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Scheherazade in Blue Jeans
freelance alchemist
Update on my body! 
20th-Mar-2014 09:07 am
Everything hurts/Doesn't work
There've been scattershot updates everywhere, but here's a comprehensive one.

This is the year I'm finally focusing on dealing with underlying chronic conditions. I have acute things so often that stuff like "my hands don't work well" and "I haven't had a pain-free day in eight years" kinda get shoved to the side while we deal with pneumonias and ankle sprains. I'm doing this because dammit it's about time, because now that I'm not constantly on call for someone I have time, because I need to have my body stuff as well-managed as possible because being a foster parent means I need as few Lost Days as possible, and because I finally have a proactive doctor.

Having a proactive doctor has triggered a lot of stuff! (Not bad-triggered.) I went to an orthopedist, who referred me to physical therapy.

And we're developing some working theories.

I don't have a diagnosis yet; we're waiting on prior authorization for that chromosomal microarray. But it looks like several of my problems stem from hypermobility. My pelvis is all over the place. Seriously. On Friday, my PT had to really aggressively shove it back into place, resulting in fucking awful pain Friday night and much of Saturday - but yesterday (I only get one PT session this week due to Monday's travel), it was still in place! We're very focused on my pelvis and sacroiliac (which also wanders) in PT right now, because when my pelvis is rotated like that, it screws up my back and leg muscles something fierce, and then I get the domino effect.

We have no idea how long my pelvis had been rotated. Best guess is a long time.

My muscle weakness doesn't help; that's common in people with hypermobility. I stand with my knees locked backwards-ish, so my thigh muscles have not been working.

(Mom: "But you walk so much!"
Me: "That's why I have great calves."
Mom: "Oh. That's why I still have calves.")

So the regimen I'm on from my physical therapist = exercises to strengthen the muscles around my pelvis, so it's less likely to shift out of true. Which seem to be working okay right now! They're hard as hell, though. PT is evil. >.> After we're confident that I'm proceeding well with that, we'll move on to the rest of my body, but seeing that the pelvis is the biggest thing that can screw everything up, it comes first.

Meanwhile, back at my primary care doctor (the geneticist is now my PCP!), we met on Tuesday about my pain. Seeing as the PT is working on the hypermobility stuff, he's focusing on my spine. He thinks that there's more we can do to help with my herniated disc, nonsurgically. Next time I see my orthopod, I'm to ask for a referral to a spine center; he recommended one, but would bow to the orthopod's expertise. Also recommended an additional orthopod who focuses primarily on the pelvis, which is apparently not a popular concentration.

For now, he wants me to take Aleve twice a day to see about reducing inflammation, to use a heating pad on my back for half an hour before bed every night whether I feel like I need to or now, and to do Moar Exercises.

He also thinks that the insomnia is related to the pain. They did come on around the same time. His target is to get me where I can phase out the Flexeril, but it would obviously be a super incredible bonus if I no longer needed Lunesta. And this theory makes sense - I mean, the first time I noticed my femur popping out of its socket, it was when I woke myself up stretching, which is my body's unconscious attempt to alleviate muscle pain. Yes, I have a racing mind, but if the pain's contributing...

Also, thanks to money Mom sent from the sale of some of my late grandmother's stocks, I was able to make my necessary dentist appointment. (They require pay in advance, since I'll be heavily sedated the day of.) So that is finally getting taken care of.

It's expensive; the PT is $50 a week, the orthotics were $250, et cetera. It's grueling - all the exercises that tax parts of my body unused to work, the twice-weekly trips to PT, the big changes in my schedule, having to constantly change how I sit, how I stand. But my doctor believes that we can restore some functionality and have me in less pain, and I'll fight for that.

For the first time in a while, I have the opportunity to be proactive about this, and I'm glad I'm taking it.
20th-Mar-2014 01:19 pm (UTC)
Oof, hypermobility of the pelvis! That'll do it. I have hypermobility in my knees and elbows, and possibly elsewhere. I know it contributes to my pain, and possibly triggered the fibromyalgia.
20th-Mar-2014 01:23 pm (UTC)
Have you looked into anything like Alexander Technique or Feldenkrais Method? They're ways of improving kinesthesia so that the baseline coordination ( pelvis alignment, for example) gets better.
20th-Mar-2014 01:48 pm (UTC)
I was about to suggest that -- my high school friend Josh Schreiber teaches Feldnkrais, so I wouldn't mind throwing a client his way, if it would be useful.
20th-Mar-2014 01:53 pm (UTC)
Thanks to my mom's constant admonition to sit up straight, I tensed my low back muscles and had basically no core strength. Which contributed to a lot of upper back pain and shoulder problems. Eventually I made it to PT, and over about 2 years, we got my low back released, abs strengthened, and also corrected my walking posture (I overcompensated with my quads, so I had no inner thigh strength). My pain was never as bad as yours, but the PT definitely made a difference (also with my migraines).

Yeah, it's a huge pain in the ass to go to PT, do the exercises, and think constantly about "am I sitting right? am I standing right? am I arching my low back instead of tucking?" But it's totally worth it.
20th-Mar-2014 02:07 pm (UTC)
PT is evil, but useful. I am gene-geekily looking forward to the microarray study.
20th-Mar-2014 05:57 pm (UTC)
PT = Professional Torturer.
21st-Mar-2014 12:40 am (UTC)
My wife grew up going to physio. Still calls them physioterrorists :)
20th-Mar-2014 09:05 pm (UTC)
I hope you see steady improvement.
20th-Mar-2014 09:27 pm (UTC)
Speaking as some with eular-danlos type 3 leading to hypermobility, I was wondering if that might be a possible cause given the symptoms and you once saying you were super-flexy. You're not the only one with Ils problems, leading to trapped nerves and pain.

Just a suggestion, but have your PT person take a look at your feet and ankles, as posture problems start there, throwing your gait out which impacts the pelvis and back. Oddly enough, buying a pair of crocs, fixed the way I walked, which helped my back-pain!

Edited at 2014-03-20 09:31 pm (UTC)
21st-Mar-2014 01:00 am (UTC)
I keep wondering if you've got Ehlers-Danlos, which DNA should tell you.
21st-Mar-2014 07:59 am (UTC)

One thing to maybe talk with your doctor about is possibly switching from the naprosin to Voltarin SR which is the NSAID that has helped me a lot with my back issues.

21st-Mar-2014 08:09 am (UTC)

I think as a society we are just getting used to the idea of being able to talk openly about mental and emotional health issues. There has historically been so much stigma attached to these that we are just beginning to shed, and realize that there are needs that need to be met to be healthy in this part of our lives.
Perhaps, we could even look at it being a societal healing as things change.

21st-Mar-2014 08:16 am (UTC)

Brava! I'd love to see this expanded into a full article. You make a beautiful set of points here.

22nd-Mar-2014 04:16 pm (UTC)
For anti-inflammation, even stronger than Aleve, with less side effects to your liver, eat lots of TURMERIC. I'm doing research on anti-inflammatories. Also, PT is not evil (says the future physical therapist)!
24th-Mar-2014 02:21 pm (UTC)
being a foster parent means I need as few Lost Days as possible

Wait, have I missed something?
29th-Mar-2014 09:33 pm (UTC)
That's wonderful! Good for you!!!!
31st-Mar-2014 07:42 pm (UTC)
How exciting is it to - at 40 - be on a treatment regimen the goal of which is to make your body stronger so that it works better? At 45 I'm noticing more and more the little things that come with age - can't read tiny writing, stiff hands, that sort of thing. As usual, you are doing it differently because you are a mutant superhero.
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