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 GrouchyKiwi,
How funny I have just been diagnosed with Hypermobility and thought I'd come on here to see if anyone had it!
I've just turned 40 but have been having symptoms for many years, worse in the last 10. I dislocated my jaw and knee a few times when I was younger. I mostly feel pain in my jaw, neck, shoulder, elbow knees and hips.

I've definitely noticed it's worse just before ovulation and periods as I guess the ligaments are softer then.

I also get quite bad headaches from the neck pain which I may have investigated as I've just read about Chiari. There seems to be a lot more to this condition than first meets the eye ??
I get really tired often and have to
pace myself through the day which is tricky with a 7,5 and three year old. I too noticed I had a lot of arm and back problems when the children were babies, with lifting and carrying them.

Glad I'm not alone though!

I have EDS type 3 (Hypermobility type). I have it more badly than most-serious fatigue, walk with a stick with wheelchair for long journeys, can't work fulltime, constant random dislocation of hips, dysautonomia/POTS etc. For me my periods have a serious effect on my ability to function. I suffer from menometrorraghia (very heavy, very irregular periods) which cause my joints and my insides to go haywire. Hormones have a serious impact on collagen and so us bendy people suffer then more than most. At my worst, when I was bleeding I couldn't get out of bed without fainting. I've found that the only thing that helps is the pill. I've been on the pill continuously since I was 12. It might be worth mentioning it to your GP, although of course it doesn't work for everyone.

Lottie Does it feel good to have a diagnosis? I really like having an explanation for all the weird things my body does, and the more I read about it the more things click and make sense.

unweavedrainbow That sounds really difficult to cope with.

Unfortunately I have other conditions that contraindicate for both kinds of Pill so that's out.

What happened after you got your diagnosis? Just wondered as my rheumatologist just said this is what I had and he'd refer me to a physio. He said check out the HMS website too. Apart from that I'm kind of left with a lot of questions. I'm Guesding GPs are not a lot of help?

guessing

Yes, my rheumatologist said the same thing but in the end I had to get the GP to refer me to physio. And other than a couple of rounds of physio nothing has happened.

Having the diagnosis has been useful for maternity care, though.

I'm 36 and got given the diagnosis at 34 following two bouts of severe SPD and not recovering.
I have problems with my hips/pelvis/knees and ankles. I can't use my feet properly.
Have minor problems with wrists and arms.
Have lots of neck and headache pain intermittently in a bout at the moment.

I've improved massively since starting expensive private Physio last summer.

Oh and yes discharged from Rheumatology and pmt increases pain , joint problems

Ooo may I join/ resurrect?

Just had a diagnosis yesterday.

I was diagnosed a couple of months ago. Pregnancy was horrible then I was still struggling around my daughters 1st birthday in the summer. I was going to the gym the day before my period the couldn't move for 2 or 3 days as Id damaged myself being extra bendy (I now know). I started a FT course as I had to give up hairdressing due to a wrist injury (I now know was down to repetitive strain on my hypermobile joint) and found I couldn't cope with pushing the buggy on nursery runs and carrying books, but especially typing long essays. I had to suspend my studies, and this was enough for the GP to take some notice (I also had to move GPs to get taken seriously). I have felt like it's been such a battle, yet when I walked into the Rheumatologists he diagnosed me straight away. I also suffer with dizziness, POTS, migraines, heavy irregular periods, anxiety and gastrointestinal problems which he said can all be related. My whole life I've felt like people thought I was putting on these 'dizzy spells' and 'joint pain' I was starting to believe maybe I was a just lazy/low pain threshold etc. It helps that I can say 'it feels like labour pains in my wrist and hand joints' that makes the drs listen! I'm hoping I will be able to return to college in September, with some adjustments, and get my life back, go out to work again etc. But right now I am take it slowly and building my muscle strength, as I know when I do too much that's when I cause myself injuries. So glad to have found this thread x

Hi Clarella.

Daisy That sounds very difficult. What kind of things are you doing to build your muscles? I've forgotten most of my physio exercises as I couldn't do them when pregnant. DD2 is now 7 months so I really should get back on top of it.

Hello, I have EDS III as well. Periods definitely make life more difficult, very heavy, lots of pain and fatigue.
I get lots of neck pain and epic headaches, which crescendo to migraines about four days before I'm due. Multiple dislocations and subluxations, POTS, kidney problems (severe, on daily chemo and steroids, probably for life).
I have just started the ball rolling getting my wonderful dd (5) a diagnosis. School have highlighted her gross motor skill inadequacies and she also sub luxes often, particularly in the arms and knees.
It breaks my heart that I have passed this shit on.

My number one piece of advice is to read up on spoon theory. It is so so true, and essential reading for anyone with a chronic illness.

I'm 20 and have EDS III. Not helped by the last 20 years of using my hypermobility to show off to everyone, and now I do performing arts I may have used the flexibility a little too much. I sublux often, and I'm having physio at the moment. My knees are the worst - my physio knows me as 'the one with the knees' they are in a constant state of being knocked back, I really struggle to stand 'normally'.

For anyone with severe hypermobility in your hands, Stabilo do great ergonomic pens. I can finally write essays without being in agony

I don't think I'm as bad as many of you but I've had fatigue on and off for years triggering mh/ anxiety issues. I once sobbed to my gp 'I have a phobia of tiredness!' But I also have hypothyroidism, no thyroid left tbh, which started around 20 so that's interplayed a lot (I now know)

I've had a body break down effectively since having my son (27 mo) an emc and thyroxine dosage issues. Muscles / joints really didn't behave well from birth. More recently massive muscle loss and fibro, rls etc. sensory issues, memory loss. Been bloody awful, not worked since oct. A combo of lots of things but - as gp and rheum say - underlined by hypermobility. Hypothyroidism really affects muscles if not treated well so I became massively deconditioned. Gp and I think sertraline hasn't helped, it messed up my thyroxine and may have affected muscles too.

I just learnt spoon theory; wish I'd found it years ago.

Before pregnancy Pain wise I found backs, hips and wrists were better when I got strong in my 20s and found a low impact martial art I really got into, then swimming on top and then a yoga which is quite pilates based. And cycling. I didn't realise I was effectively keeping everything together by doing all this, though would go through phases of back ache, hip etc. I guess I found the things which helped myself. My job is active - teaching Sen children which probably hekps - ish - if I'm strong. It's very physical. I find sitting in chairs positively tortuous these days!

I was tested for Addisons in November but I think it made things worse and then was given iron tablets and taken off the sertaline about 7 weeks ago and that's when I've begun to start to get somewhere. Sometimes I wonder how much is the hypothyroidism but I'm clearly bendy at every joint, no stretchmarks and stretchy skin and the pain / desire to stretch constantly drives me nuts. And periods. Awful. I don't get period pain but my joints are now a nightmare! And it's why small dose wobbles have affected me so much in the past. I'm quite skinny too.

Iron is definitely helping and an excellent physio showed me how to tape my shoulders but mainly talked about spoon theory, pacing (CFS diary) and is going to look at flare management next time. I know which exercises help me (mainly swimming and yoga plus core stuff) but I don't have the energy nor muscles yet.

I didn't know about subluxing - still not sure what it is! - but I think a lot does. Left hip definitely. And I pop and creak and crack a lot. I've only ever dislocated toes - from just wiggling them.

Ive found reading stuff by Rosemary Keer really helpful.

Sorry it's s bit epic!

Quick q: does anyone find tens machines help aching muscles - but more specifically really tight muscles? I think it's the cramping tightness that is my biggest issue.

I've not tried TENS but for the crampy tightness I use heat. I love my hot water bottle.

It is very interesting how many of my little issues are explained by HMS. And I do find it odd how hard it is to diagnose. Years of "it's just growing pains" from the GP, and people thinking I was just lazy for hating running and hill walking now have proper meaning.

I need to remember to make extra meals in the middle of my cycle. I'm due in the next few days and things are ramping up again: dizziness, swollen joints, tiredness, etc
No pain yet, thankfully.

Oh, and thanks for the advice re Spoon Theory, TheGonnagle. It's a really good way to look at it.

Yes to dizziness during cycle, but it's all worse since preg. Good tip re making more meals mid cycle; that's been a big issue recently.

I'm worse since my second pregnancy too.

I've found this website extremely valuable, btw: hypermobility.org/

I have EDS Type 3, and was only diagnosed in my late forties. I was told I had fibromyalgia for 20 years. I can really only function with heavy duty opiates....I have a constant limp as sometimes EDS can go with arthritis so I have that joy too.

I am worried I have passed it on to my children, but they do not look too bendy - however they do have dyspraxic type issues.

Sadly it has affected my eyes - I have cataracts despite not yet being 50 and my retinas are thinning. Also my bowels - I hold too much poo in my colon so it has gone baggy and is failing to work properly.

I am in a right bloody mess!

Hugs power, that sounds tough.

I've found the hms site helpful. I like the forum but really could do with accessing the 'womens bit'. Need to post more!

One thing which bothers me (though no professional has said yet) is that in arthritis uk and the hms site it says bf affects it - at least pregnancy does and the effects last during bf.

I'm not sure this is right, a lact consultant I know said she didn't think so (and she has hms 3) as prolactin only affects lactiferous tissue. My own experience is it's all got worse since periods returned.

I've personally found bf longer to be helpful as 1. It's easier to deal with tantrums and 2. I get a chance to rest and 3 it staved off periods. Unfortunately for me when they came back I'd lost so much muscle from thyroid issues it made it ten times worse.

Has anyone else felt this?

I'd be very interested to find out Clarella, as I am still breastfeeding my 21month old and often in pain. I was even considering weaning to try and help my symptoms, as it has been terrible since the very start of pregnancy. I actually went to the dr with joint pain and did a pregnancy test when I was there! If so it may be time for my little lady to get her milk from a carton instead! My pain is impacting on my parenting, and there's no point in being a breastfeeding martyr! If any one can shed some light, as if it won't help I will wait for my daughter to be more ready. I have Eds 2. Thanks ?? x

Daisy -from my research - it's the effects of the pregnancy which last upto 2 years and probably the heavy lifting. And within the pregnancy the relaxin, oestrogen and progesterone, especially the last one. It's tricky as on arthritis uk and hmsa they both say bf affects it, however as I say our lll leader (consultant) who has type 3 I think says prolactin only affects breast tissue.

Have periods returned? It's periods that are causing my issues and iron levels.

I'll post a site for pgp which also says bf is not to blame and imo there's links to pelvic issues and whole body hms. Jpint wise It's about the strength of muscles supporting your joints, in simple terms, though of course it's an issue with all types of tissue.

I'm struggling to find actual research that says bf actively affects joints.

Pages about bf and hormones

www.pelvicpartnership.org.uk

I was diagnosed with HMS a couple years ago, plus some muscle issue that means I'm not actually hypermobile as my muscles are too tight - I just injure myself rather than dislocating joints. Usually when doing recommended exercise as my balance is also non-existent.

Had very bad SPD (months of wheelchair use/bedrest) which was aggravated by dcs getting to about a year and being heavy. Now dc2 is 3 its just a dull ache, possibly worse around period time. Stopping bf didn't seem to make much difference.