Hypermobility joint pains - help!

[desperatelyseekingcaffeine]

I'm after some collective wisdom - sorry for long post! I have hypermobility and currently struggling pain wise after having my second child 9 months ago. I had PGP badly during this last pregnancy, though oddly not with my first child. Although I had a good couple of months following the birth, the pains are back and pretty restrictive as I'm exacerbated by driving and walking any distance. The main problem is my right SI joint but affecting multiple joints atm.

I've been through physio, who hasn't been able to improve things as she feels my joints are too unstable and irritable. I'm due to return to work in a few months and want to be fit enough to manage, and to get back to normal myself! She's suggested the GP refers me onto orthopaedics or rheumatology but isn't sure they'll have much to offer.
My question is are there any other treatment options worth looking at? Either NHS or private. What can I do other than my current physio exercises to help myself? There seems to be a few hypermobility clinics but none near me and I'd like to know if there would be a benefit from paying privately and travelling to them. Anyone been to one and found it helpful?

Any advice/suggestions very welcome, or recommendations for people to see, things to do etc!

Do you do any exercise? Some can make it worse and some can help. I do Pilates to strengthen the muscles and hold the joints in place. It is a proper Pilates class run by very highly trained teacher at a physio clinic not run of mill gym class. It has helped me a lot, my shoulders especially seem to be more under control. Anything like yoga can make it worse.

Also I had massive issue with a lot of physio exercises in that I can do the 'advanced' ones but not correctly. My body seems to cheat and engage all the wrong muscles. Apparently this is common in hypermobile people, we tend to overuse the same muscle and the little ones get ignored which I stabilises everything.

• which unstabilises everything.

Long answer short? No, there isn't anything I've found to make it better. My shoulders, hips and knees like to take turns to misbehave, currently in knees from when I dared to take a walk in the woods with my kids a week ago.

Thanks both. Verysadinside I don't do any regular exercise. I've been told by both physios I've seen that I definitely shouldn't start any including Pilates at the moment as it could cause more problems. A friend of a friend does a proper physio Pilates class and I was hoping to get stabilised enough to start going but no luck so far.

I agree with the 'cheating' there's an amazing difference when I do what I think is the correct way to do the exercise and then the physio corrects me. I've been restricted to less than 5 mins at a time on the gym ball doing tiny movements atm and it's really frustrating! I know it's the right thing but feels like I'm not doing anything to help myself!

Yep titsalina, my joints seem to take it in turns normally but right hip just won't settle at all and others butting in too. It's rubbish not being able to do the normal things with your kids (or suffering later for it) isn't it?!

There are things you can do to help. I've gone from being in a wheelchair to living some kind of normal life with this retched thing.
If your physio said they couldn't help you then they are not doing their job. Were they NHS by any chance? I got nowhere with them and paid for a physio privately in the end, who manipulated me into the correct position and have deep tissue massages every week. They also set me up a gentle exercise programme (just little muscle squeezes at first) to build up my strength. I have also had prolotherapy in both SI joints and symphysis pubis, and I now do a physio led pilates class every week along with daily exercises and stretches. It is important you seek proper guidance before embarking on pilates exercises, otherwise you can do yourself more damage. A good starting point though is pelvic floor exercises. Do them 50,000,000 times a day! If you can afford a private physio appointment, even just one, it will help. There are plenty that specialise in hypermobility.
This days my flare ups are hormonal. My body doesn't get along with progesterone and between ovulation and my period can often be hellish. I know when it's coming though and can work around it.

Thanks delilah - that's exactly what I wanted to hear! Yes it was an NHS physio so I'm looking for a private one now. I went private in pregnancy as NHS referral list in the system and that physio was worse. Is there a good way to find a physio with an interest in hypermobility? Google not much use and I wonder if I phone places up if they'll just say yes they can deal with me but lack the expertise. Maybe I'm just too cynical!
I think hormones are playing a part. I'm desperately trying to wean my wee one off the breast but not helped by her refusing bottles and the dairy free formula. Getting somewhere in the last few days though so hopefully she'll be off soon. Don't know what to do about my Mirena it was awful to fit but great when in so reluctant to have it out unless I really need to.

I'd suggest a good private physio also. I don't have painful hypermobility but dd does, to the extent that she is learning to touch type to write because writing is too painful. We focus on making her strong. All things considered, she is quite active and physio x 5 a week. We had a private session, to put her 'on track' and get advice on how we should access support under the NHS.

Her ankles are also affected, so we also see podiatry.

I would suggest seeing a sports physio, I think they have a much better understanding of hypermobility than your regular physio who may focus on rehabilitation and so on.

Look for a physio that lists women's health (those who deal with SPD/pgp/prolapse) as they tend to have the necessary knowledge. If you're in West Yorkshire I can recommend a couple.
I personally, would never have any type of hormonal contraception that is just progesterone. It is well documented that it can make hypermobility much worse. I was on the combined pill for many years. My symptoms really kicked off when I took three packets back to back (on the advice of my GP due to migraines). I'm sure that had something to do with it, although I had also had a fall around the same time. I have been off the pill for over two years and while my flare ups are worse, I know when they are coming and I do get a good week each cycle, whereas before I got no pain free time at all. My kneecap started to subluxated a couple of months after coming off the pill. I saw a knee surgeon who asked if I had recently gone on the pill as he had seen many women with similar problems caused by hormone fluctuations.
There is a suggestion that breast feeding also contributes due to the hormones that stick around. For this reason I have already decided that I won't breastfeed if I have another child. You're no good for your child if you're immobilised!

Thanks I'll try sports physios - I went for a woman's health physio while pregnant but she didn't seem to get the hypermobility aspect at all. Current physio seems to understand it a lot more but I've had my lot of nhs sessions and she hadn't been able to make any progress so far.

I think once she's weaned off me - only on night feeds last few days so getting there - I'll think about getting coil removed.

I have SI problems and some hypermobile joints (no formal diagnosis). I had SI problems when pregnant and they flare up every so often. I found a video online which said that SI problems can be exacerbated by tight muscles on the outside of your leg. Try pressing on your iliotibial band on the outside of your leg and the outer portion of your thigh muscles. If they are tight they can be pulling that side of your pelvis down a bit causing the SI joint to displace.

www.do-it-yourself-joint-pain-relief.com/sacroiliac-joint-pain-relief.html

In my case I think because my knees are a bit unstable (and I tend to hyperextend them without noticing) those muscles tighten up when I walk a lot.

Following as I am in a similar position. I have been having private physio pretty much weekly for the last 6 months but now my physio says that I'm too unstable to respond to treatment so has told me to see a consultant for an MRI to see what might be going on.

Hope you manage to get some answers and a plan sorted. I've had some success with physio strengthening exercises and swimming, but even a long walk can set off loads of pain. I dared to go on a gentle national trust walk yesterday and have suffered for it today.

Luckily consultant is tomorrow so will see what imaging he suggests.

I have SI joint instability and am hyper mobile elsewhere. I have been helped by a chiropractor (after trying physiotherapy) thought manual adjustment and also through exercise programmes.

This difference between a physio and a chiro is not many physios adjust/manipulate whereas chiros do. Plus a chiropractors main focus is your nervous system, which is a different approach.

You could try a McTimoney trained chiropractor as their technique is particularly gentle and very popular.