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.

Notcitrus that sounds really tough with a little one :(

Funny you mention tight muscles; been thinking that actually my issue is more that my muscles are too tight. I seem to have to stretch carefully and also have a constant desire to be stretched or stretch. It gets quite horrid in a sensory way. But if I keep on top of it my joints are better. It's mainly this that extra iron is helping but ferritin was only borderline at 55. So I'm just thinking I need more than some.

I'm struggling with lots of tightness in my ribcage / upper torso at the moment which I can't quite work out how best to stretch. It makes me crampy and sore at night.

Just marking my spot as I'm going to come back later....

Ok I think I've got my head round the bf thing.

I think it's believed to be like this as bf often staves off periods (2 years for me). When they restart there's more oestrogen about which is seen as a joint 'stabilising' hormone.

However, along comes the progesterone and more relaxin too, as well as the unpredictability with their ups and downs. Plus way more blood/ iron loss than bf.

But the resumption of periods is different for everyone so it's (imo)misleading to blanket it with and link it to bf specifically.

Please correct me if anyone knows different! I've been looking through the hms forum about it too.

Certainly my experience is that periods cause a lot of trouble and also for me getting my thyroxine meds right as that impacts muscle mass/ strength.

I'm trying to weigh up if a contraceptive pill could be helpful for me or not but not getting very far!

Daisy, I noticed you were dusgnosed. Eds 2. I wonder if there's a lot more impact from hormones in your case?

Also what have you been doing to strengthen? In only really finding swimming helpful at the moment, which I can't do much obviously with a little one.

I'm considering trying some weights in the house and cycling.

I found this link useful reading particularly the bit on physio Etc impact.

Lots points to pilates (which i find horrendously boring!!!)

hypermobility.org/help-advice/hypermobility-syndromes/jhseds-hm-clinicians-guide/

I do have periods, but they've been light and irregular, though I've just had one of the most painful of my life with a week long build up of joint pain and gastro symptoms. I was literally crying with period pains think it must be to do with cutting down on BFing ... I am planning to wean her now over the next month so I will update on how that impacts! It's just time I think anyway. Xx

Oh dear, I think periods post preg are bad what ever time they restart.

The only thing I've recently read which might help is Kellymom describes taking calcium and magnesium the second half of cycle - this is really to boost supply which drops then but she mentioned it helps with cramps etc - it could be worth a try?

I did this last month and though it could be the iron I was a bit better - probavly the iron though! I never get actual period pain though, just joints.

I've just found this page - v helpful. Been trying to work out if tens will help with muscle cramping, they recommend vibrating massager

hypermobility.org/help-advice/pain-management-2/pain-relief-techniques/

I already supplement calcium + vit d and iron as I am in the early days since Celiac Disease diagnosis also and the breastfeeding. Have set a date to stop now but don't know how that's going to go as my DD loves her Milkies! Magnesium is bananas isn't it? If so I eat lots of those because DD takes one bite then decides she no longer wants it... Lol x

In the last 6 months I've acquired a regular menstrual cycle for the first time in my life (had PCOS so one every 6 months with intense pain was typical, then had two lots of bf for 1 and 2 years, then about a year after each ebfore any periods). Now the periods are painless but I get horrible spots and all my joints fall apart painfully for about 3 days, which never happened before.

I seem to now have bad reactions to almost all meds except codeine. Clarella - I have been accused of perversion for using a 'vibrating massager' on my shoulders... Vit D and iron may possibly be helping a bit. TENS is good for backache I found, but since pregnancy that's usually the one bit of me that doesn't hurt, which was confusing when I ended up in a back-care physio-led exercise class to try to get me back into exercise without injury. Injured myself, obviously... Though atually it was quite nice not being the worst in the class at everything.

I had written a long post but silly phone lost it.

Swimming is meant to be really good for joints. I hate it, though. Physio said pilates is the best as it helps strengthen without stressing joints and it helps you become more aware of your body and how it moves. I do some stationary biking too.

Hi there! I've been following this thread with interest. I've long thought I had HMS: prolapsed discs, SPD, very bendy fingers & toes (have def hypermobile hips as per physio) think I score a 6 or more on the Beighton though that's just me checking it out. Also things that have been discussed by you all, I can identify with: neck pain & headaches -only cured by anti-inflammatories. Awful muscle spasms & they were truly terrible in my last 2 pregnancies. I take magnesium on & off. I've had Pyhsio referrals lots in the past for various muscular injuries. I have flat feet & can only wear lace ups; my feet slide around a lot so I slip out of anything else & get cramps/numb toes lots. Go over on my ankles a lot. Have awful balance...I ache all the time in lots of places. If I do physical stuff-gardening/packing & moving house, I can barely move the next day. Does this sound like HMS? Is it worth going to my GP? What good would a diagnosis do? Can I ask if any of you have raised inflammatory markers in your bloods? (CRP/WCC). As it is I know my limits & buy anti-inflammatories. I think my 14mo may have it too. He's only started crawling & is seriously wobbly on his feet; can't pull himself up & if I hold him on his feet he collapses. Seems to have no centre of gravity.
Sorry for epic post!

Hi thestory, I too was skeptical at first, and wondered whether it's s thing. Partly as I used to do a lot of s martial art which is gymnastic like and yoga - but felt better for it if I was careful and swam etc. I've been self managing for years.

From what you say you are quite badly affected. I've only been like this (at this scale) since pregnancy, with slight issues in the past. As a child and teen I used to go through phases of constantly twisting my ankles, "going over" and was often tired. But I found exercise helped on both counts so it's not been an issue.

When I first mentioned it to a new GPs (was struggling to physically get to my old one) they did say it really could cause a lot of problems. Addisons had to be ruled out first but eventually I got the rheumatology referral. They checked muscle enzymes as well as the things you mention - these were clear, so it is 'just' hms.

I say just, I cant believe how hard things are now during the second half of my cycle.

Where a diagnosis helps is - access to nhs physio (which had been excellent as fatigue is part of it and I needed CFS style pacing) - she's given me a splint and shown me taping across my back which has been invaluable with a toddler! I've now got a theraband to stretch leg muscles which are tightening too much and causing back ache. I meant to ask to try a tens.

I've also read a lot - Google Rosemary keer physiotherapist, she's an expert physio on hypermobility. I'll post an excellent link. The hypermobility society is great and it's on arthritis uk too

Regarding your Lo id definitely get the referral - maybe ask for both to be seen? It's inheritable.

I say this with my Sen teacher hat on - plus my niece is hypermobile and possibly add in the states, but they picked up on the hms first and intensive physio has made a huge difference. The earlier the better for him, then also informing nursery, school etc. He may need extra support or awareness of his needs at school - this is as he may find things like writing tough physically. I'm aware (now I'm a Sen teacher) that some children are a little bit hms and struggle at school. If it's highlighted then the teachers can make adjustments for them and TAs can give extra physio (if needed).

He may be fine of course but imo the more input if needed, and earlier, the better. Better to say a child has improved and can be discharged than try to make up lost chances.

Niece is ASD not add

I found this link the most helpful thing I've read to help me understand how it can quickly become very debilitating.

www.londonhandtherapy.co.uk/wp-content/uploads/2010/04/Ch09-143-162-9780702030055.pdf

www.rheumatology.org.uk/includes/documents/cm_docs/2012/1/1525_sig_heritable_disorders_of_connective_tissue.pdf

Can I join in?

I was diagnosed at 19, previous to this we thought I had infantile arthritis as this was the only possible explanation we'd been given (when both my hips subluxed and I was taken to a&be fitting at the age of 3) I'd had a good 6 months of them trying me on stronger and stronger meds and taking blood tests before they sent me to a rheumatologist who told me off as soon as I walked in the room for not disclosing my hypermobility to my doctors much to my and my mothers shock as neither of us had heard of it up to that point!

It mostly shows up in my hips, and I'm constantly doing my wrists in, when it's really bad I can get out of bed in the morning and fall flat on my face because my hips change their mind about holding my weight.

It's much worse when I'm on hormone contraceptives. It's much worse when crappy nurses get my tramadol stopped because they're worried that I might get addicted (went from working 5 days a week to working 2 because I couldn't physically cope on the useless cocktail of 13 tablets a day the tramadol was replaced with)

During my first pregnancy my symptoms vastly improved but during my second they got much much worse and I was pretty much bed bound For most of the 3rd trimester.

DD shows much of my HMS clumsiness and bendyness but at 2 it's hard to tell If that's because she has the condition or just because she still has tiny person flexibility.

I had 2 very fast labours, the first being about 25 minutes in total, the second being 3:30 hours for first stage and 4 minutes for second, both times the baby came in 3 pushes and it's been suggested stretchy collagen could be to thank for that, but I'm bringing it up with the geneticists to get their opinion when they come to see the newborn in a few months.

Another one here.

I went to see the lady at London Hand Therapy (where one of the above links is from) and she was great at getting splints for my fingers and thumbs.

I'm not that bendy any more, but have lots of the other systemic symptoms, mildly. It's been good to know that there is a connection between it all, though I am thankful I'm not more badly affected. Walking without pain in my feet/ankles/back is my biggest problem, and just muscle tension everywhere, both which make exercise and hobbies hard.

I think it must be horrible having it in the smaller joints because there's so little they can do to help. My physio said they don't have any exercises for wrists and just gave me a splint. It does help a lot.

Two things I'm wondering: can anyone recommend a baby carrier/wrap that doesn't put too much strain on the shoulders? I have a Moby, mei tai, and a Wilkins. Don't use the latter as it's too much of a faff to put on and find that the mei tai leaves me sore. I like the Moby but I think the baby doesn't enjoy it very much.

The second thing is about driving. I'm supposed to be learning so I can get my UK licence asap but I get sore arms and wrists. Any suggestions to minimise this?

It might be worth going to see a hand therapist/occupational therapist. When I went (to the place linked above), the hand therapist gave me various exercises with putty, stretches, etc to help hands and wrists, as well as advice on other activities (and the splints). I think she would have had a lot more ideas if there'd been time, but I only went a couple of times as it was very expensive. She's an expert in the field though, and it was money well spent, as often the advice is not actually that good if you see someone who doesn't really know about the condition. I don't know how easy hand therapists are to find though.

Grouchy I've found that the wider the mei tai straps the better esp in a front carry. I have an opitai and it led me to asking the physio about strapping shoulders in a similar way.

Padded straps too

I used to find the boba quite good on shoulders when he was smaller, again if in a front carry

I just read this and found it interesting

www.ncbi.nlm.nih.gov/m/pubmed/7789917/

Clarella, the you so so much for taking the time to answer me & post those excellent links! I'm so much more informed now. I believe my dad has HMS & therefore it's very likely my son has it too. I will go to my GP, though I feel like a 'worried well' person (I'm so paranoid they'll label me that I've made & cancelled an appointment already). I ache & I do feel impacted by all my aches daily, but I'm able to function & work so 'ok' really! So many of those phrases on the first link are ones I've used to my DH lots "I feel like a 90yr old" especially. I'm so so tired all the time & have constant brain fog & have often felt that it wasn't just our 'normal' busy life making me feel like this. Also, I'm interested in finding out what I can do to limit the effects HMS could have on me in the future so will start taking Calcium. I already take Centrum for Vit D.

EDS III here. Dx aged 22.

I work as a doctor. It makes operating and other tasks painful.

I'm in so much agony today.

End of whinge. ??