Hyper-mobility, pain and my doctor

[CommanderDaisy]

First post, and after some advice please, if there is anyone out there. From beginning to end of the experience below it has been 4 months in total.

I'm 45 and after 18 months of constant pain in both hips, lack of sleep from it, and extreme sensitivity in sacrum area hauled myself off to my GP.

She sent me for a spine X-ray and hip MRI, and gave me a single script for 5mg Endone for a "break". ( I can't take anti-inflammatories). Results came back- she told me it was muscular, I was hypersensitive to pain and to go to a physio. I was a bit..er...okay but did as I was told. The Endone did nothing at all, till I tripled the dose after calling the surgery, and damn it was nice to not be in pain for a few hours.

Physio performed a series of stretches which, due to the extreme range of movement in my hips and spine became somewhat funny, and he then did a series of other tests(thumbs to wrist, hands flat to floor etc) - result being that he was sure I had joint hypermobility syndrome with bilateral trochanteric bursitis in hips. Rang Dr, and off for ultrasound which confirmed the bursa diagnosis.

Finished with physio, and onto a Pilates instructor for regular strengthening sessions.

My problem is this. I have pilates sessions 1-1 three days a week and have a few things to do daily at home.
But while the bursas have reduced in their inflammation, my pelvis, knees, and ankles and whole hip joint are tanking ( cracking, locking, dropping out) and add in both shoulders and I am falling apart in the process. The physio said that things would get worse before they got better, as has Pilate instructor but my pain is constant and driving me bonkers. I cleaned the house for 3 hours this week and ended up in tears, slathered in liniment, and with hot water bottles/ice packs hanging off me for two hours on the couch. I constantly feel as though most of my body is at the painful end of a really deep stretch, and my hip joints are firing off regular daggers of pain internally.

My GP hasn't diagnosed me with JHS- it was the physio, and after her "hypersensitive to pain" comment I'm not feeling very confident that she will help me or can. She missed the bursas too, it was the physio who pinpointed these.

I am happy to continue the strengthening work, as I know it will help in the end but don't know if I can survive the process the way things currently are. I also feel a bit funny going to a doctor to ask for strong doses of painkillers just so I can get some stuff done and actually sleep.
Any ideas on managing the pain, or what I should communicate to my GP when I see her this week?
I should also note it is almost impossible to switch GP's where I am- most of their books are closed.

Delilahbucket - I'm wondering if that could be the case with me, as the shorter leg is on the worse side. Currently, I can't put full weight on that leg, due to god knows what - nerve pain, sciatica etc and the bastard gives way if I do.
LivingInmidnight and Delilahbucket - yes re worse around period, and then I seem to somehow injure myself during it- would that cause everything gets extra stretchy?
My right hip does this thing where it seems to flex out someone ( hard to explain) then slips back in which completely throws my balance off - it did that the other day and now I've got all this pain running down the outside of my leg - is that it popping out of the joint?

Sorry for all the questions, I've googled so much but it's easier to talk to people who are in the same boat. Thank you again

It sounds like you are having subluxations which is a partial dislocation. You are more susceptible when progesterone is high as your ligaments are stretchier. You will improve with the exercises though and while you will always have to be aware of it, it becomes manageable.

I have hyper mobility, patello-femoral pain syndrome, and impingements in my hips...never been prescribed pain killers for it, just told to take ibuprofen for it (which I now can't!). barely shifted it. had an operation 3 months ago in my left hip which only actually managed to get half done thanks to me both aspirating and swelling up too much during surgery, but it has helped a little.
I've always found that physio didn't really do much as it's all just about strengthening. Well, I'm already strong enough in my joints, it's more about learning the control and not to hyper extend, which I always found yoga is good for! My instructor knew I was hyper mobile and adapted exercises for it! I know pilates is also good for it as it's also about controlling the flex!
Don't know if any of this helps? haha!

DancerMumma - everything helps! I have been banned from yoga for the time being, which is a bit shit as I had just started regular sessions before everything decided to fall apart. I lack the strength at this point and am ridiculous bendy in hips, back and ankles which hasn't lessened with age. I think Pilates is helping a little, though it's very early stages.

DelilahBucket - gulp. It's actually half dislocating? It did it the other day, and now I can't put weight fully on that leg, without getting dumped on the ground. Can it actually pop out completely? ( I'm guessing the answer is yes). I suppose I should be happy the left side of me is currently co-operating except for my shoulder.

It's all going to be about time and sticking to the exercise, isn't it?

The way I pop mine back in is to lay down, lift both legs up 90 degrees then move the dodgy one to the side until I feel/hear it go back in. I'm not sure I'm explaining that well! I'm not sure how safe if is but it relieves the pain a bit.

I injure myself just before my period too. It throws off my coordination too. It's very strange really.

I have dystonia in my feet and stumbled on something the other day that said it could be related.

I'm another with JHS, although I do have it mildly compared to a lot of people. It still impacts my life though. The only joints that ever fully dislocated for me were my knees, and I had a ligament tightening operation done years ago, which sorted out the dislocations, but they still sublux. My elbows, hips, knees and shoulders are the main joints affected, and they all sublux.

I declined physio recently for my knee instability because the physio was completely honest during his assessment and said it would be at least 18 months of hard work for very little benefit, and possibly making other joints worse. So it's definitely a known 'thing', if that makes sense.

I didn't know there was a specific protocol/diet to follow, so thank you to the posters who've mentioned it. I have problems with inflammation for sure as I have other health problems linked to it (inflammatory eye stuff, insulin resistance, blah blah).

It's such a nice thing to hear from other people about this, though not so nice hearing what you all go through.

LivingInMidnight, you essentially described what my osteo showed me to do yesterday.

I live in the "natural therapies" "woo" capital of Australia and while I've turned down a number of ...er...interesting suggestion ( including staring at myself naked in the mirror, holding various body parts and muttering at them how wonderful they are, and they will not be painful today....ffs) I have started taking a load of really high dose of turmeric supplements to help with the inflammation. I'll give that a few weeks and I'll share if that seems to help or if anyone else has tried that -
please let me know.

Beefarseer- oh dear, I hope I don't get to a surgical point at any stage.I wake up during operations and start asking questions- I can't see that working with a hip op. I'm so early on in this "system collapse" that I am still hopeful exercise may help. My right side is bolloxed right now and I think my knee pops in and out as well as the hip in a forwards facing kind of way.

It's weird and a bit shit, I'd have to say. My husband and children are currently comparing me to a B52 bomber trying to take off when I get out of a chair, long run off before getting airborne apparently. If I didn't love them, I'd kill the wee buggers and the big one.