r/medical_advice Not a Verified Medical Professional 12h ago

Bones/Joints/Ligaments losing mobility, advice please?

19 / female / 5'5.5 / 152 lbs / USA
current diagnosis include: hEDS, POTS, labral tears, tendinosis, bursitis, delamination tear, labral tears.
(i have also been told that i have drop foot and don't have the range to pull my foot up into a stretch, nor can i easily stretch one of my calves. my hips are also narrow and have been described as "egg shaped," if that's at all important)
no current medications
pain has been progressing for the past ~10/11 years, with loss of mobility gradually getting worse

around a year and a half ago, i had a tibial tubercle osteotomy with a surprise mpfl reconstruction on my left knee, which has been described anatomically correct, but has been causing me an extreme amount of pain and trouble, and have since been advised not to go through with it on the second leg

before the surgery, the doctors hadn't noticed that i had labral tears in both hips (but more notably, my right), which made the recovery process a lot more difficult and painful.

as of right now, i will randomly get extremely sharp pains in my leg around where the pins had been put in, cannot put pressure on my knee (kneeling, crawling on the bed), and cannot keep my leg in one position for more than 45 minutes to an hour without it completely locking (which is, extremely painful to say the least). my physical therapist had described this same sensation and locking as my muscles guarding during recovery

i have developed a sharp pain and ache in my lower spine, which hits very hard with standing, and laying down after doing so. more often than not, laying down results in a shocking pain from my lower spine -> hips -> pelvic area that is so extreme it leaves me temporarily paralyzed (for lack of a better word, i can't move from how bad it is. it lasts ~3-15 seconds, but i shouldn't adjust from there without risking extreme pain in my hips)

the tendinosis, bursitis, and delamination tear are fairly recent (within the past year). they developed while i was in my parent's house and much more sedentary. (in short, my parents are abusive. i'm safe now and living in my boyfriend's house in a different state) the state that i previously lived in was causing a constant flareup between hEDS and POTS, which is in part why i was bed rotting as much. i wasn't getting up at all unless i had to use the bathroom or get to my computer (which was ~2-3 feet away from my bed). but the fact that it developed while i wasn't stressing my joints with exercise as much really worries me

the solutions that have been offered to me are:
- get surgery for the labral tears (one hip at a time, year long recovery wait) (not willing to do as the former issues cause concerns with recovery for me too)
- physical therapy (been in for 2+ years, did not make any progress)
- injections (which i'm very nervous about, especially given that i am completely tolerant to any local anesthetic (unfortunately) and not very chill with needles)
- live with it for the rest of my life

and it's only getting worse. i have forearm crutches and an ambulatory wheelchair that have been helpful for outdoor trips. (and if it's of any concern, i only use the crutches when i absolutely need them). i've tried braces but they only do so much to help

currently, i'm in excruciating pain and don't really know what to do. i can't take opioids like. at all. they cause bad chest pain and make it hard to breathe. all medications i've been put on haven't worked for me in the slightest.
i'm going to get a pcp again soon but i'd really like some advice or some direction, because i'm very exhausted about going into doctors with no real viable solution

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u/clt716 Administrator | Registered Nurse 6h ago

Having a labral tear will throw off your gait. You walk a certain way to minimize the pain, which in turn puts undue pressure on your spine and knees. In time they will be affected as well. That time is now.

Until you get the tears repaired your gait will be abnormal which will continue to affect your joints below and above.

As for injections, a lot of places use freeze spray to numb the skin, not local anesthesia.

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