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 03-21-2013, 04:33 PM #41
CRPSsongbird CRPSsongbird is offline
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Default New medications seems to be working well.

So right now this is what seems to be keeping the loins share of the pain down.

Valium 2mg 1 in morning 1 before bed to help with muscle tension
Oxycodone 10mg 2-4tabs a day depending on pain level that day
Amitrityline 50mg 1 tab before bed mainly to help with sleep


Theses seem to be helping at lot! I think the main problem before was that the tramadol wasn't really helping the daily levels of pain as much as I needed to that my CRPS was more likely to go into a more major flare. Probably from the stress and muscle tension. I am sooo relieved to have some significant pain relief lol! I still take it easy and try not to over do it, meaning it still takes me and hour to do dishes or 4 hours to fold laundry. At least I have devised as way to get some of the minor housework done with out triggering a flare!!
Lets hope my current balance stays!!!
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Old 03-21-2013, 05:25 PM #42
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Originally Posted by Brambledog View Post
Thanks for this, I spoke to my physio today who said that GPs aren't keen on them being used daily for pain relief because pills are so much cheaper...so if I can keep them for when pain is bad, at least I have something that might work. I've not tried one yet - I'm kind of scared in case they really do work on the pain, and then I'll just want to use them all the time....which means it'll be time for another fight with the nhs. Sigh.

Thanks Songbird

Bram.
I would at least try them so you know whether they are effective or not. I find the adhesive really irritates my skin. I can't keep them on for long. So my PMD has me trying a compound cream with Lidocaine, Ketamin and a couple other things.
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Old 03-23-2013, 10:33 PM #43
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I used to mummify myself in those patches, alternating with flexor patches to relax stiff joints. They're wonderful! Got allergic to lidocaine, so cannot use them now
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Old 03-23-2013, 10:44 PM #44
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I used to mummify myself in those patches, alternating with flexor patches to relax stiff joints. They're wonderful! Got allergic to lidocaine, so cannot use them now
That's too bad NJ!

For those new to Lidoderm Patches, the maximum dosages per day, is 3 patches on for 12 hours, in a 24 hour period.

http://www.lidoderm.com/pdf/lidoderm_pack_insert.pdf
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Old 03-24-2013, 08:47 PM #45
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Yup I forgot I use those too lol! But I'm out and cant afford more right now
I get the afford issue. It's crazy.

I use four Lidoderm patches a day to wrap my ankles, and they work wonders. But it is really outrageous what they cost. Through my insurance the four boxes I get each month are $30; without insurance I'd have to fork up $1040 to my CVS. Seriously.

I don't know if this has been mentioned, but I've started on Nucynta, which leaves me lease devastated than Vicodin. 100 mg at a time puts a dent into my pain, and leaves maybe 50% functioning.
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Old 03-24-2013, 09:45 PM #46
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I get the afford issue. It's crazy.

I use four Lidoderm patches a day to wrap my ankles, and they work wonders. But it is really outrageous what they cost. Through my insurance the four boxes I get each month are $30; without insurance I'd have to fork up $1040 to my CVS. Seriously.

I don't know if this has been mentioned, but I've started on Nucynta, which leaves me lease devastated than Vicodin. 100 mg at a time puts a dent into my pain, and leaves maybe 50% functioning.
Nucynta is available in extended release formula as well.
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Old 03-25-2013, 10:16 AM #47
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Quote:
Originally Posted by CRPSsongbird View Post
So right now this is what seems to be keeping the loins share of the pain down.

Valium 2mg 1 in morning 1 before bed to help with muscle tension
Oxycodone 10mg 2-4tabs a day depending on pain level that day
Amitrityline 50mg 1 tab before bed mainly to help with sleep


Theses seem to be helping at lot! I think the main problem before was that the tramadol wasn't really helping the daily levels of pain as much as I needed to that my CRPS was more likely to go into a more major flare. Probably from the stress and muscle tension. I am sooo relieved to have some significant pain relief lol! I still take it easy and try not to over do it, meaning it still takes me and hour to do dishes or 4 hours to fold laundry. At least I have devised as way to get some of the minor housework done with out triggering a flare!!
Lets hope my current balance stays!!!
I'm glad that you have found something that works for you. It's also good that you are adjusting your daily activities and doing them differently so as not to overdo it. That, I think, can be one of the hardest things to adjust to. Finding different ways of accomplishing the same tasks can be a difficult and frustrating process but will be much better for you in the long run.
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Old 03-25-2013, 12:06 PM #48
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After 30 years of this, by far, methadone works the best for me, and also by far, the least expensive! Talk to your doctor. I also use Cymbalta, muscle relaxer, and some other specialized things like lidocaiine patches.

Good luck to you!


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Old 05-31-2013, 07:24 PM #49
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Quote:
Originally Posted by fbodgrl View Post
Currently I am taking
Tegretol 200mg 2x a day
Cymbalta 120 mg 1x
Norflex 100 mg 2x ( during day)
Flexeril 20 mg 1x (at bed time)
Lortab 10/500 mg 1-2 pills every 4-6 hrs

As far as "pain relievers". I started with regular strength Vicodin when I originally had my nerve entrapment that started all this ( prior to my surgeries or RSD). Then I went to Vicodin ES. I have been on the Lortab on and off for a few years and on it daily for basically 1 1/2 yrs. I'm trying to work with my PMD to change that around as I am taking so much daily I'm concerned about my liver. This is becoming an uphill battle.

I've tried Tylenol 3 and Percocet 5/325. Neither were helpful so it was back to the Lortab.

I've taken
Lyrica- horrible weight gain
Dibenzyline-worked great for night sweats and shocking pain
Did Tegretol break your cycle of pain? I had RSD of the left foot 25 years ago. I spent 10 years trying PT, tens, high-volt, desentization therapy, nerves blocks, and dozens of the usual pain medications. Finally, I found a neuro who put me on Tegretol, the theory was that it would break the constant nerve firing like it does for epileptics seisures. He eases the dose up, to the point I was barely functional. I was extremely sleepy and could barely remember the names of people I knew very well. But after many months on the drug, these eased me off of it and the cycle of pain was gone. My limb has dystrophied. I had little sensation or motility but the pain was gone. And it remained that way for nearly 15 years. I have had some recent break through pain, reeally minor compared to where I was 25 years ago. I feel that neuro saved my life. Tegretol worked so well for me. I am often surprised that I do not see it tried more. Maybe I was just lucky.
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Old 05-31-2013, 09:55 PM #50
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I was on a higher dose than I am right now. At the 200mg twice a day I was sleepy and having a lot of memory problems (I call them my stupid pills, cause I forget words or thoughts mid sentence) Now I'm back to 100mg twice a day. At the lower dose I still have some memory/thought problems, but not like it was.

It definitely helps with the pain. Mostly the deep aching pain. I went a few days without this month and I could really tell the difference. He will probably be bumping my dose back up next visit.

I've actually been surprised I haven't seen it mentioned often. Especially for people wanting to reduce their intake of "pain" medication.
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