[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!

[Kitty]

I don't have RSD but I do have MS and take Baclofen regularly.

It helps with the spasticity I get in my legs (left leg usually). I take 10 mg tablets about every 4-5 hours.

I take them even if I don't feel I need them at that exact moment because keeping an even level of the med in my system helps keep the "attacks" at a minimum.

I have 20 mg tablets but it seems that's too much for me to take all at once. The sedation from it is severe at that dosage for me. So I split the pills and take 10 mg at a time and that seems to work for me.

I've had to play with the dosage levels some in order to get the right fit for me. Right now it works well so I'm just sticking with what works.

I've never tried another type of med so I'm really not sure what's available out there. I really should investigate because I know that down the road I'll probably need something stronger.

Good luck to you. Oh, and Baclofen is relatively inexpensive so that helps a lot, too.

[Djhasty]

Hello Cake. I have a Baclofen pump that feeds the med directly/constantly into my spine. Dosage via the pump is at 210.8. It does help. Before the pump I was taking 70mg per day total. Now with the pump I still occasionally have to take 10-20 mg more orally for breakout cramps. My spasticity is pretty severe. I am also on Tizanidine for spasticity. I'm on Fentanyl patch and oxicodone for pain.

[alaska49]

I take baclofen and take 20mg every 4 hours. Have you tried not just taking baclofen for spasms and cramps, I take also either valium or ativan depending on the kind of spasms and cramps I am having, I take 10 mg of either and if needed can take 30mg.

[89danboy]

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!

hello,sorry that it's spreading on you,are you in 50 mgs of contin totall or is that 2xs aday,reguardless If you have been on it for awhile it's not enough.bye what you are saying it's not.the new MS Contin has been modified so abusers can't abouse them ,bye crushing exc... They are very week from the original version,some patience .for me I've had rsd for 7 years,I've tried them all,and it's a fight to try and get what your body needs from tge drs.even having the #1 pain disease in the world.what works for me now, is methadone 120 mgs aday that is what I'm up to, started with 40.i also take oxycodone 30mgs xs 4 aday .remeron for stomache 40 mgs ,I do nasal ketamine once a week a month 40 mgs xs 3 .i have full body rsd I'm stuck on the couch or bed 23 hrs aday ,I have better days.withoyt medicine I don't have any life ,it not only helps the pain.it gives you energy and lifts your spirit to do more. IMO .i was off my pain meds for a year .i was bed riddin.i had my gull bladder removed,the dr gave me perc 10s for the pain for 5 days,during that time I had a much better life.so I went back on and stay on,don't care what anybody thinks ,I it's your life ,I intend to live it to the fullest possible, which isn't much ,but I'm blessed,so many of us rsd survivers don't get proper medical.actually what I'm on now isn't enough for me,but I'm dealing with it for now.methadone is great for long term pain & your body can go days without craving any pain meds,I take oxy for break thru pain,that is something you need ,you have the twelve hour MS Contin. , but need a fast acting for break thru .hope you get better and get what meds are rite for you ,always here for any questions danny

[Willow_Makk]

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

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!