Looking for advice

[1693]

I am a devices survive and have a lot it trouble finding pain relief drs allway want to change what works best miserable

[deejames]

Hi 1693. I am not sure what a 'devices survivor' is. Woukd you explain a bit more then I would able to comment maybe. Most people on this forum have trouble finding the pain relief they woukd like. Unfortunately there are no pain 'killers' but hopefully you will be able to get some answers about ways to help.

Dee

[1693 in reply to deejames]

Hi Dee. I live with Devic's disease (also called Neuromyelitis Optica and similar to MS). It took the myelin sheathing off large portions of my spinal cord and brain stem and caused lesions on all areas. It causes the nerves to short out and send excrutiating pain signals from hips down to toes even though I can take a metal rod to my feet and can't feel it the pain is overwhelming from the actual nerves. It would be similar to diabetic neuropathy. Took out ability to urinate without catheterization or to have a bowel movement with out a pill and either suppositories or enemas. I went through almost a year of gabapentin (extremely high doses that messed with my ability to see, antidepressants that made me aggressive, etc. I was finally put on Opana ER and oxycontin that relieved some of the pain, yet didn't make me tummy. I lost my cobra ins., so pain management switched to 10 mg methadone 4xday and oxycontin 5mg 5xday. This allowed me to have some quality of life, not take all the pain away(Just numb it) and not be lethargic or "stupid". I've lived like this for 6 years. I moved and came back to my original pain management. She decided there were "so many new avenues" out there for me and started me at ground zero. Put me on Nucynta. I became aggressive and had a host of ailments. I stopped them after 3 days as violence was becoming major as well as fever and couldn't deal with,anything....no pain relief. She put me on lyrica again which I had taken before and had the same affects as the nucynta. She said they just didn't have me on a high enough dose. The lowest dose makes me aggressive. I popped my wife (I've never laid a hand on a woman, especially my wife of 25 years). I removed myself and stopped taking the lyrica told the Dr and she's left me hanging said this medicine can't do this especially violence and no fever. I was just have a virus for fever. Come to find out, I talked to my Neuro., my Neuro opthamologist and my rheumatologist. All 3 said it sounded like serotonin syndrome. I've never, in 7 years been off count in my meds., have never asked for a higher dose, nor taken more than prescribed. I've followed the contract yo a tee. My rheumo. Said there's no reason for this and was going to put me back on my original meds., but can't because I carry a contract with pain management and it could get us both in trouble. I'm miserable, will not hurt my family and just want to be able to have quality of life and do things with them. I can't take the pain. I do nothing. She wants a Neuro stimulator in, but when they tested me, when I got dx'd 7 years ago, they tried my legs in my feet and legs. I literally had burning flesh and smoke coming from them as I couldn't feel it and they burned me. I refuse to get the stimulator due to that and no pain pump. If something goes wrong with Medicare I need to be able to afford my medicines. Neuro at mayo clinic in fl. Said not to mess with anything because I can somewhat walk and that runs the risk of messing something up that's not messed up. Sorry this is so long, had wife type it and she tried to get the most info. Out there (paralegal). I dont know how to have my pain dr. Go back to what i was. She says i'm her best patient, yet I'm off all meds and have extreme pain. I cant take antideprwssants my body just doesnt handle them. My regimen worked for 6 years and I have to start all over even though I've never done anything wrong. Just need a little relief. Not dealing with no pain relief at all especially after 7 years. Help appreciated.

[deejames in reply to 1693]

Wow. I hardly know what to say. I've had seretonin syndrome due to interaction of Fentanyl and serialise. Struggled for breath. That was main symptom. Very anxious.

I can't suggest anything particularly as I don't know the USA system.

I am on a cocktail. Tegratol for nerve pain and Tapentadol for the osteoarthritis. The Tapentadol has a extra function as a antidepressant. It has certainly allowed me to deal my pain and difficulties. However my pain, although fierce at times is manageable. Disabling though as my life is severely restricted and isolating.

It does sound incredibly frustrating to have lost a system of pain relief that worked for you. What is the plan ? Is there one ?

Dee