Hi Cake,
I have had CPRS/RSD in over 40% of my body for 6 years now. I was on 100mg of MS Contin 2x a day, 75mcg Fentynol patch (constant feed changed every 3 days), 40mg Oxycontin 4x a day, Lyrica, Clonodine, and Topamax all at the same time.
NONE of it worked! The pain was so bad I was bed ridden and at a point that the doctors refused to up my meds (which I understand). I wasn't far from filling my meds and swallowing them all.
I know this sounds horrible, dark and hopeless and I am sorry.
Then (AAAAAAAAHHHHHH!! Angels fell from the sky) I started getting monthly Ketemine infusions. Within 6 months I was off all meds (with the help of Suboxone) and living at a level 1 to 2 of pain. My life went back to as close to normal as I can get. I could be a mom and wife again and I went back to work.
I know that ketemine infusions is not possible for everyone considering the lack of doctors doing them but if you can make it happen I really recommend
looking into it. I get up at 2 in the morning and drive 6 hours to get mine and it is sooooooooooooo worth it.
There is a thread on this site that lists a lot of the doctors all over the country that do them. That is how I found my doctor.
Good luck to you and I hope it gets better for you.
May you walk in the eye of your Gods.
Willow
Quote:
Originally Posted by Cake
Hi everyone
Please forgive me for not being on here for over a year or so. I tend to " just keep going" as my life is a rollercoaster but my rsd is now in both arms and my right leg and my meds aren't cutting it anymore, so I'm back to looking at my treatment options and trying to work out what to do next.
I'm on 50mg ms contin, 200mg amitriptyline and 50mg baclofen daily, with endones for bt pain. We've been upping my morphine bit by bit but I'm wondering if we should look at upping my baclofen instead, given that muscle cramps and spasms are my main problems.
I've been on 50mg for over 4 years (since before we lost Olivia) after being on 25mg daily for the previous 9 years.
Is 50mg a standard dose? Are any of you on/have been on more than that, and if so, how much?
I had a rough spell with my kidneys a few months ago so I'm even contemplating a baclofen/morphine pump, but I'm unsure about whether to go down that road. Thats why I'm trying to find out more about baclofen doses first
Any feedback on this would be great, thanks guys!
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