Joint hypermobility syndrome and mobility

[IrritableBitchSyndrome]

I'm only 41, but my knees sublux so frequently now I find it hard to get out of the house. I have an almost 3 y o DD who I'm scared to walk to pre-school in case I end up a crumpled heap half way and she walks away and I can't go after her. Is it stupid/ott to think of getting a wheelchair? I just keep thinking it will get better with physio, orthotics etc, but I'm almost housebound at the moment. Any advice?

Hi!

Thanks yes - I've learnt a lot about vit d. Basically anything that the lack of equates to muscle weakness I think it's wise to think about - vit d is a big one.

I'm taking 3000 spray from h and b now. Somewhere I found out relative dose v weight, sometimes take x2 as I think my max was 9000.

I'm not entirely sure if I need as much selenium as am totally reliant on thyroxine but I'll check that link out.

Is potassium iodide aka iodine?

I also don't need that as the thyroid gland needs it to make t4 and t3 (and I think it's in my medication) and mine is dead.

But yes it's important to be aware of iodine in diet if your thyroid is normal. In fact I know some people researching this area and suspect there will be new guidelines/ food supplementation in the future. (As in us)

There's severe deficiencies amongst teenage girls and pregnant women, esp young pregnant women. Affecting babies development.

It's not stupid, but might not be the most practical solution for getting about with a toddler.

I was diagnosed with HMS at the same age as you and it was stressed to me that I must, must keep as active as possible. I do feel it, if I don't exercise. I ache more, injure myself more and fall over more if I've had a day or two lazing around the house. Perhaps strengthening muscles to support joints keeping up your activity levels is something to discuss with your physio.

And reading on, I see your knee has been quite badly injured. I think you would find a scooter most useful with a toddler.

Yes I have found the same. This really was half the impact of the thyroid issue (fatigue) thus not being active.

I know not everyone can (I don't think it would be good for you op) but I do find skipping helpful and strengthening and less impacting than jogging. But I'm not EDS.

I have found 'the pain toolkit' website helpful actually despite the guy clearly not having a clue what it's like to look after a toddler as it talks about keeping active but pacing when dealing with fatigue, flare plans etc. I find the step by step approach helpful.

I found TENS useful to alleviate the burning in my knees, for a while, but after a few uses (typically, after I handed back the one I had on loan and bought my own one, exactly the same!) I began to find it irritating.

You have to be careful with Vit D as it is possible to overdose and the side effects are similar to defict irrc.

Argh just typed long reply, on phone, then accidentally refreshed page and lost it all!

Clarella - yep, I'm sure you're well informed on hypothyroidism and know what you need and don't. The book I'm reading warns not to take more than 1100iu vitamin D as the benefits are lost at higher doses and it starts to cause overload problems. The body naturally stops synthesising vit D from sunlight at a certain blood saturation, but can't do the same balancing act with supplementation. I learned this the hard way last year by inducing a full on hallucinatory migraine by taking 3000iu. Evidently too much in one go for me. Oops!

Ouryve - yes, the focus of my physio sessions are to protect joints by strengthening surrounding muscles and core, which was going very well. I also find that a couple of lazy days - in bed with a flu bug or recovering from injury, often causes a domino effect of further injuries. It only takes a few days to undo all the hard work!

Ohhhhh hello!!!! Both me and DS 6 have been dx with EDS type 3. DS 8 and DD 4 have JHS.

Morning SometimesIThink. Good username! Welcome to the thread.

SometimesIThink... how did you get diagnosed, by the way? Did you have to go through genetic testing with a specialist centre, or were rheumotology able to diagnose you? I ask as I have a sneaking suspicion that the rheumotology consultant I saw was a bit rubbish!

Also, what's the difference between eds type 3 and jhs, and what's the difference in terms of how you all manage your conditions, symptoms, everyday impact and practicalities etc? Sorry for all the questions!

Skipping? Skipping is still very high impact. Swimming is the exercise most recommended for low impact. Which sucks as I hate swimming. Also was recommended to do pilates or yoga to help strength/stabilise the joints by the rheumotology specialist i saw.

I agree it's high impact. However I spent 35 years doing what the hell I liked sports wise (many years jumping about bare footed in capoeira, cycling to work, swimming) and all only ever helped me until I started getting lower back pain, due to bad posture, but found the core work in Forrest yoga sorted that out. And I've found now I'm at a certain strength level skipping definitely helps me personally. Especially my shoulders some how. My wrists used to give me no end of problems until I started streghtheing them through handstands and monkey crawling at capoeira. I had no idea about any of this but noticed the weight baring things helped a lot.

But I've noticed that although my knees do bend back and I had lots of ankle and foot issues as a teen the more I use them the stronger they are. And I have no issues there at all. Extremely flexible ankles and feet but now strong. I try to do weight baring in my hands and arms too - lots of this in capoeira and I know I was better upper body wise when I used to do this.

Hamstrings are a big issue for me.

I think this is the 'thing' though everyone is different.

After pregnancy I found I could put hands flat on floor, couldn't before. I think that over stretching has contributed to lower back issues.

Katy bowman has excellent advice on hypermobility and is bringing out a book soon. Eg how to strengthen shoulders through monkey bars the 'right' way.

But - yes there's definitely a much more fragile EDS type. Where none of this would be recommended. But low impact strengthening exercise is a must. Pilates, swimming . Possibly cycling?

I think this is a really good article

www.dynakids.org/Documents/hypermobility.pdf

It mentions no yoga but exception of hamstrings - this is exactly what I find. So all the yoga I do is leg and core stuff. And spinal twists, But I've discovered the yoga I go to is a very sensible one and they are very careful of arms, shoulders, lower back etc. Very protective of back, always tucking tail bone.

I went to an appalling class at a local sports hall and could see how some women were making their backs worse from over compressing in back bends.

I've been advised to carry on with pilates, avoid yoga as stretching and lengthening muscles is apparently the opposite of what I need to do, avoid stretching my hamstrings (I can put my hands flat on the floor but will always destabilise my knees by doing this. Every time. To the point where I now know to say 'no' to doing that as part of being assessed!). Swimming would be good if I could find a way to move through the water without a shoulder, knee, or hip joint coming out of place. Anything involving knee rotation whilst weight bearing, like aerobics or ski-ing, is a total no for me. My knees are no longer stable enough to run or dance, and my days of taking stairs 3 at a time in heels are behind me! My physio suspects cartlidge damage from years of repeated injuries. I am advised that low impact physio exercises designed to physically support my knees, and exercises to maintain and improve my core strength are the best for me. If I ask about anything more strenuous I am gently and professionally reminded of this. Clarella, I am sooo jealous of your range of possibilities! I wish I'd appreciated all the stuff I could do when younger. At the time I was just irritated by frequent injuries and my own clumsiness! Had I known what was to come I'd have enjoyed the dancing, running, swimming, yoga etc etc while I could!

Ooh... and the volleyball, and going to the gym on lunch hours, and all the days out with my kids, roaming about beaches and festivals and museums. The weeks at festivals, dancing with a toddler on my shoulders in a muddy field, then walking miles back to our tent. My poor little 3rd child born 20 years after her siblings has a very dull life by comparison. I can't even get her to preschool at the moment.

Wow... Clarella! That's a fantastic article! I read through the whole thing thinking... yup...yup...yup...yup. I will send this to all my family members who are as yet unable to fully believe that their debilitating seemingly unrelated health issues are part of the same syndrome. I will also send it to my DH, by way of explanation. I'm particularly amused by the number of times 'Irritable' crops up in the article. The Dr in question has evidently been paying close attention to his grumpy patients

I didn't mean to be boastful or gloating

I'm so sorry you're experiencing such pain and debilitation.

I am just trying to illustrate the wide range of hms and EDS types. For example I've been blythly ignoring the don't bf stuff after discussion with a local lactation consultant. There may have been an impact as hormones were suppressed but all my issues started when periods restarted! And as I say really pregnancy and thyroid and inactivity have been my triggers.

Yes I forgot all about that article; I found it on my phone after downloading Marie Kondo!

It's spot on. As much as you can be in such a wide spectrum!

Gosh I'm sorry - and this!

A wonderful mnetter put me in to this.

This this this!!!! This IS spot on.

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

I just noticed there's something on Amazon too by her.

I hadn't seen this before but is probably excellent. Though for physios.

I wonder if library would have it?

www.amazon.co.uk/Hypermobility-Syndrome-Diagnosis-Management-Physiotherapists/dp/0750653906