Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-14-2013, 11:32 AM #11
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try 50mcg fentanyl patches,they work for me,however they are 80 times more potent than morphine,and pregablin,good luck
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Old 03-14-2013, 11:58 AM #12
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Hi,
Just wanted to tell you that senna tablets help with the constipation. I take three of them a day and it usually keeps me going pretty good. I have to take opiates daily also. You gotta do what you have to do.
Hope this new combo of meds works out for you. Good luck.
Much love,
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Old 03-14-2013, 12:02 PM #13
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By the way, I take MS Contin 30mg twice daily. They are long acting (twelve hours). I have found relief with these. But have been on them since 2009 and am finding I may have to add a short acting pain med at times due to seizure pain and migraine headaches.
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Old 03-15-2013, 07:28 PM #14
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Not to hijack your thread, Songbird, but I was just wondering, Brain, if the senna tablets have any side effects. I'm taking a couple of things that are causing "problems".
Thanks!
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Old 03-15-2013, 08:17 PM #15
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Quote:
Originally Posted by Kymmie67 View Post
Not to hijack your thread, Songbird, but I was just wondering, Brain, if the senna tablets have any side effects. I'm taking a couple of things that are causing "problems".
Thanks!
They stop working effectively with prolonged use IMO. 1-2 apples per day can provide significant help.
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Old 03-15-2013, 08:59 PM #16
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Personally im on a fent patch 50mcg and 20mg oxycodone 4x a day and valium 10mg 4x a day and soma 4x a day. And that combo just holds me over a tiny bit. So i need my meds upped. But I dont just have RSD i also had 2 botched surgerys befor it, so i deal with alot more then "just" the RSD pain. So between the 2 conditions the pain can get pretty horrific.
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Old 03-15-2013, 10:49 PM #17
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Quote:
Originally Posted by tos8 View Post
Personally im on a fent patch 50mcg and 20mg oxycodone 4x a day and valium 10mg 4x a day and soma 4x a day. And that combo just holds me over a tiny bit. So i need my meds upped. But I dont just have RSD i also had 2 botched surgerys befor it, so i deal with alot more then "just" the RSD pain. So between the 2 conditions the pain can get pretty horrific.
I am sure your conditions are genuine and that may be a wonderful cocktail, most would love that array. But combinations of medications like that are what take lives. Tolerance to medication has nothing to do with multiple cns depressors taken at a time. That stuff can stop your breathing when you sleep.
I really never ever speak on others med use, but for a doctor to prescribe all that in conjunction, makes me sad.
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Old 03-16-2013, 03:38 AM #18
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I agree, after having RSD. TOS. etc. since '83, Methadone, periodically (3x) 20 x 10/ X10 day (60 Pr day) I"m NOT a doctor! then diazepam up to 20x per day, then 60mg of Cymbalta/day, (Later) and whatever else your doctor needs is necessary! REMEMBER. I AM NOT A DOCTOR!!!! Take their advice, over and above, my own!!!!!!!!

Pete

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Old 03-16-2013, 09:43 AM #19
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When I'm late taking my neurontin the sharp pain becomes unbearable. I think docs say you're supposed to take it every 8 hours, but that's not often enough for me. I take it every 5 or 6 hours and that heads off some of the pain. So neurontin--the good old stand-by works best for me and lots of people in forum say same thing. Some like lyrica better but, like you, this med makes me sick.

Other things that work for me: Fentanyl patch, MSIR (quick acting morphine), and, definitely Biofeedback and deepbreathing exercises.

I've also learned that each med hits a different type of pain.
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Old 03-16-2013, 01:56 PM #20
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Yeah I had 2 botched TOS surgeries. So my coctail of meds is what I need. I didnt start out on all of them at once and obvisly we tried other solutions for a long time. So when you have your ribs and neck muscles taken out of your neck and chest, let me know how you feel! Pete here below knows what TOS already feels like, but to then have RSD added into the mix. Well its a wicked combo that I wouldnt wish on anyone! We have aways been careful with my meds and this dr doesnt even usally prescribe the combo i have, but she knows what TOS is and then how bad off i was after the surgerys and then the RSD. So we have balanced my meds very carefully over the years to get to where i can atleast function. I think Pete below understands what im talking about. You can even go to the board below for the TOS paitents and i honestly cant go on it because it makes me sick when i see "im having surgery" because it ruins your life and they dont know it. I wish i would have done my research to see how bad the surgery was. But I didnt, i wanted to be a normal teen and get back to work asap because I was planning on being a PT. But a few days after surgery and you relise your worst off then you were befor well thats when you know youve just been screwed over. When your ribs clamp down like a vise grip so it makes it hard to breath, or your one arm isnt even much of a use anymore, or when it feels like a knife is going in and out of your chest over and over or when your neck hurts and its stuck tilted to the side because one to many muscles were taken out, or when your scapula hurts and again feels like a knife is just going up and down over and over because you have a palsy and it no longer holds on its own or when under your armpit hurts and its a deep boring pain, most likely because to much muscle was cut threw and nothing was repaird after. Oh and all this was just a trial, so more could have been done and I wouldnt have known it. Add the bilateral RSD to it and its just grand! And when every DR you see tells you im sorry to much damage has been done theres nothing more we can do, its great! So while most would just LOVE this combo because how wonderful it is, I DONT! I would much rather have my life back. I do my research now, im very careful and again we did not start all this at one time, its been very slow over the past 6yrs to get everything just right for my body and my needs. So thank you for trying to understand!




Quote:
Originally Posted by Morgan Herritage View Post
I am sure your conditions are genuine and that may be a wonderful cocktail, most would love that array. But combinations of medications like that are what take lives. Tolerance to medication has nothing to do with multiple cns depressors taken at a time. That stuff can stop your breathing when you sleep.
I really never ever speak on others med use, but for a doctor to prescribe all that in conjunction, makes me sad.

Last edited by tos8; 03-16-2013 at 02:45 PM.
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