Quote:
Originally Posted by Neurochic
Gerry
I was more coming from the perspective that the "relatively" low dose of fentanyl could be a cause of Hana's less effective pain relief so she might want to look at a higher dose and potentiating with acetaminophen before she decides it doesn't work sufficiently well for her.
I wasn't trying to say that her dose was "small" and therefore less constipating. The reality is that any dose of any opioid will often be very constipating. The effect is compounded and made worse by the fact many of the other drugs in a CRPS patient's cocktail will also have constipation as a side effect. Its a matter of managing the constipation effectively with a suitably powerful regime in the long term rather than stopping and starting and living with the false hope that it will go away or improve.
Painman
The key to living with the pain of CRPS is to rapidly abandon the hope or idea that you will be able to find some drug or mixture of drugs that will allow you to be pain free and"on your way". It doesn't work like that. The very best you should expect is that your pain levels will be reduced to some extent. You then have to decide if the reduced pain levels you achieve are sufficient to warrant the side effect profile you get from that particular mix of medication.
Accepting the pretty unpleasant reality that you are only going to be able to try to manage your pain levels rather than 'getting rid of your pain' is fundamental to living with chronic pain. It doesn't mean you are giving up or not trying - it is possibly the single most important (and difficult) step in the process of learning to live with CRPS.
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see Ihave accepted this beast as part of life, what I haven't accepted is the treatments they are offering. do not confuse the differences.. I have studied this beast as well as the next so much so I am more knowledgeable than My dr,s.. (about RSD any how) so I know remissions are far and few. But I do know that keeping me on the same cocktail for 5 years isn't progress, its plateauing . so where as the treatment remains the same aside from the injections blocks etc. My RSD has spread from the right leg to areas from the waste down, both arms and part of my skull. plus my back is getting worse as well as my neck due to the way I walk and move. when I say up and go I mean bring my pain levels out of the sky from 1100 to 9. It would also be nice that all of My drs research this beast as much as I do so when I go to them with issues such as Skin pealing in thick layers, and MRI causing bone ripping pain they would say more than just "INTERESTING" this is a neurological infliction I would presume a neurologist could answer these questions, but thus far none have. JOHNS HOPKINS Dr,shad nothing to add either, and all the specialty places such as the crps research center in Florida and the CRPS institute in Manhattan. They do not take insurance there for they will only see patients with money who can afford a 700 consult just to come up with the same DX I already went to them with..I mean come on...I have to come to sites such as this to see if my symptoms are seen amongst other sufferers and ask how they deal with it.. why bother having Dr's at all at this point.. the past two weeks I have been suffering the worst pain I've gone through since the beginning of this mess I have no way to budge the pain.. and that is unacceptable.. I am disappointed I m angry, and tired of being in pain and watching this beast control my body and life.. I am not one to lay down and accept defeat so I will not be OK with saying there is no cure.. there is one its just no one is looking into it because there is no money in healing people like us just money in giving out worthless pain meds.. and for people who are loaded ?? they are the ones who get stem cell treatments..(yes these are stem cells from your own body no-one ws hurt to get them) but Pain drs would love to shove a spinal cord stimulator up my bum.. or a pain pump.. how about using some time to properly map the pain signals.. and monitor your natural chemicals to see what changes during a flare.. I will never give up on a cure, I will continuously look for remission, I will fight for a better life until my last breath .. who ever told you that accepting defeat is the better way should be looked at .. it sounds like government propaganda.. there is no person animal or plant that deserve less than a full life.. FULL meaning whole body,mind,and quality of life....I assure you that is what we all agree on here other wise we would not pull together on sites like this....god bless all ,, here is hoping for a pain free day, and the hope of cure