For many years after being diagnosed with Ehlers Danlos Syndrome which causes chronic joint dislocations and widespread severe pain- I was treated by pain management with a steady, unchanging dose of opiod pain medications (on top of a host of other efforts- from chropractic, to p/t, to bracing, to meds for other symptoms,a spinal cord stimulator, etc etc etc).
There's never been a question about the legitimacy of my pain- it's documented in arthritic change on MRIs, I was approved for SSDI, etc. I have been drug tested constantly, and have never once misused my medication or been accused of anything shady. I've been a model patient.
With much of the worst of my chronic pain controlled adequately by 100mg long acting morphine, I was given 4mg dilaudid for breakthrough pain to use as needed. Over a two year period, I had voluntarily cut back the number of pills a day I was given of breakthrough pain meds- I started at six, down to five, then to four- at MY request.
Id told them that I was having meds left over and requested the decrease, believing this was the responsible choice. All was well.
Nearly two years ago now- my pain doctor retired, unfortunately given little notice- his patients were dumped into a new clinic that bought his practice. I was incredibly uncomfortable- there was no more exams, no more discussion of my symptoms or how id been- I was tested, handed pre-printed scripts and rushed out the door. That was that.
I started looking for a new doctor- that's not the quality of care Id accept... But you can't just go to multiple pain doctors, I had to find one who I trusted and who knew my condition.
So a year in with this horrible place- I roll in one day and I'm handed two scripts... But this time the ER medication is for HALF of what I've been on all these years. No explanation- no reason- literally no discussion. And when I'm like "Woah, wait... What?!"
I'm told: "it's not up for discussion. Take your scripts and leave. In two months, were cutting it in half again, so you'd better get used to it."
It took three months, now able to do less than HALF of what I once was- I can't cook dinner anymore, I can't grocery shop without my seven year olds help- I can't drive most days. My sleep is horrible, my other symptoms, many of which were fairly calm for years- are flaring up left and right, and my life is pretty miserable.
It was explained to me early on: you take long acting medication which should lower your pain to a barable number around the clock. The immediate release meds are much shorter acting, and you take one, maybe two, as needed, when individual incidents cause breakthrough pain that isn't controlled by the long acting medication.
Early on, I would forget to take my medication on time and would wait until it was unbarable - my doctor explained: "Always stay ahead of your pain, because your condition is chronic and persistent. It is not just going to go away- and trying to play catch up is much less effective. Take your long acting on time, every time, so that your pain is controlled and you'll need much less breakthrough medication."
And so I have, for years. For years, I'd often gone a day or, even days at a time without taking breakthrough meds. At times, I'd get three decent days without needing any. Other times, when I'd have a really bad issue with a knee or hip, the breakthrough helped make it barable.
But since cutting my ER medication in half- it's been a horrific eight months, the worst eight, hands down, since diagnosis. I'm unable to do when a fraction of what I could. I'm a devistated as a parent, to have to rely on my young child to do SO MUCH around the house to help me. I'm not talking "help feed the dogs" - I'm talking "can you make mommy lunch because I'm in too much pain to go up the steps to get a sandwich... Oh, and can you feed yourself too?" We were homeschooling and my ability to do that has sharply dropped off. We dropped out of scouts and the regular homeschool trips we'd take because I can't drive most of the time or physically do anything without my husband to push my wheelchair- and that's if I'm even well enough to shower and change clothes. My life is MISERABLE compared to what it was two years ago.
I like and trust my new doctor and the PA I see every month, even though I feel that she doesn't understand my condition all that well. I know doctors are busy and I'm just a number, more or less. But my entire life revolves around my pain, my inability to get quality sleep, and I am depressed to the point of feeling deeply guilty that my son has a mother that can't do anything for him or with him, and at seven years old, he's frustrated to be taking care of me. We had even been trying to go through IVF before this medication change - and even though I knew I'd have to lower the pain medications temporarily for a pregnancy- I thought that I could handle two children with the life I had two years ago.
We'd already spentbut$24k on getting healthy embroyos prior to the sudden medication change- so we went forward with one round of ivf but it failed. I'm not surprised- after all, my quality of life has been garbage since the ER Medication change. We decided to quit and my entire future and the family we spent all that time and money to have... We have now quit, because my life just isn't worth living in this much pain & I can barely raise my seven year old, let alone a second baby. So this medication change has effectively ruined my life.
When I first met with the head of pain management for the large hospital system in my area, the office who now does my medical pain management- the doctor said that the sudden change to my medication didn't make sense to him, that the extended release medication IS supposed to adequately control most of your pain and that it's not ideal to be taking breakthrough often because it's less effective and your tolerance can grow rapidly. He agreed that suddenly cutting my medication in half was not appropriate and that he agreed- this clinic that bought my old practice was not handling my case appropriately. I asked if they would take over my care, and he agreed. Within the month after, I attempted to get my records and start with the new office.
Since starting with thier practice, I had first explained that I was going to stay on the lower dose, despite all the problems I've been having, because we badly wanted to have one more baby... I explained that I understood that I'd need to lower those medications as far as possible and I had a fantastic reproductive endocrinologist and OB Team that was fully supportive of managing a pregnancy while on the medications... But it's over. We're out of money and the ivf transfer failed. Now, I just want to focus on trying to get my life back together and dealing with the dissapointment of not being able to have the child we all badly wanted.
I've expressed my series concerns to the PA I see every month- about all the symptoms outside of pain that have increased substantially since my ER pain medication was cut in half... And her response was "We are strongly pressured not to increase anyone's medication for any reason - but we don't want to change your medication at this time. After all, you've been at this dose for the better part of a year... So we're just not going to change anything."
She's pushing for the intrathecal pump, which the doctor who did my spinal cord stimulator thinks isn't an appropriate option for me because he says it only targets localized pain and with ALL my joints dislocating, he believes my hands, arms, shoulders, neck, knees, feet, ankles, etc etc etc would all be WORSE with the pump because that medication wouldn't target anything but my low-back.
She mentioned sleeping pills, muscle relaxers- medications I've tried with substantially disturbing side effects or that have performed extremely poorly - not understanding that if my pain was adequately controlled, I wouldn't *be* unable to sleep or eat, or be active enough - her response was "So what you're saying is that opiods are the only thing that will help."- and I'm saying - no... I just want to go back to the medication that adequately controlled my symptoms MOST of the time, and that didn't have side effects.
She suggested sleeping pills since I'm not sleeping properly. Id like to express that if I was in less pain, and could DO more than sit around helpless- that maybe I'd sleep more and better. But the doctor doesn't seem to want to hear that. What she said was "so you're saying all these other medications have side effects that are bothersome, but the pain meds don't."
We'd only discussed Ambien, Valium, and Xanex, all of which I'd been put on for trials early on in pain management for muscle spasms and that had very disturbing side effects- Adding a sleeping pill Ambien that has terrifying side effects, is not the answer. Then I'm severely impaired, unable to react in the middle of the night, if God forbid there's an emergency- I'm dealing with memory lapses - and I understand that they are trying to make suggestions outside of raising my dosage of ER morphine- but I can't be put on anything that makes me impaired, and less able to function, think or drive- that's why the medical marijuana has not been nearly as helpful as everyone hoped. In any amount that works for spasms or pain- it completely knocks me out for 20+ hours and heavily impairs me. I can't be a parent like that- I can't even care for MYSELF like that.
But when I tried to explain any of this, in a monthly appointment where you're already feeling rushed because the doctor has a million patients lined up waiting- she (the PA) made it sound like I was making excuses as to why I needed the pain meds and wouldn't try something else- there's just no winning.
Anything I say to explain what I've already been through before with other meds before becoming her patient is dismissed as an excuse or argument. It makes me feel completely helpless and as if there's no point in trying- she asked three months in a row how I was going to attempt a pregnancy while on opiod pain medication, despite having an entire team of specialists supporting our efforts to get pregnant... So why would I expect her to understand how horrifically this medication change has negatively impacted my life? Why would she remember that the entire reason I came to her practice in the first place was because the clinic I was at was not listening or caring about the impact thier changes in my medication had made on my life. All I've determined after three months of discussing the same thing again and again... Is that ultimately no one but me cares about how this has impacted my entire life.
No one cares that I don't want to take four, seven, ten extra pills each day, to battle symptoms that are being caused by my condition- but that are being *worsened* by my being in constant severe pain. No one cares if I am constantly depressed and feeling like the worst mother in the world because I need my kid to take care of me because my legs don't work, or that I can't go to the grocery store because I probably couldn't make it to the bathroom in time.
Regardless of the pressure that's on them not to increase anyone's meds... I'm not sure why it is difficult to understand what I'm going through. Literally every single physical and mental issue I've struggled with since last August is caused or completely exacerbated by being in constant pain- and it's pretty clear that even if I agree to expensive, painful surgeries ... Even if I'm flat out told it's not likely they'll work...
It seems like there's no end in sight of being in constant endless, severe pain that completely controls every single aspect of my life.
I am still struggling - I'm still documenting ALL my symptoms in an app, even though it's just one more painful thing on my daily to do list.... In an attempt to dispute why I should be struggling and taking constant IR medication (that after one or two doses is ineffective if you don't take a few doses off in between)- and trying to get them to put my ER medication back at the higher dose- but Ive been told three months in a row "we really just don't want to make changes to your medication right now" .... "We'll keep monitoring how things are going, but we don't want to make any changes right now ..."
I guess the hope is that I'll agree to the surgery, even if it doesn't work or makes everything worse, because then I'm not her problem or patient anymore. Or that I'll die, and then I'm not thier problem anymore either.
When talking to your doctor at every appointment is a dead end, and results in absolutely nothing changing... What is your other option? Suicide?
And why is this okay to be doing to a patient who's never been anything but reliable, responsible and who has followed ALL the rules, every suggestion that MIGHT help, etc etc etc.
Why is any of this okay?
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.