The Bureaucratic Nightmare

Ok, so I am not particularly easy to deal with. I’ve got some far-flung medical quirks that stand in the way of a fairly pain free or low pain life. I have Haemophilia, so I can’t take NSAIDs! And because of the bleeding I can’t have joint injections, implants or other helpful things. I’ve got cardiac issues that block more. Then after 3 years of being a Guinean pig for off-label drug use I was told I was stuck with opiates for pain relief.

After several years of trial, error, titration and grief, my doctors settled on a dose that relieved 50-60% of the pain yet kept side effects to a minimum. I was able to function and work. Then my doctor retired. I spent nearly a year being told I needed to become a guinea pig again because my dose was too high. Then bureaucrats became involved and demanded my dose be lowered.

After a Ketamine infusion it was reduced by half. My pain levels began going up, I was unable to work, and life was going downhill. Oh, but I am above 100 MME. The dose is still too high. Then the pain doctor told me the higher my opiate dose the more pain I would have. No, doctor, with all due respect, when I was at a higher level the pain was reduced. Not according to what HE read... or was told to read.

Next week I am having another Ketamine infusion, and I am looking forward to a month or two of reduced pain. I also am aware the doctor is going to reduce my pain meds again.

I want to thank the bureaucrats and the ignorant pain specialists for telling me exactly how much I hurt, what will ease the pain, and, essentially how to just bully my way through it all. Because when the pain returns, and it always does, I will have precious few choices. I can begin drinking, I can turn to illegal drugs, or I can end my life.

And I do not drink, I have never abused drugs, and I am not going to begin now. So dear doctors and bureaucrats who have chosen to be all knowing (without having experienced it) adios.

Please don't end your life!
I do understand to a degree what you are dealing with. I can't take anything more than Osteopanadol for my pain because of other health issues. I have discovered that medication I've been on for one condition has caused another serious condition that prevents me from being able to use other pain relievers. I wish I'd never started on that prescription medication at all. As a side note, I have never used nor will I ever use illegal drugs regardless of suggested benefits. I don't drink either. In the past, I have imbibed up to two glasses of alcohol on very rare occasions. I simply don't like it. That is me.
I hear your frustration with how this system is operating and acknowledge your pain. Please keep on going. You have kept going this long. Please find alternative methods to distract yourself from the pain. (I use rest and distraction to manage my days.) Sometimes looking for ways to help and encourage others gives us a reason to keep going because we have a purpose. We have the experience and there are others following along behind us that will need reassurance, encouragement and support. We can be there for them even though our own pain can often feel unbearable.
I gave birth to 5 children during my marriage without any major pain relief. I even rejected the "gas" because it smells bad and made me feel sick. I got through that.
This fibromyalgia pain although constant, debilitating and exhausting, is not something I can't manage to exist with. Focus on things you can enjoy in your life as much as possible and don't let this pain beat you down. You can win even if some days you feel like you are losing. If you are alive, you are winning!
Find your joy in life and make that your focus, but don't forget to ask others if they are okay. This is what we all must do. Pick each other up and support each other if we fall down. That way, we all win!
Look after you, please!

No no. I am not going to end my life as such. My intent is, when I am finally told to simply endure it, and when that is no longer feasible, to stop taking all my other meds, and to let the doctors, first hand, see what their callousness can do. I will not stop going to the doctor. But I intend to let nature take its course right their in front of them, and to force them to admit they could have done more.

Hi spd1275,

I was of the belief that you were giving us a warning just in case I notified our mentor (Peter) as I wasn’t sure what to do as I was talking to a member one evening and he was gone by morning so I don’t want it to happen again.
I hope you understand that you are now part of a worldwide forum (family) and you think the mafia was a big one .
I’ve started to use turmeric in cider vinegar and honey at night to reduce inflammation it’s natural and cheap in the Indian shops and I have a bio curcumin in the morning and it does help.

That’s all from me
Johnno