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 10-12-2018, 10:56 PM #11
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Personally I prefer a longer acting medication, if you can get ahead of pain it is more effective than chasing it all day. I know that prescribing opioids is now a big deal and many docs are very conservative about it.
My first pain doc went to Methadone because it works on different receptors in the brain, which are thought to be the ones involved in CRPS thus making it more effective. It is also designed to not give the "high" (it is the medication given to help heroin addicts get off heroin) so it makes it technically less addictive.
My second wanted me on buprenorphine (the Butrans patch) because he felt it was better/safer for my body long term (do less damage) than Methadone. Again, it is a suboxone medication, so designed not to give the "high."
Norco and Percocet were completely ineffective for me.
The med that helped most with the burning was gabapentin (the base that Lyrica came from) in higher doses every day. I can't speak to a medication regimen, I'm not a doctor. But if your pain level is still high, there is certainly room to increase all of your med (I don't know about the Celebrex) quite a bit. (ok. in my opinion you are undermedicated).

The other thing would be a good PT program. Quality PT makes a huge difference. Desensitization, gentle stretching, etc.
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Old 10-15-2018, 07:23 AM #12
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Thanks!! My pain management doctor doesn't seem to hesitate to prescribe new meds, both narcotic and otherwise. I have a follow up with her tomorrow.

So far I'm finding that PT is not helping. I am doing things they taught me every day but when I go to aqua therapy it just flares everything up for days. I find I'm much better doing a regimen of stretching, walking 4 miles and desensitization therapy on my own each day than I am doing the aqua therapy or going to sessions. I'm also going to gentle yoga a couple times a week. It's all painful, don't get me wrong, but I'm determined to hold on to my mobility as long as possible. When things flare up I back off for a few days.

Today's a bad day but I was on my feet most of yesterday which is almost always a precursor to a bad day. I am still working to find that happy medium of doing enough without doing too much especially on the weekend when my child is home and I'm running all over the place.
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Old 10-16-2018, 10:46 AM #13
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Saw PM today and she's upping my doses all the way around, including frequencies. Hopefully it will be helpful. She also mentioned I may be a candidate for a spinal cord stimulator but I'm hesitant to go that route. It freaks me out to have something implanted in my spine honestly and I'm hesitant to do anything that involves more invasive procedures since all of this originated from a surgery. I'm also going to a neurologist to do some nerve conduction studies to see if they can identify which nerves are the most impacted and maybe do a sympathetic nerve block, but same concerns from me.

Not really sure what the right answers are and the lack of concrete information makes it hard for me to make decisions. Anyone else suffer from analysis paralysis? Any thoughts or insights on the above options? I'm hoping med increases will be sufficient and it won't come to a SCS or block.
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Old 10-17-2018, 12:24 PM #14
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Quote:
Originally Posted by annabanana123 View Post
Saw PM today and she's upping my doses all the way around, including frequencies. Hopefully it will be helpful. She also mentioned I may be a candidate for a spinal cord stimulator but I'm hesitant to go that route. It freaks me out to have something implanted in my spine honestly and I'm hesitant to do anything that involves more invasive procedures since all of this originated from a surgery. I'm also going to a neurologist to do some nerve conduction studies to see if they can identify which nerves are the most impacted and maybe do a sympathetic nerve block, but same concerns from me.

Not really sure what the right answers are and the lack of concrete information makes it hard for me to make decisions. Anyone else suffer from analysis paralysis? Any thoughts or insights on the above options? I'm hoping med increases will be sufficient and it won't come to a SCS or block.
Anna, there is generally no lack of paralysis by analysis when it comes to CRPS! I did so much research on it when I first contracted it that I had to finally just stop for a while and went back to it at a more moderate pace later. So I get ya there!

I think slow and steady is the right pace for you which I see you are doing. The meds increase is for sure the first thing to try. Maybe if you increase the Lyrica you can get off of the hydrocodone, something I would want to eventually consider as IMHO, it's not a good CRPS long term med.

The stimulator is something to consider way, way down the line. Yes it works for some but certainly not for all. And there is even a chance of spread with the implantation of the device. So lots to think about there. I did try nerve blocks but they didn't help me at all. But they help some!

Best of luck to you, I really like your thought process so far. Stay the course and be sure to keep us updated; we're all in this together!
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Old 10-17-2018, 01:06 PM #15
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That's my thinking and my hope! I definitely do not want to be on opiates long term if there's a viable alternative. With the spread into my arm the hardest part is honestly washing and drying my hands! I know that sounds crazy but its excruciatingly painful to do so this week. I'm only on the first day of increased dose and it seems to be helping a lot, thank the lord!

For the SCS I really am not open to it at this time but will take info and gather research in case I need it down the road. I would prefer to never have another surgery, honestly.
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Old 10-23-2018, 03:21 AM #16
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Quote:
Originally Posted by annabanana123 View Post
Saw PM today and she's upping my doses all the way around, including frequencies. Hopefully it will be helpful. She also mentioned I may be a candidate for a spinal cord stimulator but I'm hesitant to go that route. It freaks me out to have something implanted in my spine honestly and I'm hesitant to do anything that involves more invasive procedures since all of this originated from a surgery. I'm also going to a neurologist to do some nerve conduction studies to see if they can identify which nerves are the most impacted and maybe do a sympathetic nerve block, but same concerns from me.

Not really sure what the right answers are and the lack of concrete information makes it hard for me to make decisions. Anyone else suffer from analysis paralysis? Any thoughts or insights on the above options? I'm hoping med increases will be sufficient and it won't come to a SCS or block.
I also didn't want to go that route, and I made it abundantly clear to my pain doctor that I didn't want an implant and I didn't want blocks - so we just stuck to medication (pain patches + Neurontin mainly).

It is hard to make decisions around your health, but your doctor has to be willing to work with you on this. Voice your concerns to her/him clearly.

And it is totally understandable that you don't want more surgery if it all stemmed from surgery.

Good luck to you!
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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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