Anyone with hypermobility (HMS) want to chat about coping day to day?

[GrouchyKiwi]

I was diagnosed a few years ago, at the ripe old age of 28. I don't get loads of symptoms, but sometimes my knees, ankles and wrists can swell if they've been overworked. Physio has helped a lot with strengthening my legs and I have a splint for when my wrist gets bad.

The main reason I've made this post, though, is that it seems like my periods are now having an impact - or a noticeable one anyway. I started today and have realised that the pain and extra looseness in my joints over the past few days is probably because of that. My shoulders have been so loose that they crunch as I breathe. Have never had that before! I suspect this is a change post-pregnancy.

So I'm wondering if anyone experiences this too, and if so, is there anything you do that minimises the effects? It's been painful to hold my baby the past few days.

TIA.

Hi drshoe

Big aches here too today. Grrr.

Apparently (can't see name on this app ) many many people with hms are told its anxiety / health anxiety. It really is only a problem if you have pain and fatigue and weakness.

Best way is to ask for referral to rheum.

Gymnasts ballerinas etc use it to their advantage, though of course many find life hard when they're older.

Thestory (sorry forgot your name) - your first post describes so very accurately the issues caused by it.

Keep seeing different Gps until you're listened to. I was lucky in that my gps already had someone with the condition who was badly affected.

Can I jump in?
I was diagnosed 5 years ago after a childhood of docs head scratching and misdiagnosing

Hips, knees and wrists are badly affected also had two c sections in two years and been breast feeding for 2.5 years (two children for the last 8 months)

Trying to lose weight to ease pressure on joints but finding the fatigue and aches difficult. I find if I carry either of the children too long it takes days to recover, to a point where it's just usual level of discomfort rather than pain.

I have no idea if there is anything more I can do

Hi mrs - afaik tell (esp with 2 sections, as this really did for me too) pilates would be very helpful but would need long term commitment to get anywhere.

I'm finding regarding carrying a toddler, a big taped cross across my back from top of collar bone to opposite hip, crossing where bra strap would be, applied when very upright in best posture position (shoulders back etc). It just eases the pulling on my shoulders. But maybe a visit to a physio?

Well done on the tandem feeding!

Yes I have a connecta which I find great for the youngest. It forces me to stand properly too.

How old before you noticed it in your dc? I'm pretty sure eldest (dd) has it. Her ankles fall inwards when not in shoes and she has the same dimples in lower back, seems very clicky and often complains of her knees hurting or sometimes cries when she puts her hands down to get up rubbing her elbows. She's only 2. I remember being in so much discomfort as a child and it breaks my heart to think she could suffer too. The physio I saw told me had I had intervention when I was young (splints in shoes to straighten etc) I wouldn't have the issues I have now so I'm keen for want of a better word to get her sorted early.

My gut tells me ds (8 mo) doesn't have it. He hadn't the dimples at the top of his bum or the bluey whites of his eyes that we all have. Admittedly he is much more robust and chubby than my eldest so that might be clouding my judgement

Hi, can I ask a question?
I'm hypermobile, but also have arthritis so I'm trying to work out which symptom is which....
I know that sometimes I overextend my knees (which hurts like hell), but I also get a horrible feeling of the bones grating together which is not the same. Anyone else get this?
As you can tell, I've been given very little information about hypermobility or arthritis.

Mrsanti, I loved my Connecta until my DS was about 10mths & then needed more shoulder padding. I'm trying to get used to a Tula, but don't think I can really adjust it small enough. A Wompat I hired from 'It's a Sling Thing' was best I've tried for back carries which I now do. They're expensive though.... All in all, not using a pram for DS (baby no 4!) has been a revelation. My back used to be in bits by now (he's 14mo). Buggy in & out of car & pushing in front of myself caused so many issues. And congrats on tandem feeding! I think my aches improved once my son weaned (at only 10mths) but my periods are now normalising & I think I'm worse when it's here. My hands are quite sore ATM.
Thx Clarella, will see GP once do go back to school.
Mine, I haven't been diagnosed with either HMS or arth. Sorry, not much help. I'd describe the ache I have as being like toothache. Not bone grinding. And I have heard ppl with arthritis describe that pain as bone grinding....Except my SPD. Not like toothache. It's awful ATM (period?). It's like a knife in my R groin/pelvis. Takes my breath away if I try to walk too fast/upstairs/get in or out of the car. Is that what other experience? I really haven't seen any HCPs regarding any of this. Was told at antenatal I probably had SPD & was offered a support band (useless) & that was that. Didn't discuss it again, just read up & made changes & slowed down. By the time DS arrived (at 35 wks) I could barely walk though.

I'm hypermobile but don't have the syndrome diagnosis yet. I have ME and so a lot of my issues are put down to that but I sprained my ankle last September and it's only slightly improved now. My arms dropping out of the shoulders has got worse the past two years and I've always had pain with my knees but they now make a funny noise when I go up the stairs. Looks like I may have sort of compression of the spine. So I'm riddled with conditions and syndromes and at the minute I don't want to add another one to the list as still trying to get all others sorted. Physio said he's surprised I've only had two sprains before.