Pain management.

I got inspired to write this post today from a brief discussion about painkillers on Twitter earlier.

 We're many out there living with an invisible or visible illness that causes debilitating pain, and more often than not, we have to fight hard to get proper pain management! Especially people with so called invisible illnesses has to fight a lot, a common belief seems to be "If it can't be seen, it's all in your head" which really isn't the case for the person living with the pain!

 Why does it have to be so damn difficult to get the right medication to live a decent life? Part of the answer is doctors lack of knowledge about pain management, even pain specialists lack in knowledge when it comes to pain not caused by cancer.
Another big reason we have to fight so hard is all the fakers that just want narcotic painkillers for recreational use, and claim they have a lot of pain! That's probably our biggest issue, for how can the doctor see if you ARE in pain or not?
There are ways to see if a person is in real pain or not, it can be seen on how the person moves, how the person is sitting and it can be seen in the eyes, just as examples. On me, my pain is pretty obvious, I can't walk normal- I often walk very carefully as if I have eggs under my feet, and I may have a limp at times. When I sit down on a chair, I either go rigid or can't sit still, I keep shifting position constantly in desperate attempts to get more comfortable! After a short while of sitting, I often sink down towards the table because my back hurts so bad I can't keep it up.
My condition is considered invisible, and you really wouldn't know I'm sick if I'm having a good day pain wise and feel okay in my joints. I don't look sick, it can't be seen on the outside how much pain I'm in. It's not until a joint dislocates or subluxes that you can really see something is seriously wrong with my body, unless you have sharp eyes and notice how my knees are hyperextended when standing or see me using my hands that is...

I have decent pain management now, but I was fighting for months to get there. Doctors saying I was too young to be in so much pain and put on strong painkillers, pain is relentless, it doesn't give a blithering fuck if you're 1 month old, or 99+ years old, pain hits you hard and brutally!
I'm finally being taken seriously by my doctor now, and I get the right medicine that at least gives me some relief for a few hours. It's far from enough, but my situation is at least bearable most of the time.

I know far too many people with EDS and other invisible, painful conditions that are not taken seriously by their doctors or by the society, they get the "it's all in your head" "You're just lazy" and the all time favorite from doctors "Opiates are SO addictive!" It's just wrong, wrong and WRONG!

While yes, opiates may be addictive, but that does NOT mean that everyone gets addicted to it. In fact, addiction is very rare among chronic pain patients because we use the substance for the right reason and we use the right substance, and which substance that is, is highly individual. What works for some, may not work for others. Someone tolerate one medicine but not the other, it takes time to find the right treatment, and often times doctors just prescribe you one thing and are very reluctant to give you anything else even if your current medication doesn't work at all for you.
Doctors also have their magic God pill that cures everyone and everything in their opinion: Amitriptyline!
What they don't realize is that Amitriptyline and other medicines similar to it, only works for a small number of people, and for some types of pain, the dose also needs to be increased slowly and if and when you quit the medicine, you need to taper it out slowly, it also comes with a list of side effects about as long as the old testament!
This is what doctors like to prescribe instead of prescribing a real painkiller, my own doctor tried to fool me into trying Amitriptyline just a few months ago, but sadly for him, I had read a lot about it and wouldn't touch it!

We're constantly warned about opiates and how addictive they are and blah blah blah and as I said above, yes, they may be addictive, but the risk of addiction for a chronic pain patient is low, very low, and we definitely don't take the medicine because it's fun, we take it because we have to to have a better quality of life! If you have the right opiate (if you take opiates) you're not likely to experience any side effects and you're not likely to feel that high that drug addicts seek. The only thing that happens when taking the medicine is that you hopefully get that feeling of the pain just running off you, like a drop of water on a duck feather and feeling more human for a while.

I'm on Oxycodone, after spending many months on high doses of Tramadol that did nothing for me, getting the same poor results with Co-codamol and having no effect whatsoever from NSAID. In between the Tramadol and Co-codamol I was on Fentanyl patches for a few months, the patches were a blessing with adhesive on! By far the best pain management I've had! It was a working pain management that was taken away from me due to moving countries and having to change doctor, the new doctor having the all too famous fear of opiates.
As much as I hated the patches for what they were while I were on them, I loved them for how they made me feel! I had very good relief around the clock from them, meaning I had more energy to do things instead of wasting my energy on pain. I have the same love-hate relationship with Oxycodone now. I hate taking them, but I get part of my life back when I do resort to them. I'm not an addict, nor a druggie, I'm a person living with debilitating pain. I get no side effects from my medicines, I don't get high, I feel nothing except for pain relief. When I don't take my medicine, I feel nothing other than the physical pain I always live with, I have no withdrawal symptoms at all and have never had even when going from max doses of something to zero overnight after taking a substance daily for months.
Another part of the "it's so addictive" nonsense is: If a chronic pain patient does become addicted (even though it's very rare) it doesn't really matter anyways, it's not like the person is going to come off the medicine anyways, in case you haven't noticed, chronic pain is CHRONIC!

This is the part of pain management many doctors know too little about and understand very poorly. I know I'm not alone with my experiences regarding lack of addiction and lack of withdrawal symptoms when it comes to strong medicines.

I hate having to take painkillers that are classed as narcotics, but sadly nothing else works for me. I wish I didn't need to take painkillers at all, not even Paracetamol but my condition makes me having to deal with a lot of pain, sometimes the pain is just too much to handle so I can't just tough it out, or pain makes my brain go haywire from all the pain signals, then I do need some relief, if so even for just a few hours.
I'm never pain free, nor do I expect to be, I'm not even sure I've ever been pain free in my whole life to be honest.


A pain specialist in Sweden once said that painkillers for a pain patient is like insulin to an insulin dependent diabetic: Both take their medicine to get a better quality of life and survive. Taking away or denying a pain patient proper pain management is like prescribing too little or no insulin to the diabetic. Both the diabetic and pain patient might survive, at least for a while but their quality of life may be very very low. The diabetic with too little or without insulin would eventually die from complications of high blood glucose, the pain patient may see no other way out than suicide to end the suffering, or suffocate while being passed out from too much pain. It has happened in the past, and it happens still that pain patients take their own life or pass out from their pain, and it can be avoided, with the right medicine!

I have one thing to say to druggies that fake pain to get narcotic classed painkillers: FUCK YOU! FUCK YOU HARD AND BRUTALLY FOR MAKING US PAIN PATIENTS HAVING TO STRUGGLE SO MUCH FOR THE RIGHT TREATMENT, MAKING US GETTING LOOKED UPON LIKE ADDICTS AND HAVING OUR CONDITIONS QUESTIONED CONSTANTLY! It wastes a lot of energy having to fight for the right treatment, energy that could have been used on more fun things!