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 10-16-2009, 11:12 PM #1
bobber bobber is offline
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bobber bobber is offline
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Cake
One thing that you may want to monitor and speak with your dr, when I first went on pain meds i did ok,,but thru multiple surgerys[ball player] in the last 6 years,,the liver gets sensitive to all of our meds,and i started to have early adverse effects,,,Pain meds when the liver is weak causes respirtory problems and the heart causes this as well,,,also an allergic reaction can do this as well,,but from my dr's point of view,,after years of useing meds,,our livers get so sensitive that even a smaller amout causes adverse effects,,and also that pain meds weaken the heart and are hard on the heart,,thats why alot of elderly patients to whom i know who are in pain cannot use them,,but a weak heart and liver , run hand in hand,,plus all the other meds that we have to take does indeed overload the liver and heart,,,I sincerly hope that you find what your looking for and get pain relief,,This may not even apply to you,,but all info and ideas are worth investigating,,goodluck to you,,,,,,,,,,
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Cake (10-17-2009), loretta (10-17-2009)
Old 10-17-2009, 02:25 AM #2
Cake Cake is offline
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Cake Cake is offline
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Thanks for your replies

On the methadone point- I tried methadone for the first time a year ago, but unfortunately I had an allergic reaction to it. I basically spent three days lying on my bathroom floor, lifting my head up to the toilet to throw up, then collapsing down again. It wasn't nice at all and nothing eased it, so we sadly had to give up on that one. I was really hoping it would work, as it's very similar in nature to ketamine and I've had some great results from ketamine infusions.

On the liver point-this is something my Dr monitors a lot. After I had my c/section with Hannah three years ago, I got a nasty infection in my uterus and was in and out of hospital for weeks, due to hemorraging (I know I've spelt that wrong but my brain's a tad strained right now, lol) constantly and a huge amount of pelvic pain. I was put on both IV and oral antibiotics- two types of oral ABs at once plus the IV ABs on top of that when I was in hospital.

I then had a scheduled ketamine infusion when Hannah was 8 weeks old and it caused my liver to screw up. My AFT level went from 50 up to 80 in one day (50 is normal level), then a few hours later up to 103, then 4 hours after that, up to 160. That's when they decided to cut the infusion short and end it before my liver reacted even more. They said that between the ketamine and the uterus infections (and the massive amount of antibiotics I had in the weeks before the infusion), it just put too much strain on my liver.

Thankfully my AFT levels went back to a normal level within 2 weeks, but since then my liver has been monitored frequently to make sure it's functioning normally. I've had two more ketamine infusions since that one and they kept a very close eye on my liver function each time, and each time it was perfect, thank god!

My pain specialist says my RSD has gone too far for a lot of medications to help- technically it's central neural sensitisation now- and he put me in the "too hard" basket , which I'm battling to stay out of so I can access all the help I can. I wish my pain responded better to other medications, but after 9 years of this lark I only get relief these days from opioid based meds. I keep going back to other medications, such as neurontin and lyrica, to see if they'll help, but they don't anymore.

But I always have great pain relief when a ketamine infusion is running, so I'm really hoping that soon we'll be able to get ketamine tablets or boosters here in Australia so that I can be on it in some form every day, instead of having to go into hospital to have an IV infusion. Until that happens, I'm stuck with opioids.

Thanks again for the replies. I'm really hoping the MS Contin helps, I don't think I could cope with being in this much pain for much longer. xx
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RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS.
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