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.

DD2 has been diagnosed with hypermobility, she uses cannabis to control the pain. She uses it in oil form and vapes it. She says it works better than opioids which wipe her out. Good luck.

My best friend has ehlers danlos syndrome, which is a form of hyper mobility that causes pain and other issues. Took her years to get proper diagnosis and treatment and only then because her toddler had it so they got genetic tests and saw a specialist. As PP mentioned, she also uses cannabis for it, on top of painkillers etc.

Thank you both for the replies.
I have actually been doing what you both suggest but I'm way past that being effective- I think this is why it's been manageable until now. Additionally, where I live we have roadside testing for the presence of THC ( Not impairment) when driving, and as I live in a regional area with shit public transport, I have had to stop the cannabis in order to protect my driving license.
I'm hoping for someone with similar problems to help me navigate my GP and give me some legal alternatives for pain.

Can you try amitriptyline? I was diagnosed by a rheumatologist as was my nephew. I'm not sure if that's the normal thing though. You clearly need more help than you're getting.

I'll ask about that thanks. Do you have the similar problems?

i believe the CBD oil from cannabis can be just as helpful as ful cannabis, but it has no THC so not psychoactive

Yes, I have JHS and fibromyalgia which is a fairly common combination. What you describe sounds like you may be in the same boat, it would explain what she was saying about hypersensitivity I think. I can just about manage with naproxen, amitriptyline and 30/500 cocodamol but it's a struggle. I don't think we really fit into any speciality which makes accessing help difficult. It might be worth asking for a referral to a pain clinic if there's one in your area.

I have hypermobility, on the less severe side of it as things go and have been prescribed Cocodamol and gabapentin. I also top up with cbd in vape form as a quicker form of relief when I've overdone it or am late taking my meds. Cbd contains no thc and doesn't show on screening tests

Thank you - Essa and LivingInMidnight, may I ask how did you get diagnosed?
Did you have to become a bit narky and demanding? As opposed to polite and enduring? Or did you go in and basically say I think I have this- help.

I will try to track down some oil - won't be a problem where I live. Though confirming the lack of THC might be a bit sketchy, as our medical marijuana industry is in its infancy here.

I can't take anti-inflammatories as they turn my stomach into a dead zone for days.

What I can't understand is how I've been sailing along for years, and all of a sudden everything is falling apart with a clang. And rapidly. And in whole new ways. Has this happened to others?

I think a first step might be telling the GP how reluctant I am to return to her, since the physio was actually more helpful, but I can't stand it anymore, and over-the-counter codeine does FA. I can't sleep for more than 2 hours at a time.

Thank you for responding, I shall have a read on fibromyalgia- I fit all the boxes for JHS from researching it ( once physio mentioned it)- and it explains a lot- including waking during surgeries on several occasions.

I have found not a single painkiller helps with my hypermobility issues and I was taking 17 a day at one point (not sure how I functioned as I was high as a kite). This in itself is a side effect of hypermobility in that your pain receptors are different to that of others. It also stops local anaesthetic working properly.
I do pilates exercises every day, targeting my problem areas (buttocks, thighs, shoulders) as well as attending a class. It took 18 months of pilates before I felt a difference, so it's a long old slog I'm afraid. It does work though. I found a gp attitude towards hypermobility to be shocking. One told me hypermobility didn't cause anyone any issues and he gave me a leaflet printed twenty years ago! It was a muscular skeletal specialist who performed prolotherapy on my pelvic ligaments, that diagnosed me, which was later followed up by a private physio.

Delilahbucket
That's depressing to hear.
My Pilates instructor pegged it at 6 months- 18 months!!! I definitely need a GP on board as the cost is ruinous without a care plan.
I found Endone helped but only at a higher dosage, if pain receptors are different then that explains much.Like why dentists have had to max me out over the years with Lidocaine.
Crap.

Saw my GP today who was actually helpful. She knew what it was. It's not a condition with much recognition in Australia apparently, so I guess she is more on it than I thought initially.
I now have a "formal" diagnosis of joint hypermobility syndrome. A care-plan for Pilates appointments plus a referral to a dietician to lose 15 kgs.
I also have scripts for Lyrica, a co-phase inhibitor or a different type of anti-inflammatory, and something called Targin for really bad days. These are to take till the Pilates / rehab work I'm doing has kicked in a bit more and my body is a bit more stabilized. She actually knew about the pain receptors working differently, and began to laugh at herself when she referred to normal dosages.
She also told me that that working with an exercise physiologist and a Pilates instructor will be part of life from now on, and explained why all my body was cascading into chaos as I try to remedy things.

Glad to read that you have a diagnosis and a clued up doctor.In my experience for me finally getting to that stage made all the difference as before that I found it difficult to cope with and to explain to others. Hope it does the same for you.

I have JHS. I tried the physio route but did so much damage in the process that I tore through both ACLs and am now pretty disabled. I found a lot of pain and tiredness relief by following the Wahls protocol. I wish I'd never gone to physio or tried pilates really - did me no end of harm.

IrritableBitch, I actually kind of agree with you there. I sometimes think that if I'd gone for the easy option of cortisone shots in each hip instead of physio, the rest of me would not now be unwinding. I won't stop Pilates though, as the hour or so after I've been, is the best I feel all week.
The Wahl's protocol is a diet yes? And that has helped you? I'm interested to hear.

And mylatop, yes - for once it's almost a relief to have a label.

My DH was diagnosed with hypermobility by an orthopaedic surgeon, he dislocated his shoulder twice so GP referred.
He uses NSAIDS occasionally for pain relief.

Hi, specifically, I wish I had avoided the physio as it led to me actually tearing all the way through my two core stabilising knee ligaments, meaning I can't walk more than a few metres at a time now without risking dislocation, and stairs - just asking for injury. The Wahls protocol is a diet I came across on mumsnet. Although it was devised for MS and autoimmune issues, I have found that eating this way leaves me mostly pain free and with normal energy levels. I think it has reduced inflammation maybe in my case? Also this diet is free of things that cause nasty gastro symptoms and low blood sugar, for me. So now I feel pain free (ish) and normal, but with dodgy knees and shoulders and ribs, rather than being completely knackered and useless.

I was diagnosed by a rheumatology consultant, by the way, which I think is usual in the UK.

Just to further add, cortisone may help temporarily, but it is treated the pain and it is the cause you need to target. Cortisone did nothing for my pelvis other than it being beyond painful and quite a traumatic experience as it had to be done in an operating theatre under x-ray. The prolotherapy I had got me well on my way to recovery. This was also beyond painful but it was administered by a lovely doctor and it did help.

How nice are you all!
Apparently, Australia is fairly useless with this condition, and my doctor mentioned the rheumatologist but can't refer me to one her for some reason- but would if we were in the UK.

And Naicebiscuits- I absolutely know what you mean about Tiger Balm, I have an oil one, and a roll-on version that I got in Asia - bought like 10 bottles. I adore it - placebo or not.

Delilahbucket, I couldn't face the thought of the cortisone into both hips- I had that done once for a foot issue and spent half the night shrieking in agony after the local anesthetic wore off. No way was that happening in my hips . You are braver than I am.

I'm fairly sure I'm headed for a no gluten, no sugar type diet which is supposed to reduce inflammation, it will be interesting to try to lose weight with limited exercise but needs must I guess. I will have a look at the Wahls protocol. I have a couple of friends with auto-immune conditions who follow The Gap diet with big success, so definitely believe you may be onto something Irritablebitch.
Thank you all so much.

To be honest, the UK isn't very advanced either!
If it is of any help, I lost four stone (not that it has made any difference to my hypermobility) just by calorie counting. Obviously my exercise ability is extremely limited so I did it purely by monitoring what I ate. I didn't deny myself anything either, just ate less. I wish you the best of luck with it. You can do it.

Happy to hear it's possible.
I need to lose about 15-20 kg or 2 stone which will have to be done monitoring food, as my exercise ability is also limited though that may not be permanent( I hope).
So good to know it can be done without charging around, I'm told it'll help my hip and knee joints but will see.
Learning about all this is weird as it's sort of offered answers to many things over the years. I've even found out one of my legs is shorter than the other in the femur. So orthodics as well in one shoe.
It's getting a bit much- I don't need any more bits dropping out on me, but I really like the Pilates - the hour after a class is the best I feel all week.

I have the appearance of one leg shorter than the other as well, but it is because my pelvis twists.
I went to see a knee surgeon after my kneecap started sliding and that was while I was losing weight. He told me that while it was good I was losing it, my condition wouldn't be helped. He was right. I find hormones and tiredness play the most significant roles in pain management, as well as making sure I do my exercises. I'm always worse around ovulation right before my period. Coming off the pill helped me see that. I don't think I could ever go back on to hormonal birth control as they all contain progesterone and my body doesn't like that stuff 😂

I'm much worse when progesterone levels are high. It's something to do with it adding to joint laxity. I can't do estrogen either because of lupus anticoagulant. 🙄

I do physio exercises every day for my hips but I'm forever having to click the right one back in so I'm not sure what use they are. Been doing them for 2 years I think.