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As someone living with Ehlers Danlos Syndrome and having pain as one of the worst symptoms of the syndrome, I had to make the decision about medicine about three years ago now. At that time when I began taking medicine daily or close to daily, I was still working full time at a physically demanding job. While I’ve been in some level of pain all my life, it wasn’t until 2010-2011 that the pain level got to the point where it was affecting my everyday life negatively. Before that time, I had only taken the occasional paracetamol or ibuprofen every once in a while, unless I had an injury or flare of something that required prescription medicines.
Anyways, in early 2011 I got to the point where I could no longer manage at work without painkillers, it was really a choice between painkillers and being able to work, or no painkillers and resigning there and then. Seeing how I loved my job, I went with the painkillers and lasted at work for a few more months before I was laid off due to my health situation in summer of 2011.
By the time I got laid off from work, my pain had already reached the level where it affected my whole life but I was able to workout some with painkillers. I did however have periods where I did not take any painkillers, because I could manage without at times where the pain wasn’t as intense. Then in late 2011 I also had to face going up in strength of painkillers, switching from tablets to transdermal patches because the old painkillers no longer worked, or maybe they always worked poorly, I’m not sure there as painkillers tends to work very oddly in EDS patients.

2012 came and I got off my stronger painkiller and even managed without any medicine for a while before the pain limited me too much again and I got back on painkillers, though a weaker kind that did nothing at all for me, so I was switched to stronger medicine again which worked and I took that as needed only for several months before having a long acting medicine added. I took the combination of long acting and short acting for over 6 months, with varying results, some days I got good effect from the long acting, other days I was wondering if I had even taken it. By June last year after too much fluctuations in the effect of my regime, I was put back on the transdermal patch that I had for a while in late 2011 to early 2012.
Transdermal patches are no child play, it’s pretty damn potent stuff and if used wrong, the substance can kill you. But if used right, it’s an excellent pain management with very stable effect!
I’ve now been on the transdermal patch continuously since June last year, and while I’m far from pain free on it, my pain is brought down to a level where I can live with it and function somewhat as long as I pace myself and rest a lot. I remain on the same dose still, which is also the same dose I was on when I was first put on the patch in 2011. I’m very happy that I’m able to stay on the same dosage, as that medicine generally have you build up tolerance so you need to increase the dose regularly on it.
I am resistant to a lot of painkillers, but when I find something that works for me, it works for a long time and at the same dose for a long time.

As much as I hate being on any substance continuously, I choose to still medicate as it does improve my quality of life, and in my case, completely without side effects! I do wish I could manage without any painkillers, but in my life, taking painkillers is the lesser of two evils. And having my transdermal patch enables me to drive, it makes me physically able to be up more, go places, be social with friends more, I’m able to think more clearly as less pain means less brainfog.

I do actually have a high tolerance to pain though. Having been in some level of pain all my life kinda does that. I can sprain something and just keep going, or even break a bone and barely say ouch. The big issue with EDS pain is that it’s so wide spread, along with being intense and the intensity may fluctuate as well, and then add injuries to that like sprains, subluxations and dislocations. A broken bone is just pain in one place or small area, now imagine having that pain in your entire body, all the time, plus the injuries.

I truly take my invisible hat off to those who are able to live with severe pain without taking painkillers. I wish I was able to do that too and have tried several times, but always end up stuck in bed from the pain so I have to start medicate again! The human body is truly a remarkable collection of atoms. Everyone reacts to pain differently and manage differently. Even if two people have the same pain, one may do well without medicine and the other may have to take medicine, depending on how their body reacts to the pain signals.
“Giving in” and taking painkillers to manage is not a sign of weakness though, you just do what you need to do to regain some function, Only idiots would take painkillers for fun!

As for addiction, dependence and tolerance. I am personally not addicted to anything, I do not get withdrawal symptoms if I quit my medicine, the only thing that happens is that my chronic pain creeps back up to the level where it would be had I not been on my medicine, and I would be having more pain flares. Am I dependent? No, not to a substance, I only depend on having a working pain management and it doesn’t matter what substance it is as long as it does the job. Tolerance, well as I mentioned above, I am resistant to many painkillers, and I tolerate horse doses of mixtures of very potent painkillers and severe pain flares like post op pain is very difficult to bring down, but when I’m on something that does work for me, I’m able to stay on a relatively low dose and stay on that dose for a long time without needing an increase.

Again, I wish I could manage my life medicine free, but due to how foggy my brain gets from too much pain, and how limited my physical function gets (and is even on medicine) I sadly see a future with painkillers. Maybe I’ll have the opportunity to try something else one day, non medical like for example a spinal cord stimulator, but seeing how EDS weakens connective tissue, and the dura around the spinal cord is connective tissue, we aren’t really supposed to mess around with the dura if it can be avoided, so I really don’t know. Another downside of having an implanted device is that it prevents you from having an MRI and I may need a fair few more of those in my life, and prefer that rather than a CT scan due to the radiation of a CT. It’s something I’ll discuss with a pain management doctor if I get to see one someday though. I was referred to see one, but seeing I don’t have cancer, the pain management clinic my doctor tried to send me to just sent the referral back *sigh*

I do use alternative methods as well, like breathing through the worst pain if I can, relaxing, using TENS if it’s a small area being nasty and acupressure cushions. None of the alternative ways works good enough though, it just works as a compliment to my medical pain management, and may make me able to get through a flare without taking any extra painkillers.

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