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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   New meds to try (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/218577-meds-try.html)

swimtime 04-08-2015 09:52 PM

New meds to try
 
We had a pain management dr. appointment today for my son. He's happy with his progress, although it's slower than anyone would like to see, but he said it can take 8-12 months to recover from this. The redness is so much better, in fact mostly gone, which I think means the circulation is improving too.

Feeling so thankful and relieved right now. I keep crying in spurts throughout the day. Still letting the relief settle in. We're going to try lidocaine patches starting tomorrow morning, and the doctor's office is going to try to get the insurance to also cover lyrica. Hopefully he'll tolerate the side effects without a problem, and can progress faster through pt.

Is Lyrica usually well tolerated? He's been really sensitive to side effects of other drugs. Pain management dr. feels the pain may be due to a sensitivity to the hardware itself, so maybe eventually it will be taken out. We'll see.

Littlepaw 04-09-2015 03:30 PM

So glad to hear the good news. It sounds like the doctor feels your son is making good progress. So let's see, redness is pretty much gone and no shooting pains and the kid is having fun in the pool...I think he's gonna pull out of this yet!

I haven't taken lyrica but did take neurontin. It was helpful for nerve pain. For me the side effects in that med class were brain fog, depressed mood and water gain of about five pounds which incidentally shows up a lot in the ankles for people on those kinds of meds. Taking meds at bedtime helps with grogginess. Depressed mood is not terribly common but is important to watch for. I believe lyrica requires a loading period so you may not see results right away, it can also need to be tapered off of slowly to avoid a lot of nausea and unpleasantness. Hopefully this one will work for him, if not keep trying.

Hardware is often a problem! I hurt just thinking about that. I am sure with all the growth spurts coming they will want to get that out of there when things settle and it's indicated. Be sure they take their time when going back in! It doesn't take a lot of time investment to find, mark and protect cutaneous nerves during ortho procedures but it can sure make a HUGE difference for the patient and for CRPS.

Sending my best! Yeah Mom! Yeah Boy! Have a relief cry for me too, so happy for you both.
Littlepaw :hug:

Russell 04-09-2015 09:26 PM

Hi Swim,
I'm glad to read good news too.
All I can say about Lyrica is that the side effects that I experienced was being in a boggy fog state so my neurologist switched me to Gabapentine which works wonders for my pain as did Lyrica with a little less fog.
But because of my cocktail mix I still reside in a foggy state a lot. But the trade off to me is wort it.
As for hardware problems I can relate. The sun warms it to a very uncomfortable level as does when it gets cold. Bone pain to the extreme!
I think about having some taken out but there's the high possibility of making my CRPS worse. Although how much more worse can it get!
Keep up the fight and send some more good news...

velkyn 04-09-2015 09:33 PM

I know people with nerve pain like fibromyalgia who have no problems with lyrica and swear its the only reason they can get out of bed.

I tried lyrica several months ago. At first I have brain fog, depression, and fatigue and after about 2-3 weeks, my husband and I realized I was having a lot of difficulty remembering words. I mean many words.. It was really strange and I had to stop taking. It did not help with my pain but perhaps I hadn't taken it long enough or at a high enough dose.


I am sensitive to any medications that mess with brain function chemicals. Cymbalta, chantix, anti depressants... They all cause unusual ( to me ) reactions. I'm really sensitive.

Your son may have great results and none of the weird side effects. Imo, anything is worth a try. Good luck with it, just be aware of anything out of the ordinary


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