help, my maldynias want to walk off with me!!!

[onolan]

I ceased (no taper) diazepam 5 months ago.I did this in an effort of being complete with my detoxification from methadone, neurontin and diazepam. I had been taking these drugs (adding in the neurontin in the year 2000) since 1992 for neuropathic pain. I detoxed from the methadone and stopped taking the neurontin 37 months ago because (39 years post
injury: t11-t12-l1 skeleton level/spinal cord, cauda equina incomplete) my maldynias were breaking through the effects of these drugs. I had no concept of the voyage I had undertaken so it has been a very, very, REAL, eye-opening transformation, that I REALLY hope is nearly complete!!!!!!!!!!
Two and a half months ago.I started to have extraordinary episodes of pain. I then wondered where I was headed relative to the pain, was I going to be able to manage the pain or was it it goingto CONTROL me? Hmmm, now these maldynias are gaining power. They are hungry, awake,
voracious, leave me gasping and reeling----they have a will of their own and would seemingly up and walk off without me, uh help?
lyrica? nope
ssris? unh---ugh
snris? unh -ugh
diazepam? at least I know this creature
like I said, help!

[firesmurf]

i applaud your huge undertaking,really. that had to be an insane taper off the types of meds you were taking and for so long. all of them have their very own ways of showing themelves as they leave your body. i can only imagine that trip. are you under the care of a good pain doc or were you just getting your meds thru a regular primary care type doc? so what are you taking right now for pain,anything?

i am assuming from your description that the majority of your pain is neuropathic or central in nature? was there a specific reason why you chose to not be on the meds you were taking anymore? i am just wondering how much those meds were actually helping when you went off and REALLY felt the pain without them? big difference there or no? have you tried any of the long acting narcotics other than the methadone for your pain? while alot of the more insane types of pain we can get from SCI don;t respond well to narcotics,to some degree thay CAN help to disassociate from it to a certain point. since there was injury there that caused the SCI to begin with,generally,there are certain aspects of our pain that will also respond to narcotics too,just becasue it is generated more from structural/mechanical reasons,you know what i mean? there can be spinal involvement,muscle and joint involvement,in those cases some narcotics can help.

just exactly what areas are involved with pain and what types of pain do you feel? what else have you tried besides what you posted here for pain relief?

i too have had problems with both cymbalta and lyrica,they both had such horrid side effects i had to stop using those completley so i rely on lido patches for my central flare ups(otherwise i really am not treating it or keeping it covered all the time with them) and my TENS unit really helps alot with my RSD pain in my knee thru my foot. for my other pain i take oxycontin and muslce relaxers and started a new therepy about last sept called myofascial release and craniosacral therepy. this therepy has helped me alot in dealing with the muscle crap that triggered from having all the thick muscle cut thru with my spinal cord surgery back in 03. i also have what can get really out of control spasticity in both legs which this therepy really helps too. i also have a c spine that is kind of deteriorating. i also have a kidney/liver disease that is enlarging my kidneys and creating its own types of pain syndromes and creating more pressure upwards into my c spine upper back and shoulder area . great fun addition to what already was bad there. i just had a rotator cuff repair done on that same right side as well. its a flippin mess. this area is where that myo release works the best at loosening up the overtightened areas. the myofascial release alone helps me tons in keeping things a bit less inflammed and too tight. it is the ONLY real therepy i have tried(tried many over the years) that just gives me positive results that last and i can really "feel" when i am done. i actually spent two whole days with almost no real spasticity in my legs. my legs didn;t know what to do without that over tight braced type feeling holding me up? very crazy. it just keeps the explosions down to less intense.

knowing what you have already tried may help here in giving you the best possible info on what you could still try. and if you have an actual pain doc helping with this. what types of pain do you have an where are they located? marcia

[onolan]

Marcia, thanks for asking; i'll indicate your questions with an m and my replies with a p.
m i am assuming from your description that the majority of your pain is neuropathic or central in nature?
p yes this is so, the lion's share, though i have some minor structural pain in my left hip.
m i am just wondering how much those meds were actually helping when you went off and REALLY felt the pain without them? big difference there or no?
p no, no difference. The pain meds, neurontin (especially), and methadone made little difference. The diazepam DID CLEARLY make a huge difference. I wish I had known better before i decided to run just where this most recent surge to be free would lead.
m was there a specific reason why you chose to not be on the meds you were taking anymore?
p yes, i was seeing a neurologist until the begiining of 2006, i quit him when i quit the drugs as he was not doing anything to learn about the chaniging state of my neuropathies, all he would offer was lyrica, a new and more compromising door to admit me ever closer to oblivion. Now i reiterate: the neuropathies were no longer held in the check that they had been for a long time by the methadone and diazepam..
m Are you under the care of a good pain doc or were you just getting your meds thru a regular primary care type doc? so what are you taking right now for pain,anything?
.p Since late April (2 months after ceasing the diaxepam) i have occasionally used cannabis, twice i used 5htp, and twice lyrica which i got from my primary care doctor and took at his behest. I'm still recovering from the half dose of lyrica i took last Saturday night. 5htp acts and feels very much like lyrica though a little bit less stupefying and cannabis gives very good relief while actively under it's influence but it's not a sustainable thing to be continually so.
m just exactly what areas are involved with pain and what types of pain do you feel?
p My pain involves all the dermatomes of my legs, feet, buttocks, and groin and spills over to the adjacent unaffected dermatomes. It is a tingling tension sometimes lancing, lightning like, that builds over time. It doesn't generally pass on it's own rather i must actively manipulate the affected regions to accomplish any substantial relief (read a few minutes at most of quiesence). In doing so I often must tease out or lightly touch the hyper-excited zones, the tingling is actively associated with goose bumps all over my body and i feel where i touch. The pain moves under my touch in waves of intense tingling disharge, a rough analogy would to say that it resembles how a sea anemone reacts to touch.
A final comment: i have gained much by this attempt to free myself from the thrall of the drugs but the cost in pain is very high, cost in terms of lost ability to cope and active corrosion to my overall health

[onolan]

Hi, Marcia and all other watchers----

I went to a neurologist associated with the local sci etc rehab clinic, he had me try cymbalta, pain is markedly worse, headache as well as small nausea attend this non-starter, he said it was about 60% of the strength of lyrica on the effects scale-----yeah this is so and it increases the pain---help