Hi fellow CFS spoonies! I’ve had CFS for about 11 years, have done every treatment out there (and I live in L.A., so there’s everything), and stiillllll have CFS. And now I have a new hip too! I had struggled with rheumatoid arthritis pain for ages, and finally the x-rays showed the bone knob looked more like a gnarled tree, growing off in all directions. So, surgery time. I ALREADY had hypotension and was pretty much housebound. I needed a wheelchair both for hip pain and weakness/exhaustion. But it was painful to sit, lay, stand, anything, and I felt I really had to do the surgery. I insisted on the frontal approach and discussed CFS-approved anaesthetics with the Dr.s, who were all accommodating.
It’s been 4 weeks now, and the first 3 were pretty bad. 2 weeks in I had an allergic reaction (my first anaphylactic one) maybe to the pain meds, which is fine, I didn’t need them anymore, but scary as I was in the E.R. twice, and I don’t think that helped my recovery any. I’ve mostly been chill and patient with it all, I knew my recovery would be slower than most. The great news is that my hip feels so much better. There is very very little pain, even from the incision. The brain fog/depression/lack of motivation from the first few weeks is lifting. For me, Midodrine (to raise blood pressure) and Bystolic (beta blocker for my racing heartbeat) help a lot, and I was iffy taking them post surgery then stopped after the allergic reaction for a bit. So I credit them for some of my better days, as well as maybe general healing. I’m trying to eat healthy, but am off ALL my kajillion supplements, as they make u stop all that before surgery and I just haven’t restarted. I do monitor my b.p. and h.r. and both are about the same level of f’ed up as before surgery.
Some surprises: numbness of a muscle or 2 still recovering and maybe a nerve? (Feels like my skin is swollen/frozen a bit on that foot & lower leg). My sense of taste was broken, that’s coming back slowly, which turns out to be an anaesthesia side effect. It’s much more taxing than anticipated on my family (2 teens at home, mom visits nearly daily) - even tho I can walk to the kitchen once or twice a day it’s hard to carry food with a walker, I still end up asking them to bring me stuff fairly often, and obviously getting the mail, housework etc is out still. My mom had wanted me to live in a recovery place for a couple weeks after surgery and I was adamant that I wanted to be home, but in retrospect it might have been better. I was so blah and weak I just slept and killed time on my tablet anyways, and someone would have been feeding me and getting my meds in me. (I was in the hospital 2 nights post-surgery).
So that’s my story. I’m sharing it because I wished there was more here when I was debating surgery. Overall, I think maybe I’ve lost a little (like 5%) energy/functioning, but it’s worth it to be free of the nearly constant pain.
