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 01-09-2014, 09:47 PM #1
Ozzieace Ozzieace is offline
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Default Is this the norm?

my doctors either ups my dosage or changes it all together at each doctors visit. He will prescribe me something that takes a few weeks to work, and then it actually does seem to work, but only to suddenly be worse than before i started taking the meds.

My visits are three months apart, so i find myself by 6 weeks out counting the days to the next appointment, because nothing seems to work for more than a few weeks at a time....its so frustrating.

The last meds he had me on worked great after taking it for two weeks....i had little to no pain at all, and then all of a sudden, its like someone cut my arm off.
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Old 01-10-2014, 08:58 AM #2
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I guess it depends on what meds you are taking as far as upping the dosage.

Based on what you are saying though...if you go in every time and the meds have stopped working then the doc has two choices...up the dosage or change the med...and it sounds like that is what is happening.

3 months between appointments seems like a long time when your pain isn't under control yet. I would discuss this with your doctor and see if you can get appointments closer together to monitor your progress so that you don't have to wait so long to be seen. If you can't...then maybe it's time to see another doctor? Only you can make that choice but the current system seems to not be working.

Unfortunately is can take a long time to find a combo of meds that work well for you...and we all respond to different meds. Unfortunately...I never got a ton of relief from any of the various meds I was on...so I reached a point where I decided to go off all of them because I felt that it wasn't worth the side effects and all the damage those things would be doing to my body over the long term because the pain just wasn't being reduced enough. I hope you are able to find a good combo that helps you pain.

Early on...there was a combo that did a pretty decent job for me and that was Lyrica, Tramadol, Meloxicam, and Doxepin. I have noticed that generally people get the most relief when they are on a combination of pain meds, antidepressants (used to treat nerve pain), and an anti inflammatory. I also had Lidoderm patches to use that those were important at that time...really helped to take the edge off the pain.

I know there are lots of other people with different combos of meds. If you tell us what you're on and what feels like it's helping them maybe others can offer some advice or insight on how those particular meds worked for them or what they take instead.

Good luck and take care.
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Old 01-10-2014, 04:17 PM #3
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Quote:
Originally Posted by Ozzieace View Post
my doctors either ups my dosage or changes it all together at each doctors visit. He will prescribe me something that takes a few weeks to work, and then it actually does seem to work, but only to suddenly be worse than before i started taking the meds.

My visits are three months apart, so i find myself by 6 weeks out counting the days to the next appointment, because nothing seems to work for more than a few weeks at a time....its so frustrating.

The last meds he had me on worked great after taking it for two weeks....i had little to no pain at all, and then all of a sudden, its like someone cut my arm off.
I've never had meds work for a period of time then not work. For me they either work or they don't. Maybe you should make monthly appts or at least 6-8 weeks just to keep him updated. You don't want to suffer while waiting for the next appt.
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RSD since 8/2005
Originally in left and right foot
Spread in 2006 and Jan 2014
Both legs, arms.
Chronic pain going back to 1992

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Old 01-10-2014, 11:37 PM #4
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Thanks for the info...three months in between appointments is almost torture, ive never been one to go doctor for minor things, but when your in this much pain, its no fun.

I have asked him about the three month and he just says it takes a while sometimes to see what meds will work and they might take a month or to get fully in my system.

I was taking gabentin, but I HATED the side effects, so I took myself off of that.
Now I am on cloldine and amitriptyline (100mg) , and also a very expensive compound cream....my co pay was gonna be $324 however the nicest lady at the chemical company (because you apparently cant buy it from a pharmacy) told me about a government program that took it down to $15...holy cow!!

I had s perscription for lyrica, but never got it filled becasue even with my co pay it was expensive, I might ask the doctor to give it to me again and I will ask the chemical company directly maybe I can use the same program to lower the cost.

I havent been put on any pain killers, I havent asked before, because I dont want to not be me, however when I have major pain sometimes it would be nice to have somethign to make it stop.
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