The Harm of Inaction

You don't LOOK sick!

You don’t LOOK sick!

Living with chronic pain is hard enough when people believe you.

When it comes to Ehlers Danlos Syndrome, the condition being mostly invisible, I’ve experienced much more skepticism than belief in dealing with the medical community. It seems like very few doctors are ever willing to admit that it’s possible that they don’t know the right answer, or that someone so young could be in that much pain so frequently. When my intracranial pressure was high, and measured at three times normal, I got more pain medicine than you can shake a stick at. It flowed like water from the pens of the doctors – all because the problem could be observed and measured by shoving a needle in my spine.

The issue is further compounded because my mother died of a drug overdose. I want to be honest about this with all of my doctors, but its already such a struggle to get any pain management that I often won’t tell them because I’m afraid of the knee jerk reaction that always follows. In the state of Kentucky, the reaction is even worse. The good ole’ Bluegrass State has one of the most horrible pieces of legislature in place that I’ve ever encountered as a patient. It’s called the Pill Mill Bill, and I really think that it’s going to kill some people. The victims will be people who just can’t manage to obtain pain medicine, but also can’t manage to live with the pain either.

I read a story today about a male model named Dorian who had complications after a routine oral procedure. He wanted to fix some slight imperfection, a bad tooth or something. He got more than he bargained for when the procedure caused a dislocation of his jaw. Dorian didn’t know he had EDS when he signed up for surgery and had been mostly asymptomatic prior to having dental work. What followed for him was a quick spiral into the land of EDS pain as his body started falling apart. He managed to get a diagnosis of EDS, which is more than a lot of people ever get, but it wasn’t enough. He hung himself out of desperation to escape a pain that was inescapable.

I know that doctors are sworn to do no harm, and I believe that most of them are actually trying to do no harm when they tell you that you couldn’t possibly be in enough pain to warrant a long acting pain medication. Morphine at 40, surely you’re joking?  There is a lot of harm being done by not prescribing, doctors giving in to fear that you’ll be addicted or that they’ll lose their license. Where is the fear for people who can no longer stand the pain and will want to give up and die? Dying is dead no matter how you get there, and even in addiction there is still hope for life.

Addiction and dependency are not the same thing.  The American Society of Addiction Medicine defines addiction as “Addiction is characterized by inability to consistently abstain, impairment in behavioral control, craving, diminished recognition of significant problems with one’s behaviors and interpersonal relationships, and a dysfunctional emotional response.”  Many drugs cause side effects, such as somnolence, confusion and problems with coordination.  These are not behaviors, they are side effects.

There have been points in my life prior to this diagnosis when I didn’t know if I could go on living with the pain. I doubted my own mind, my own experience of the pain and sometimes even managed to convince myself that it wasn’t that bad. It was that bad, it has been THAT bad since I was only 13 and it’s getting worse every day. I may be at a crossroads where I have to choose dependency on medication or dependency on pain. It seems like an impossible choice to make.

4 thoughts on “The Harm of Inaction

  1. Oy vey. Really sorry about your mother. I presume that wasn’t a surprise, but your mother nonetheless. Have experienced that twice in my family (one was via marriage). You know, I never bring up my mother’s line (also the EDS line) as far as any addiction. I think it would put a label on me, who didn’t get that gene or whatever (I just deal with my crap!).

    For the rest–those laws are in my home state of WA I heard (yet 1 gram of weed is now legal?). Glad you brought this up. Where I live now, there are very shady docs and HUGE Rx drug addicts and even though I don’t take narcotics (don’t work/make me sick) there has to be some happy medium. I have 2 meds that are controlled (level 4–so not a HUGE issue you’d think). I’ve had docs here tell me straight out they won’t prescribe them due to their street value. Then, the good docs say my particular meds are not the ones they’re concerned with in terms of street value. Maybe they can all check with the corner pusher?

    This is where the equation is off, which is your whole point, of course. What the states need to do is weed out the docs who carelessly prescribe oxys and Xanax like candy, etc. That’s why they have a DEA # and the pharmacies (at least here) track patients w/valid scripts. This is really a huge issue for some of us and with my new PM&R (the docs leave here as fast as they come), I called in advance to see if my 2 meds would be an issue. He runs a tight ship and no problems. However, this is not the norm. Really glad you posted on this issue as it goes beyond the schedule 1 drugs. It’s also a huge issue if you cross state lines, as I have to go to CA occasionally (like for my surgery) and they need doc’s verification–even on sched. 4– before they’ll fill in the 3-day window the ins. companies give you. Really has to be a better way for those of us who are barely getting by with the meds we have.

    OK, blew up your blog tonight! Love when I find goodies on WP, but working on shorter comments (still)…

    • You didn’t blow up anything… you’re just singing the same song. I don’t know how to make a short comment to save my life, thus I blog – where people expect that I will be a bit wordy! If you’ll forgive me for taking ages to reply at all, then I certainly forgive you for ‘blowing up my blog’. ❤

      You are correct that my Mother's overdose death was no surprise. When I got the call, I needed only to drive about one mile to get there. I began speeding, like a bat out of hell, but by the time I turned the second corner, I looked at my husband and said 'she's already dead, I'm not going to endanger OUR lives to get there faster'. So, I slowed the car down, and things were exactly as I predicted. According to what information I was able to glean from relatives and/or people present, it seems that she was in distress for possibly more than an hour before help was called to the rural Kentucky trailer she died in. The addicts placed priority on cleaning up their mess and ensuring no one got 'in trouble' over trying to save her life. That said, her life as she was living it was not much worth saving.

      I live in California now, because it is the only place I could find any peace. I have a proper PM doc FINALLY, who seems to be willing to work with me. I was honest with him about my family history. It isn't even my Mom's side with the EDS, so there's no rationalization for her drug use. I hope that being honest doesn't bite me in the butt, but so far it hasn't. My doctor has continued me on the medications that my PCP used to stabilize my pain, and has only added gabapentin to the list so far. I think that's a drug I should be trying, so I'm giving it a fair shake.

      I am enrolled in an investigational study, where they actually gave me genetic tests to evaluate my predisposition to addiction. I'm sure this would sound interesting to you to, given your family history. The score ranges from 1 to 30 in terms of risk, and I scored a 21. They are claiming ~74% accuracy, so it makes sense that the score can be off by up to 25% (plus or minus ~7 points).

      So, if anything over 20 is high risk and I'm a 21, then one could argue that I'm only moderate risk by subtracting a few points (and conversely that I'm almost maximum risk by adding them). So, basically it's a non-answer, but it made me happy to know that I didn't blow up the test with a maximum score because I am my mother's daughter. This question has burned in my mind forever, and while this answer isn't definitive, it made me FEEL good to know that I wasn't completely broken according to their fancy new genetic profiling.

      It all sounds very unscientific, but when I understood that the current method of evaluating addiction potential is only considered 50% effective, I was surprised. The ORT (Opiate Risk Tool) Questionnaire is even worse. If I don't lie on that, I'm in the highest possible risk category. My doctor did not change my medication based on the results of the genetic testing or my ORT score. I signed up for the second round a few weeks ago. We'll see what comes when I visit him next.

      I don't know if I'm not supposed to talk about the study, but I honestly don't care. I want those who are not aware of it to know that it is happening, and it may become the gold standard in the near future. I have mixed feelings about even participating in the study, as I worry it will be used to refuse medication to people who need it. But, since I am one of the extremely high risk ORT patients, I believe that my data, and my success in not abusing my medications should help rather than harm. I have been stable on these medications without abusing them for almost a year now. I think with intractable chronic pain, at some point, addiction risk needs to be MANAGED, rather than used as an excuse to not treat a patient. I sure hope I'm not 'breaking' anything by participating.

      To learn more about it, visit:

      As to the legality of pharmaceuticals versus cannabis, my honest suggestion to you is that you open your mind to the idea that cannabis may be the only medication you can count on. It is the ONLY medication I know of, where you can actually have control over access, something which cannot be taken away because a doctor suddenly decides you're a 'risk'. Of course to have this control, you would need to live in a state where medical use is sanctioned, or you must go rogue and grow your own.

      There are numerous forms of cannabis medicine that only contain trace amounts of the psychoactive substance (THC) and extremely high amounts of the healing/therapeutic substance (CBD). While THC is good for pain control and aids with sleep, a patient who does not enjoy that feeling could use cannabis medicine without ever using THC to any great extent.'s_Web_(cannabis)

      GW Pharma has already pulled PATENTS on cannabis medication in the United States. I don't know how I feel about that either. I want pharma to get involved so that patients can get consistent measurement of the doses they use. I want people to have access to high CBD cannabis medications which don't impair their cognitive function, and I think that 'big pharma' will be the first to provide it. Of course, like anything else that literally changes lives, I'm sure the patent means that I will likely be unable to afford it. That's a shame.

      I hope that we are entering a new era of care. I can see that public opinion regarding cannabis use is changing, and I think we have Charlotte Figi, and her brave parents and doctors to thank in part for that. She has Dravet's Syndrome, which is an horrible seizure disorder. They gave her every pharmaceutical under the sun, some of which literally killed her. Her parents had to restart her heart at some point via CPR. Oprah's doctor, Dr. Sanjay Gupta, has changed his mind and apologized publicly for decrying cannabis as a medication. He brought this story to the world and things are starting to change.

      TRIGGER WARNING – THIS VIDEO MAY BE DISTURBING TO SOME VIEWERS. IT SHOWS A CHILD HAVING SEIZURES. But, it also shows the beautiful result that the family obtained with cannabis medication.

      • I’ve stopped blogging and then your reply popped up in my inbox and I had no idea what/who it was! Good thing my memory is still intact after popping over here. Thanks for the info and I am familiar with most of it, actually. Per the test, I hope that will help you out–perhaps even by just knowing. I get so sick from opiates I refuse them after surgery, so I know I don’t have addiction issues with them and can’t figure out for the life of me how I had opiate addicts in the family. They do nothing for my pain, either. Per my schedule 4 meds, I was on Ambien CR (same dose for a decade or so) and I’m still on clonazepam and have never needed to dose up more. I’m tolerant to it and it does what it can. I actually didn’t need the Ambien after I got a concussion this winter (weird). Well, my father is intolerant to about everything like me, and I really do take after him in so many ways (but no EDS, which is what’s odd). Neither of us can drink more than a glass of something and due to my med, I don’t dare.

        I actually wouldn’t be interested in marijuana even if it were legal. I have no issues with those who do need it, however. I’ve never used it due to the family history (all drugs scared the hell out of me), but I was around it in high school and whatnot and know that it dries you out. I either have Sjogren’s (didn’t have the lip biopsy, but was suspected) or sicca syndrome due to autonomic nervous system dysfunction and I can’t tolerate anything drying me out further, which is a major issue with meds in general, even OTC. I literally don’t produce tears and my clonazepam luckily makes my mouth normal which is an odd side effect of it, but the dryness is awful. I did ask someone once if the oils and whatnot have that side effect and was told they do. I did see the program about Charlotte’s Web, so I do think medical marijuana has its place for that and other diseases, but I seem to need meds that raise my norepinephrine which in turn raises my pain threshold to an extent and helps me sleep. Who knows why we’re all so different? I got so sick from that new med you’re on (Neurontin 12 years ago) and it did nothing, but then others do well with that class of meds. There’s so much trial and error to deal with our pain, but I stopped messing with things and making myself sicker probably 7 years ago. I couldn’t deal with spending the whole day vomiting and laying on the bathroom floor or the disappointment of another med not working.

        Well, glad you’re still blogging and got to CA to get some peace. I lived there for about 2 years and will probably move back eventually if I ever get any help with moving, Hang in there! 🙂

  2. I’m thankful I don’t have EDS. My Dad was on a lot of pain meds. He had vascular EDS. Still I don’t understand why I’ve had increasing arthritis since my early twenties and other painful issues. Maybe it’s my hormones or the endometriosis. If it’s something as simple yet also complicated as a gluten or soy allergy I’m gonna be mad. My son deals with some of the things I do and he’s only 7. His bones are always popping and hurting him. I have that too but surprisingly the blood test came back negative. The fingers on my right hand have been slowly curving over the years. It took me awhile to notice the change. I have such a hard time bowling or doing much with my right hand. Typing hurts but not as bad as writing. So I’m trying to use my left hand more.

    But it is an invisible thing. People don’t know I’m in pain almost all the time. I try to be positive and I force myself to do things and maybe that makes me appear stronger than I am. I know if I go to the doc they’ll just give me pain meds. Because of my Dad’s pain med issues (he was on a crazy amount of morphine and Delauded (spelling?) ) and friends that are addicted I try to manage mine in natural ways. Some pain I can bare…especially in my bones but migraines and stomach cramps/ pms cramps bring me to my knees. Most head ache meds don’t work on me anymore. Besides that I’m not on pain meds. I just tell myself that the pain will make me stronger but I’m sure my Dad was in more pain than me. I’m hoping I’ll build a stronger pain tolerance in case my pain gets worse later in life.

    It’s hard not to cry though because what’s causing the pain limits what I do. My days are planned around my bowels and sicknesses. I feel like a big truck hit me when I play games with my son but I do it anyways and smile. We’re planning a trip to Disney just me and my lil man. I;m worried that I’ll spend most of it in the bathroom and that the pain from arthritis and scoliosis will be too much as I drive. My close family know the world I live in but sometimes I think they get tired of me feeling bad all the time. Shoot…I do too and I’d love it if I suddenly got better. Here’s praying for a miracle.

    God bless and I pray that your pain will cease and that your cries will be heard!

Leave a Reply to an_angel_with_wings Cancel reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s