Has anyone recovered from worsening hypermobility pain after pregnancy?

[Mummummum55432]

Anyone here with hypermobility that still hasn't recovered from pregnancy? My hypermobility was mild before I had my son, who is now 2. PGP and a few others things absolutely crippled me in pregnancy. I'm now 2 years on and I'm in pain all day, every day, and I am completely exhausted (which I've been told is common with hypermobility). I've had MRIs, blood tests etc and everything looks fine. I've seem a rheumatologist as well. Everyone's answer is to see a physio regularly and exercise to get fit. But even the most gentle exercise leaves me in agony. Physio is costing me a bomb. And I'm doing all this while caring for a 2 year old and working full time.

Pre-pregnancy this was a very mild condition. I kept relatively fit and trim and I was fine. I honestly don't know how I'm going to carry on at the moment.

It's also meant there will be no baby number 2 ever, as even IF I start feeling better, there is no way I can crippled myself like this again. I'm afraid I won't recover the second time. Which is depressing as hell in itself.

Hoping someone comes along and says they managed to recover.

I have hypermobilty which got worse during pregnancy but not as bad as yours. The only thing which has helped me is regular pilates. This strengthens my muscles so that they can support my super stretchy ligaments better. I will have to keep doing it at least once a week for the rest of my life to maintain the muscles.

@Geneticsbunny thanks! Yes, exercise is the only solution long term but I'm in a catch 22 where I'm in so much pain, even the lightest pilates or a 20 minute walk leaves me in a lot of pain for days. I can barely cope with day to day life.

I was very fit pre-pregnancy and I was aware I needed to keep fit but I was incredibly sick for most of it and in crutches from 34 weeks as well, so all fitness just went.

Could you start with pelvic floor exercises?that would strengthen your core a bit too and you can do them sitting down.

Mine wasn't as bad as you describe before or during pregnancy but I found that the only thing that helped was going to a chiropractor regularly (I had back pain before pregnancy and the hip issues began during pregnancy). It has cost a bomb and I've had to cut back in other areas to fit it in the budget, but it was worth it. I'm on baby number 2 (and 3!) right now and going every 2 weeks which is terrible financially but I know that it's better to take the hit now rather than suffer later on. Is it a possibility to squeeze in physio/chiro? It's been really worth it for me 🙂

I was on crutches for a hip and foot problem from pregnancy. The hip hasn’t got totally better, but swimming has helped. The foot i needed an cortisol injection in which allowed the inflammation to die down and the foot to heal! But yes, my EDS is definitely causing more problems now than it did before pregnancy

Is your pain in a specific place or body wide pain?
My second pregnancy triggered a bit the same for me, it was many years ago and I didn’t realise at the time it was linked to my hypermobility there was no internet like there is now so we all just bumbled along without a clue.
Did the rheumatologist mention ehlers danlos? I don’t have it but one of my dds does. Or even fibromyalgia? The same dd has this too.
There isn’t much that can be done, I find breathing correctly helps a lot, as does drinking water and yoga and Pilates. Sometimes I take painkillers if it’s really bad but I try not to.

Have you had your bloods checked for iron, vitamin d b12 etc?

Thanks everyone!

I'm seeing a great physio who is also an osteopath at the moment, who is wonderful. I only recently found her. She's great but it's costing a lot of money, it's £85 a session.

And I would throw all the money in the world at her if it could fix me but I also need to exercise 4-5 times a week as she says getting stronger is the only fix and also rest and somehow also work 50 hours a week and care for a non-sleeping toddler while I'm in agony.

I'm not exaggerating when I say I'm in agony, my back, my hips, pelvic area, everything is excruciatingly painful. It's really affecting my life so much.

I have had bloods, and iron, vitamin D etc are all fine. Iron is a bit on the lower side so I have been taking supplements and I was taking vitamin D anyway.

If all I need to do is push through a really hard period and know that in 6 months I'd be normal again, I think I could do it all. But it's been 2 years and everyone said it will just get better with time so it's getting me down.

What’s your partner doing? The non sleeping toddler shouldn’t be all on you.

Partner is great, but we live in a small 2 bed central London flat. Screaming toddler at 2am would wake anyone, probably wakes the neighbours too.

I’ve been in the same boat. Except I didn’t know I have hypermobility until my child was later diagnosed. The exhaustion is unreal and difficult to explain to others.
the only thing that got me to a liveable place again was swimming. Just a gentle swim for an hour each week gave my body the exercise it needed. Post swim was hard as it was more exhausting - but one night later I’d start feeling much better. Swam every week through my next pregnancy and my recovery was much much better. Re-started when dd2 was 4 months old and continued ever since.

Both my children are non sporty due to hypermobility but I’ve made sure they are good (not fast) swimmers as they will need it later in life.

And I couldn’t cope with the night waking. DH took the brunt of it as he knew I can’t. I only woke to feed and once I stopped I never did night waking - even as the kids grew/fell ill. Just cannot cope with broken sleep.

I had very bad PGP in pregnancy and it continued to be pretty bad through the toddler years due to the lifting/wrangling/bending over car seats etc! It is a lot better now my DC is a bit older. Yoga and a chiropractor have helped.

Yes with the help of a really good personal trainer. I had horrific SPD from 8 weeks pregnant and was in so much pain. I can truthfully say I’m not in pain now & when I am, going back to my basic exercises gives me better relief than a hands on physio appointment.

In pregnancy your breathing & movement patterns adapt and you don’t necessarily regain your pre pregnancy patterns automatically.

There’s a number of online programs focussing on these principles, quite often the instructors are hypermobile themselves. Caroline Packard is one of them.

Osteo/physio is a temporary fix, you need to essentially start relearning how to breathe/move/lift weights again to fix the problem.

Have you had your pelvic area scanned to check the separation has closed because excruciating pain in the pelvis and hips for two years after pregnancy is not normal and shouldn’t just be explained away as hypermobility.

I’m in my sixties and was diagnosed with hypermobility about 27 years ago after I had DD. As you can imagine, in the past 27 years I’ve had every treatment imaginable. I was in a wheelchair for a while.

Why are you paying for physio? Are you not in UK? I have always got mine free.

That aside, stop taking advice from anyone who isn’t aware of your particular situation. Hypermobility affects different connective tissues in different places over a lifetime.

I am completely banned from doing yoga, Pilates, or swimming for example. There’s a risk my hip could dislocate!

Just do the exercises your physio gives you and do them religiously. The only other thing that has helped from time to time has been steroid injections into specific sites but you can only have so many.

In your shoes I might divert the physio money (once you have your exercises you are good to go surely?) into seeing a private MSK consultant.

Sorry to hear about this OP. I am hypermobile and suffered badly with PGP throughout pregnancy 2 years ago. I saw a physio throughout who mainly worked with me on strengthening my core to better support my joints, and for a few sessions afterwards. I was fortunate enough to arrange this through my health insurance. More recently I have found pilates and yoga extremely helpful. Essentially as soon as I managed to build some core strength I noticed a real shift in pain levels, but this was a slow process. That being said, I did notice a lot of relief post birth so it is concerning to hear you are still in so much pain at this stage - definitely worth pushing for further investigations if you can.

Thank you @Zempy ! My physio has said I need to get fitter and do more cardio, in addition to the exercises she gives me. Yes I'm in the UK but I have no hope of accessing the NHS. I have had PRP injections in my hip before, pre-pregnancy, as I have a hip labral tear, which helped a lot, but they're about 1k a shot and physio isn't convinced this is needed or helpful yet for my PGP.

It's not so much about exercises, I need her to release the tension regularly. My vagina is absolutely clamped shut and the muscles are so incredibly tight I cannot even walk sometimes and regular physio is the only thing that helps. She releases the muscles in my lower back, hips, and pelvic are in various ways, including internally, and I feel like a million dollars afterwards.

@noramoo I've already had investigations (scans, MRI) that confirmed nothing is seriously wrong, but they showed a lot of inflammation in the area which is apparently the culprit.