Managing pain, my journey this far.

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 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.

Pain management, a little informative rant.

It's often a hot topic within the chronic pain communities whether you should take painkillers or not and what rights you have as a patient when you see your doctor.
To be honest, whether you take medicine or not for your pain is a totally personal decision and if you decide that taking medicine is the best for you, that is your choice just as much as it is someone's choice to not medicate. Whichever you choose is right for you and don't let anyone tell you that you're doing the wrong thing. It's YOUR body and your pain and your pain experience!

Getting the right pain management can sometimes be a hard nut to crack, doctors in general have poor understanding of chronic pain and the pain specialists are too few and here at least, mostly focusing on cancer patients, so for us who live with an invisible disorder where you can't physically see the pain unless a joint is dislocated or worn out, it can be really difficult to get the right help unless you're doing your homework and being honest with your doctor. It happens for most "invisible pain" fighters at least once that medical professionals question our pain as it can't be seen, and we get looked down upon as if we're faking the pain and just wanting morphine to get high.
As a pain patient, you have the right to adequate pain management so don't give up! Keep fighting with the doctors if you have to!
Many of us are very good at hiding exactly how much pain we're actually in, we can hold a straight face and appear happy and fine even though we're screaming inside from the pain, only very few get to see our facade crumble and those who see are usually those who spends the most time with us, like our closest family. It can take a long time to be taken seriously by doctors, and even longer to have a working pain management as you start on the weak stuff and work your way up to where you have enough relief. Sometimes it's a fight to get something better when your medicine isn't working for you, there's a general fear of morphine in the medical community which is quite understandable as there are people out there who fake pain only to get more and stronger medicines. Doctors are also worried about addiction, but what they don't realize is that a chronic pain patient hardly ever get addicted to morphine if they are on the right kind and for the right reason, and we also don't get the high which addicts are addicted to. The only big issue for a chronic pain patient taking any kind of morphine is that tolerance may build up over time so the doses may need to be increased from time to time.

From my own experience, I can only say what it is like for me who's living with EDS, and what it may be like for EDS in general. We tend to be either very resistant to painkillers, making it very difficult if not impossible to manage our pain well enough, or we may be extremely sensitive or severely allergic so it's difficult or impossible to find something that works for that reason.
I personally belong to the fairly resistant category, I have never been high from any kind of heavy duty narcotic classed painkiller, and I have no relief whatsoever from anything weaker than Oxycodone. I'm only on a low dose though, but again, nothing weaker will do shite for me, and unless a miracle happens and I wake up pain free one morning, I'll be on Oxycodone or another type of morphine for life.
I hate taking medicines, and don't take anything that doesn't help me feel better. The long acting painkillers I take twice daily do help me to get a slightly better quality of life and make breakthrough pain less frequent and slightly easier to treat compared to when I didn't have a working pain management. So despite hating to take medicines, the positive effect I get from it makes it worth biting the lemons of life.

There are many out there who refuses or can't take painkillers, or find other ways that works for them in managing their pain. If you refuse painkillers and can cope anyways, good for you! If you find another way of managing your pain, that's great. I really feel for those who really need medicine, but can't take any due to allergies, or who has no effect whatsoever from even the strongest medicines on the market.

Those who refuse painkillers has their reasons to do so, and their reasons are of varying nature. I don't say they're doing the wrong thing, but I will snap at them if they say I'm doing the wrong thing because I do take painkillers. Everyone has the right to choose which to do, and the only thing that is wrong, is to say another person is wrong in their choice of taking medicine or not.

There are many alternative ways to treat pain. It can be a TENS machine that sends electrical impulses, acupuncture, massage, relaxation exercises, physiotherapy, yoga, bracing, hot showers or baths, hydrotherapy, just to mention some. So if you don't want to, or can't take painkillers, there are many things to try. I've tried a fair bit of alternative ways but none of it works for me other than bracing but the bracing doesn't substitute my medicine, it just makes me need less rapid acting. But that doesn't mean alternative treatments won't work for you!

Whichever way you treat your pain, I hope it's working for you or that you find a way to get more comfortable!

Zebra hugs <3 p="">