what to do?!
So my name is J and as you guessed I've got pain! So to keep it short and to not bored everyone to death! ill keep the history short then ill jump into my question, ok here goes. Back in 2012 i got diagnosed with a very rare heart lung condition called primary pulmonary arterial hypertension, yea say that with a mouth pull of pills, Anywho what it is is where blood pressure increases in the lungs putting lots of back pressure on the heart, if untreated you die, simple.
So I got treated and subsiquently im getting pain not only from the condition but from the medications! Great! So they started myself on Hydromorphone or Jurnista as it is branded, now this drug we played with for awhile to get the dose right and i dealt with PMU at my hospital but they would not increase my dose against my own very natural opioid tolerance turns out drugs (any, not illicit) will not work unless you give me a horse dose. Anywho times goes on i get put through the rings and still nothing is changed so i do the unthinkable, i start self medicating, this is the part where doctors and others fold their arms and look at the door, stamp addict on my file and then im back to square 1! So after a while things get too hard and i put myself into a 'opioid substitution treatment program' this is often used from people who abuse drugs to get euphoria not when someone is suffering from something they never wanted in the first place. Ok, so ive been on this 'program' for about a year done all the right things, have not screwed up, nothing nadda nil zitch! And now they want me to get off program and just get on with it. The set back is what to about the pain? I've tried everything literally everything but what works best makes most doctors worry and rightly so.
Luckily I've got a really good doctor who believes me and is looking at me like 'ok you have pain, you know what works, but you have a 'history'', so im in the process of appealing my case and seeing what happens.
So my question is, has anyone else been in this position before? And what did you do?
I do apologise for spelling and grammer mistakes and my sarcasm but at 30 and had been told to not expect to see your....well you get the point.
I also have a very high tollerence to opiods and have done everything possible to keep from being labled a "druggie." I firstly am sorry I can't post my strategy because it would be "edited" and it is unlikely to be of much help to you now.
However you have fallen into the dark hole and I am glad you have found this forum.
What I can post is I use an antipsychotic which numbs the brain, gives me some sort of sleep and without it ironically I would need an antipsychotic for going insane.
Here's the 'fine print' to get an antipsychotic you need the 'appropriate' lable, a Dr to lable you, and prescribe. Once labled, it sticks like mud and stays with you forever.
So I suggest you think carefully before taking this road because it may not work for you and you will be stuck in another black hole.
Sorry I can't be more help,
Once I could laugh with everyone
Once I could see the good to me
Holding the world inside
Now the world is grey to me
Nobody can see you gotta believe it
Oh oh the night comes down
And I get afraid of losing my way
Oh oh the night comes down
And it’s dark again
“The Night Comes Down” Queen