Oh my, rough, rough week. It started out a little more optimistically, but by late in the week, I was a mess and the weekend was tough. So far, each subsequent day has been a little worse in spite of backing off of things again this week, but staying moving with what has been "safe" activity. Hips are just not happy with much. Back is not doing much better. Shoulders are hanging in there! Yay for something!
This week started out some better, but then by end of the week I was miserable again and pretty sure the flare was in fact changing into a crash. I heard back from surgeon's office--but hard for them to know without seeing me. The weekend was not just rest days, but full on survival mode. Saturday, I did some exercises, somehow got two loads of laundry done, but then rested. Sunday was entirely rest. Every time I got up, I would start to feel as if I was going to pass out. So, lots of water, lots of salt (what cardiologist told me to do years ago when worked up for this issue), found my compression socks from surgery, managed to get them on even op foot without help, compression shorts, even pulled a pair of leggings over the top of all of that for extra layer of compression. It seemed to help some, so did that all weekend. By Monday morning, my body hated compression and when things were getting more sore again, tried the compression shorts to see if it would help but it made it much worse. So, whatever it was helping, was no longer viewed as helpful. Called surgeon's office again as miserable and sort of scared. Knew they had a busy afternoon so did not expect to hear back. After a miserable day, went to the gym--elliptical and swimming can still get me pain-free in both hips even when nothing else can. Well, after swimming, saw I'd missed a call from surgeon's office. Oops.
We took an easier week with respect to PT, chiropractor appointments, and with respect to rehab. Still keeping some rehab going and keeping up with cardio as tolerated. So far, both elliptical and swimming can get me pain-free, and I think this is independent of just exercise effect. I think elliptical is movement of the joint, swimming, the effect of water. Also, cold pool is better than warm pool, but both help. Hot tub helps, but have to be super careful as heat intolerance issues are worse than normal.
Called primary care physician and they got me in same day, prescribed oral steroid burst/taper to break the flare, referred to rheumatologist. The rheumatologist had a cancellation for the next morning! But, they needed me to complete ten pages of intake forms, and needed copy of doctor's note. I explained the more helpful note was probably my diagnosis with Ehlers-Danlos Syndrome from last spring and I had a copy of the complete note. They had me come in that afternoon in advance to pick up intake forms and bring in notes to be copied. They told me they knew it was me just watching how I walked in....so, gait is getting bad enough that others can tell. (I am going to wait to write about the appt until next week, since it officially took place during week 12. Besides, I need time to process, and figure out how to frame things.....)
11 weeks post op left hip last year. I know I was in a crash then, and this is part of what is making me think the current flare, might actually be be a crash in process. I made it much longer without crashing than I have ever done before without prednisone. Week 11 this time ended with prescription for prednisone burst/taper. Hoping and praying it works as well as it has in the past.
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