There’s a grave danger of me launching off onto a 20 page rant - but I’ll try to keep it short!!
I’ve had similar experiences. I practiced martial arts for 20 years and was very fit, strong and flexible. Then one day my hip seized up overnight (in retrospect I can see that the problem had been developing for a decade or more). Physios couldn’t figure it out and I was eventually sent for an x-ray which came back saying “degenerative changes in both hips”. Perfectly common in symptom free 42 year olds, but from that day on I was labelled as having hip OA and told to stop training and come back when I needed a hip replacement. I’m not going to launch onto my normal rant about my experiences of health professionals - I’d be preaching to the converted anyway!! :O)
I knew it was nonsense. I felt that it was a rotated pelvis knocking everything out of alignment. The problems rippled through my whole body. I have spent thousands on various experts and had similar experiences to you. They often start out promising the earth, but after a few failed treatments they loose interest and change their diagnosis to hip OA. Which just doesn’t fit by any stretch of the imagination. They don’t want to hear your ideas, experiences thus far - the just want to go through their preferred routine without thinking.
I ended up having to figure it out for myself. Your symptoms aren’t the same as mine mine, but some of the things you’re saying match. It’s quite possible the mechanisms are similar - so basically muscle imbalance (I know you’ve kind of ruled that out, but stick with me…).
Have you had anyone check for sacral torsion? I’ve attached a video animation of what happens to the sacrum (base of spine) and innominates (wings of pelvis) during normal gait. This is exaggerated - the movement is subtle. The sacram is very significant as movement of the whole body is closely tied in with it. So for example, when the sacrum tilts right and rotates right the lumber spine does the opposite (rotates left and tilts left); the thoracic does the opposite to that (rotates right and tilts right). All sorts of things happen down the way too. So when sacrum tilts right and rotates right the right innominate goes into posterior rotation and inflare (and maybe downslip). I don’t remember the details, but the pattern ripples down the legs too. A predictable pattern - you get a clue of what’s happening all over the body based upon where the sacrum is positioned. It’s just the way the body works.
The sacrum (and therefore the whole body) can get ‘stuck’ at any point in the normal cycle. Not necessarily stuck even - sometimes it’s just more mobile one way than the other. Visualize how it’d feel to move with the structure jammed at any one point in the cycle shown in that video. That’s what it turned out to be with me - right on right sacral torsion. Because all of the boney landmarks are out of place muscle attachments are in the wrong place. Some muscles are in a disadvantaged position and can’t fire. Others try to take up the slack but aren’t suitably positioned to do the job properly. Everything just feels wrong and works wrong.
There are lots of positions that the sacrum can ‘stick’ in. So symptoms would vary. Also, knowing you have a stuck sacrum isn’t really a solution as you still need to figure out why. It’s a chicken and egg thing - are the muscles tight because of the stuck sacrum or is the sacrum stuck because of tight muscles. Tight thoracic could be knocking the sacrum out of place which in turn jams the knee into a bad position. It’s complex. Essentially I think it’s always down to muscle imbalance but these can be impossible to untangle. The physios didn’t pick up on my sacral torsion. The chiros and osteos did but had no clue how to fix it. The surgeons just wanted to operate!!
Sources of information that have been very helpful to me include:
The Postural Restoration Institute.
http://www.posturalrestoration.com/
Look through their articles and see if anything matches up with what you’re experiencing. They could put you in touch with someone trained in their methods if you think it sounds promising. I’m in the UK - if you’re in the US I think you’ve got a much better chance of having someone near you.
Neuro-Kinetic Therapy.
They have a webiste but if you’re on FB follow them there:
They post up regular case studies and little scenarios that just make you think “Of course - it’s so obvious!”. They too could put you in touch with someone trained in their methods if you think it seems promising. I think this is the one that best explains what’s going on with stubborn muscle imbalances, and how to fix them. This one could be of great help even if your problem is nothing to do with twisted pelvis/stuck sacrum. So have a good look at this one.
I managed to figure mine out on my own, but it’s taken 8 years! Like you, I tried lots of physio/exercise with ZERO impact. But when you find the route of the problem and do the right things you can get results. So don’t rule out the possibility of muscle imbalance. Really open your mind to the Neuro Kinetic Therapy ideas and see if it starts to make any sense.
I totally get what you’re saying about paying out for endless ‘experts’ that are worse than useless. How do you find a good one without paying 100 useless ones en-route?
I hope that this can help in some way. I know how frustrating it is!!