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Joint Hypermobility Syndrome

(20 Posts)
user1485097822 Sun 22-Jan-17 15:18:29

Hi all, hoping you can help!

I've recently started a blog on the above and am in need of feedback. See hypermobility2017.wordpress.com.

This is a condition which affects both pregnant women and youngsters, but at the moment the main treatment suggested by the NHS is paracetamol and exercise. With this blog I wish to expand on what's causing this condition in the first place and how to effectively treat it, even if your doctor says there's nothing further that can be done.

Thanks for your attention,
Roz

reallyanotherone Sun 22-Jan-17 15:27:49

I'm confused. You give the impression you're a health researcher, so have an understanding of basic medicine.

But.

It's caused by genetics. So unless we can come up with a way to cure germ line issues, there is no cure.

Exercise is an effective treatmemt, as the muscles become strong and take up the function of the over-elastic ligaments, and hold the joints in place.

It can affect adult men and women too, not just youngsters and pregnant women.

So what exactly do you hope to achieve with the blog?

user1485097822 Sun 22-Jan-17 16:04:57

Sorry, I should have specified constructive feedback from open-minded peeps! grin)

Yes, I have an understanding of basic medicine, enough to know it's a very complex area. When it comes to genetics, yes conditions can be inherited but there are conditions where the environment also plays a crucial role. Not all cases of hyper mobility are caused by genetics, some cases appear to develop during adulthood following an injury.

Whilst exercise can be effective, exercise can also lead to injuries if sufficient support and knowledge is not in place, this is where a good physio can play a crucial role. Having strong core muscles are particularly important.

Yes, I know this is a condition which can affect men, women and people of all ages. However, I'd understood mumsnet focuses on pregnancy health and that of youngsters which is why I highlighted this group above

99point9FahrenheitDegrees Sun 22-Jan-17 16:12:24

Perhaps you should post more on your blog first so if we are interested we can see what you're talking about. Right now, with the promise of revelations and the need for us to be open-minded, it reads like a slow-burn Juice+ sales pitch.

There is quite a bit known about hypermobility, so I am a bit puzzled by your approach, although I would be interested in reading any new information or research you have found.

99point9FahrenheitDegrees Sun 22-Jan-17 16:13:09

Sorry, not meant to be sarcastic though it could read that way. Genuine feedback.

reallyanotherone Sun 22-Jan-17 16:40:07

Not all cases of hyper mobility are caused by genetics, some cases appear to develop during adulthood following an injury

Do you mean joint specific to the injured joint, or are you claiming HMS can be caused by injury? Can you site source?

Your statement about correct exercise and a good physio is nothing new either.

I agree with pp, at the moment you read a bit like you're about to claim you can cure HMS with juice plus or aloe vera. Especially the "constructive feedback only" comment- do you mean "only say good/nice things"? hmm

Fidelia Sun 22-Jan-17 16:46:51

Ok, some first impressions:

- You don't acknowledge Ehlers Danlos - which is genetic and there's a test for it. It's potentially dangerous both emotionally and physically to suggest that this could be cured by extra magnesium supplements and the right exercise. And by ignoring it, you also ignore the slow healing issues (ie form cuts and operations) and other more serious complications such as heart complications etc that face people with some versions of it.

- Where is the research on which you're basing your blog? As a medical researcher you'll know that a sample size of 1 is simply not robust, even less so if the evidence is anecdotal, and the researcher is also heavily biased due to being that 1 person giving evidence.

- You also admit lying on your blog (you say your GP is good, to get out of a consultation you were in...whereas you slated them in the previous blog post) so it's very difficult to trust your anecdotal evidence anyway.

- It's quite difficult to read the account because you do seem to slate everyone, and seem to believe that only you could be right. That black and white thinking is a concern.

lingle Sun 22-Jan-17 16:59:26

Ros, I think it's great, but that you don't have complete clarity yet on what kind of expertise you have and want to build up.

There is always space to share experience of conditions and experiences and to build up powerful expertise as "expert patients". This can result eventually in real influence.

But to me it reads as if you were claiming medical expertise. If you do that you will always be playing on the other side's pitch IYSWIM.
Good luck.

LivingInMidnight Sun 22-Jan-17 19:43:21

I think you might be better off spending some more time learning about HMS before writing about it. I say this as someone with HMS.

I'm a bit confused about the whole thing tbh.

EverythingEverywhere1234 Sun 22-Jan-17 19:49:20

As someone with HMS, I agree with Living. You don't sound like you have a clue... at all.

PigletWasPoohsFriend Sun 22-Jan-17 19:54:45

As someone who has a close family member with HMS I agree with Living too.

user1485097822 Sun 22-Jan-17 20:29:45

hi guys,

so just read over the comments and thanks so much to those who have been constructive. I'll review what I've written with this in mind. From a few things said there's obviously been some misunderstandings which I'll try and clarify. By constructive I mean giving comments I can work with to improve whats on there, not sure why anyone would see this as wanting good comments only?

I'm new to blog writing and still have a way to go with this - balancing my personal experience with that of people I've spoken with and research I've read is a challenging thing. It's said there's already a lot known about HMS but when the medical advice is keep active, rest and take paracetamols, I think this can be improved.

This time last year I was signed off work for 2 months exhausted and spending most of my time in my bedroom. Yesterday, I climbed up 2 munro's. I'm not attempting to make any money from this, only to reach out to those in a similar situation and if one person benefits from something I write, I'll feel that this blog has achieved something positive.

RandomMcRandomface Sun 22-Jan-17 20:40:00

I have HMS as well and find I can manage it with exercise and strength training/yoga and panadol though.

Problem is - it's not a quick fix and isn't easy, so I understand why people would want to find easier, quicker solutions. But .. it takes a long time to build up the muscles so they are strong enough to support my hypermobile joints. In my case it took about three years to be able to run again after my initial diagnosis, but with time and be being careful to do yoga or strength work a couple of times a week, it works.

Mehfruittea Sun 22-Jan-17 21:00:34

I have EDS JHM and fibromyalgia. I'm still in that stage where I would do/try/pay anything for a 'cure' or even 5% improvement. And yes I excercise. I'm vulnerable but educated. You need your blog to reach out with credibility and build trust.

OhWhatAPalaver Sun 22-Jan-17 21:21:23

Hi Roz, your symptoms sound a lot like mine. I'm curious to know if you have children or not? I have noticed a very definite decline in my health postnatally and I'm wondering if it'd hormones or nutrition related. I also get the 'ball bearings' under the skin thing, which is typical of Elhers Danlos, but I only get the while pregnant or breastfeeding and then they slowly disappear.
I'm currently 7 months postnatal and feel awful. Willing to try anything at this point so I will be purchasing some magnesium to see if it helps. Waiting on bloods to come back from gp this week, while I hope they all come back normal, I would also like to know what the hell is wrong with me!!

bigmouthstrikesagain Sun 22-Jan-17 21:40:39

Hello - S, I am definitely a genetic "sufferer", always have been bendy clumsy and prone to aches and pains (and a bleeder), I have back issues that have occasionally landed me in A&E, also have to take NSAID pain killers regularly. I am considering going back to my GP for a regular prescription of Naproxen, I also need to take up Yoga or at least continue to build on core muscle strength.

I have read the blog - such as it is and I am not really sure what you are aiming to achieve. There is plenty of information about JHS available and I haven't found it hard to understand or access. There is limited support on the NHS but aside from funding pilates classes I am not sure what further support I would require. I can diagnose my ailments easily enough and I tick enough boxes ('double jointed' in wrist/ thumbs/fingers/ elbows/ knees/ can put hands flat on floor despite being unfit, slightly porky and over 40!) to have no doubt whatsoever that my aches and pains are down to wear and tear on my overly flexible joints. (Putting my legs behind my head used to be one of my party tricks blush!)

I do get tired and I know that more concerted effort towards regular exercise and good diet/ less booze etc. etc. would contribute to well being generally, but that applies to everyone!

I don't think there is a break through in JHS understanding coming - but maybe I am old and cynical. I am glad you are feeling well and climbing munro's (??) op - live long and prosper, but as it currently stands your blog holds little interest for me. Sorry.

user1485097822 Sun 22-Jan-17 22:01:17

thanks again to those above - have now updated the Home and About page so that this is now a blog about my own experience of HMS. Writing about it is also a therapeutic experience for me and seems that some angst has been sneaking out which some of you picked up on.

Thanks to RandomMcRandomface, Mehfruittea and OhWhatAPalaver for your messages just above. Sorry to hear you're having a tough time with HMS too.

Yes, I agree finding exercise which works for you is crucial and personally I do a Yoga with Adrienne class on most days. Being aware of limb alignment is really important too. Yes, it takes time and dedication in an age where a lot of us want to take a pill and be fixed a few days later. I'll write more on my experience of this soon.

I also feel vulnerable about having HMS, but less so then before. I find sharing my experience with others is one way to build on this. Hopefully the changes I've made above will help build credibility and trust but let me know if there's anything else.

OhWhatAPalaver, I've not been pregnant yet so don't know too much on this area, only that there are women who are diagnosed with HMS during pregnancy partially due to the release of relaxin. Just a quick one on adding minerals into your diet - I recommend Blackstrap molasses (~2 tbsp in the first half of the day) and dead sea salts in the bath as a starting point. It'll likely take a few weeks to build up levels again if you are deficient so be patient with it and find what works for you. All minerals are important, and getting the optimal balance. Blood tests are unlikely to show a mineral deficiency as so much is stored in your tissues. It's a tricky thing to test for. Good luck with the test results.

OhWhatAPalaver Mon 23-Jan-17 00:24:47

Thanks Roz, I'll try those. I've heard of transdermal magnesium being used, have you any experience of this?

lingle Wed 25-Jan-17 12:18:20

I think it's better now - good luck

zeeboo Wed 25-Jan-17 13:45:04

I'm sorry Roz but this is utter tosh!

"This is a condition which affects both pregnant women and youngsters, but at the moment the main treatment suggested by the NHS is paracetamol and exercise."

It affects children of both genders, and adults of both genders whether pregnant or not. And the NHS offer a great deal more than just paracetamol. I have a diagnosis of bjhms/eds3 as do all of my children of differing genders and I can assure you we aren't just offered paracetamol hmm

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