especially because we all want to think our doctor is the best, and especially since we rely on them so heavily. However, I can't in good conscience go without wondering about this point: is there something wrong with the picture of the doctor who needs to consult w/ a pharmacist? I would say that any doctor who needs to consult with a pharmacist is not very well trained/experienced in pain management or whatever the chosen field.

      This is a very big issue. It's the pharmacy organizations and lobbyists in the State of Ohio, for example, who have made laws pass that are making it increasingly impossible for legitimate, experienced pain management doctors to practice the way they see fit. Because of the pharmacist "lobby," many pain specialists don't want to go through the hassle of dealing with pain patients. We already had problems finding doctors who dared to prescribe certain meds for us. Do we really need more problems in this area? From bloggers/twitter I've recognized our "major medical center," supposedly #2 in the US, where bloggers have frankly written about how they were refused pain meds in the center's ER's for certain illnesses. I happen to know first hand that they are correct, if in fact not understating the picture.

      I like my pharmacist. He's a nice guy. He can give me guidance on some things, but when it comes to doctoring, he isn’t it. I'm sorry, but I have say it the way I see it and from what I hear from many who are in the same pain boat as myself.

      Friends? xx