So my son is working through pt in the gym. He did great with pool therapy and they felt he was ready to move to the gym. He does about 5-6 minutes on the bike, leg kicks, stretches with bands, and maybe one or two other exercises that I can't remember right now. They also want him to do the treadmill for a few minutes, but he hasn't been able to manage that yet by the time he gets through the other exercises. He's pretty much done in from the pain at that point. I'm thinking about pulling him out of formal pt for now and just taking him to the local YMCA pool nearly every day (we already go a couple times a week when we can). We went today and he walked, swam and played for a good three hours. My gut instinct tells me this is way more beneficial than 45 minutes in the gym and then needing to recover for two days with minimal activity. The stabbing, shooting pain is gone now (YIPPEE!) but he's having a hard time describing his pain (other than "intense"). I don't know if it's all just muscle pain at this point (he has quite a bit of muscle atrophy in both legs) or if it's still "CRPS" pain. So I guess this rambling message is me looking for advice from those of you with more experience beating back this monster. Is it "safe" to pull him out of formal pt (temporarily) and just let him walk/play/swim in the pool as long as we can each day? (He made up his own exercise - jumping up with his "bad" foot while we play volleyball in the pool).

Also, I worry about how much time he spends with his foot elevated (usually with a heating pad on). I'm not sure if elevating it is great for the circulation issues of CRPS but it seems to relieve the pain. Any advice there?

We go back to the pain management doctor at Children's Hospital Wednesday. Hopefully, they can find a pain med for him that he can tolerate without side effects. We haven't found one yet. Low dose Naproxen apparently isn't available yet, at least not for kids. Bummer.

Thanks for all your support here.

I say go with your gut instinct. CRPS varies so much per individual that it's more crucial than ever to pay attention to it. All the best to you and your son; it sounds like he has great potential for continued recovery.

Hi Swimtime,

So glad the shooting pains are gone! That is tremendous!

I know the PT has been a bit of a struggle for some time. It sounds like there are pros and cons. I believe the discipline of it is positive - measured repetitions, times, increased types of exercise. Also Ensuring optimal and close to normal range of motion, a common deficit with ankle injuries! Is important. However, if you are methodical you can achieve this yourself. Being wiped out for two whole days after doesn't sound so good. Is there anything they do or plan to do that you cannot? If you decide to drop it I would talk with PT first, make sure you aren't burning any bridges with your insurance on restarting later and make sure they send you home with an exercise plan to do on your own.

The bike is a available at the gym, bands can be cut to take home, you can buy a wobble board (I bought an Avenco) and have him do reps front to back and in a circle with the edge to the floor. When ready, He can start standing on just the injured foot to increase balance and ankle stability. Throwing a ball and bouncing it off a wall to yourself while doing this is helpful too. I personally think the treadmill should come last, it is a lot of heel to toe stress. It is easier to manage gait just walking in the neighborhood or on a track. Elliptical can add leg strength and won't stress things as much while still giving ankle motion. IF he tolerates it. Try new things one at a time for only a few minutes at a time, ie: no more than 5 max. That way if there's a flare you know what to pull back on and you limit how bad it is.

The water has many benefits (natural gradient compression) however at cool temperatures it is not always possible to feel something being overtaxed so while jumping or stretching may not feel bad at the time it is always good to be careful.

On elevation, ortho has told me bone repairs take 18 months for complete remodeling. Swelling and aching to some degree is normal during this time. Elevation is helpful. With CRPS the circulation damps down, gets overloaded and can't filter out enough fluid or inflammatory compounds. If elevation helps with this, especially after challenging it then go ahead. So long as he is keeping it down some of each hour so his autonomic system doesn't forget what to do about Gravity it should be okay.

If the kid is having fun at the Y and you can build in the discipline so you have measurable progress I see no harm in trying. Having his full investment in what he's doing will go a long way. On meds, has he tried nortriptyline? My neuro stated he gave it out "like water" for teens with migraine. I now only take 10mg, no goofiness factor at all at that dose and an edge off the pain.

Follow your instincts, you know your cub better than anyone. Sometimes they need someone else to teach them, tutor them, challenge them and sometimes they need the power of Mom.

Take care, I am sending more Healing Love,
Littlepaw

The pool is the only thing that works for me and if its not warm enough I use the kiddy pool its warmer, hot tub too. I suggest using support socks for swelling if he can handle the pressure. It actually helped relieve the pain some when my veins hurt or I have deep aching too. I get the ones with the least compression. I also have some that go all the way up to thighs when walking is difficult from leg pain. Use no ice. I use cold refrigerator packs for swelling or sweating and heat too for spine pain. Fire and ice. Strange disease.

I've pulled him out of formal pt for now. It's just such a yo-yo of inconsistent days - light activity the day before so that he's not overly sore the day of pt, then too sore for much activity for two days after. I'd rather he have some consistency, with certain exercises he can repeat every day and gradually increase. Hopefully he'll tolerate gym pt better in a month or two and can go back and get more benefit from it. In the meantime, we'll keep going to the Y for the pool as often as possible.

WATER therapy seems to always be better!