Just a quick update on physical therapy. Friday was day 3 of PT (doing 3 days a week). A few exercises were easy and I almost wish I had kept my mouth shut about it because what they had me do instead was way too hard. I did it...but it was too much and I have been paying for it. Flare up in my leg to about a 6 and still feeling that a day later. Plus...my hips hurt really bad...Both of them. So I think that last thing was just way too much. The good news is...I don't know that that exercise is anything like anything I will ever have to do in the course of a normal day...dangling my foot off a ledge and doingn forward, sideways, and backwards motions 10 times each. Yeah...no. I'll make sure to tell the therapist all this on Monday. Hopefully the pain is back to baseline by then because with the hip pain I haven't really been able yo do moat of my exercises and I'm pretty religious about doing them so I'm very frustrated to not be (I did try but the hip pain was intense and abnormal so I stopped).

Aside from the PT issues from friday...everything is going well with my treatment. Life with a 3 yr old makes recovery difficult at times...I somehow ended up with a very tiny elbow getting me in the back right on the one incision...that hurt...but no damage done other than a little pain for about 30 minutes (Advil took care of it).

BUT overall I just cannot stress how much this has changed things for me. Still have terrible pain in my upper body and I'm not free and clear in the leg either...but the pain in my leg is just so much less that I feel like I could walk for miles...if it wasn't so cold outside. But I do continue my laps around the dining room table each day even with the hip and flare up pain...albeit perhaps a bit slower these last couple of days...and I am so happy with my progress overall.

Catra,

After my most recent return to aqua PT, which Btw I dearly live and continue to recommend, my right hip acted up, alot! I was doing too much, too fast, including going to the gym on alternate days, unfortunately, despite taking a break, it hasn't stopped hurting. It's gone from acute to chronic, low pain. I have tried heat and limited amounts of ice, but i have not gotten much relief.

I suspect basic, daily activities plus a wonky gait aggravates it. As I learned in the past it may take months for it to settle down, but you are doing the best activity ever, moving. I am going to try floor yoga, in addition to mindful meditation. (It also looks like my CRPS is in my other foot and hands, I think the prescription, compounded LDN is not as effective as the liquid LDN I mixed myself. I started having more flares after I started on the pills.)

The exercises aren't about having you do motions you do in real life, they are about strengthening and stretching muscles and ligaments you haven't been using in years. My hips are a mess from not walking properly from 2.5 years, so I can only imagine what yours are like from a longer time. Hanging your leg off the side of the table is a stretch of the joint. Moving it around is to build strength. A lot of what they have you do feels odd and painful at first. If it causes a flare then you did too much. They should never have you do so much that it flares you. Only up to threshold of a flare, not past. You know that edge when you feel "uh oh, better stop or it WILL flare" That's when you stop. And maybe the next time you can do one more rep than you did the day before. That's how CRPS people progress. We can't do up to tolerance (as much pain as we can handle) cause that reinforces the pain pathways. And causes flares which just slows us down. (And I learned all this from the intensive functional rehab with people who specialize in CRPS, who worked at Stanford).

Oh...I understand all that about physical therapy...I was more talking from the idea that at least it's not something I would do everyday that would regularly cause a flare up or be beyond me...like if it had been step ups or something like that. I know PT is good for me and that it's stretching and conditioning muscles.

I'll also be honest too that when it comes to avoiding flares...I'm not sure how to gauge that right now at PT. Having gone from baseline 8 to baseline 2...I am really struggling to know how far is too far. So it's hard for me to communicate that or even know until after the fact that something was too much. I want to make sure I'm pushing hard enough...but not too hard. I just have to make sure I communicate with my therapist so she knows the next time and maybe we can find a middle ground that still pushes me without flaring.

My pain is still elevated today...at about a 4...so not too bad but this is lasting longer than any other flare since the DRG was put in so I want to proceed with caution. Wearing my lidoderm patches today and will do some heat after PT and hopefully that will help me get through it today without making it worse.

I wish you well on recovery. I think PT for me was too much to handle, and I got worse during the 8 months I was having it... No other treatments were given at the time as they were still not sure what was wrong with me.

Then my orthopedic surgeon said I needed to quit PT as it was much too harsh for me, so he gave me simple exercises to strengthen my muscles back up. Took 2 to 3 years, but the muscles came back. I worked hard on that!

Sometimes easy does it, even if it takes a lot of time.

Pt definitely made me worse 2 years ago and PT can and will do harm to my arm/shoulder. I've tried and it just sends me reeling so I am trying to be really good about communicating any issues at all with my physical therapist. Some days we skip things if my leg or arm pain is flaring (some leg exercises hurt my hands or arms so I skipped those Monday because my arms were at a 9). But for the most part with my pain being a baseline 2 in my leg...I'm doing really well with everything except that one hip exercise (which I haven't repeated because even now almost 2 weeks later my hips still feel bruised and tender). My husband asked if I told them that I was never in shape or stretched BEFORE I developed CRPS...I told him to stop being a smart *****.

At any rate...it's all going pretty well. My shoulder pain is still a mess though. I have two new things coming from Amazon tomorrow that I'm hoping might help me put a little compression on the shoulder while I'm up and about WITHOUT causing extra pain elsewhere. I really need to find a solution for that if I want to return to work because it's great that my LEG can handle so much walking but by about the 60 minute mark of just walking without even using my arm...the shoulder pain gets so bad I start to see stars. Just a tiny bit of compression makes such a difference but so far all the things I've tried help my shoulder but aggravate something else so that the trade off isn't worth it. Doctors and therapists have been NO help in this regard so I have to find something on my own that either works or can be rigged up to help. I'm not giving up on this...I will find something to make it work.

Just popping in with another short update.

PT is going well. I have gradually moved up in difficulty in most of the exercises at therapy...which would suggest that I am getting stronger. I am really happy with my progress on that front. I hope it is enough.

I have also found something that does help my shoulder some. It's a posture corrector that just happens to put pressure on just the right spot and happily doesn't cause much in the way of additional pain (a small increase but heavily outweighed by the relief it gives my shoulder...or more accurately the prevention of the increased pain from it just not being supported. It doesn't help if I try to lift or raise the arm...that is just too much and the pain goes through the roof immediately with those activities...but at least now I can walk/stand for more than an hour without my shoulder screaming at me. I plan to order several more now.

All the pieces are starting to fall into place for me to hopefully return to work soon. I still have a ways to go, will still have to discuss whether to try a second unit for my arms...but for the moment things are looking good.

On another note...I occasionally get an odd sensation in my back where the unit is. Not painful...just uncomfortable/odd. It's hard to describe...almost like a weakness or cramp. It lasts for a day and then I don't feel it for weeks. I felt it yesterday but today I feel totally fine so I really have no idea what it could be but since it's not painful I'm not very worried about. I'll mention it to the dr next week.