The last few days have been much worse pain for our son. I thought it was due to changes in weather (dropping temps, thunderstorms, and heavy rains). I thought it would improve today since the weather's much better, but he's pretty much back to his pain level before starting the Lyrica. Can Lyrica just stopped working for some people? I don't know if the CRPS is getting worse, or if it's a flare/spread (he had an intense, stabbing, shooting pain in his left heel for several minutes last week, and he hasn't been the same since.)

I'm taking him back to ortho tomorrow to discuss removing hardware. He has a history of autoimmune issues and it's possible he may have an allergy to the metal. (There's a long plate and lots of screws.) But I'm scared for him to have surgery again with all it's risks for CRPS.

I'm all cried out for now, but it's been an awful few days. This thing is such a monster. He's losing the progress he's worked so hard to gain b/c he can't tolerate as much weight bearing anymore. Sorry to be so negative, I'm not sure what to do next for him.

Hi swimtime,
I'm just giving you food for thought here. I tried Lyrica as part of my cocktail but never received good results so my neurologist switched me to Gabapentin and it worked a whole lot better. She tells me some people's system reacts more to Gab then Lyrica. It did in my case anyway.
Good luck tomorrow...

The weather could have set off a flare. Warm baths with Epsom salts might help.

I am sorry to hear your son is having more pain again. I am handing you a Kleenex now and sending a hug .

Having a discussion about getting the hardware out sounds reasonable. That could very well be part of the problem. There are some studies out there on hardware removal and in the majority of cases patients obtained pain relief and said they would do the removal surgery again. I am sure with a growing boy hardware presents all kinds of other challenges as well.

When you talk to the surgeon I would ask about the approach to potentially damaged nerves. If they find that a sensory or cutaneous nerve was damaged or is stuck in hardware or scar what will they do about it? Standard plastics nerve procedure is to crush and cauterize the end if a nerve cannot be salvaged. This prevents neuroma formation. If there is scar on a nerve will the ortho have the magnification loops and micro tools necessary to address that? Do they ever work with a plastic surgeon if they don't have the tools or skills? Places that do trauma or lower extremity restoration often do procedures with multiple disciplines. This may be overkill but I know you want the best possible outcome and preparation for whatever may be found that could be contributing. Hopefully it is just the dang metal implant!

Pre-op, 900 mg gabapentin is the new recommendation to reduce chance of chronic pain, post-op the antibiotic minocycline attenuated glia activation which reduces chance of CRPS. Regional anesthesia is helpful and if Pm or ortho recommends it they could give him a dab of ketamine during procedure to keep that pain memory from forming.

Of course there are risks, of course it is scarey and you want him as stable as possible before proceeding but there is also the chance that this could bring healing and pain relief. Either way we will be here with prayers and support.

Sending more hugs, Littlepaw

I'm still learning about this but I have more pain when it gets hot and it hurts further up my arm. If I get a sunburn it's horrid. And ac in the car is not my friend either. But this is just my experience. These guys have great info for you! Sending hugs! I can't imagine if one of my kids had this

Today is much better, flare seems to have settled back down. Orthopedic doctor is pretty pleased with his progress. She wants to wait a few months before considering removing hardware, to give the nerves more time to settle down and prevent risk of a setback. Since his pain is usually pretty localized to the extensor tendons on top of his foot, she feels the screws in the front of his ankle may be irritating the tendons as he steps and they stretch over the screws.

Glad to hear the news. That Sounds like a good plan. Get everything as calm as possible. It makes sense on those tendons. There is so much movement to accommodate and of course those nerves run right through there too. If the tendons aren't happy I am sure they aren't either!

Keep up the good work!

I have increased pain and spasms with weather changes. It is in part to all the surgeries I have had and I think the rsd makes it worse. Since the arthritis is an inflamitory response I think the immune system kicks off a response and the rsd flares up. Swollen joints and swelling from rsd make things just miserable. I kn