Does HMS make it a worse kind of fibromyalgia?

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Does HMS make it a worse kind of fibromyalgia?

Postby Fairytaz » Wed Dec 31, 2014 12:47 am

Hi everyone

In my path to find out more about fibromyalgia and anything else that may be making it worse, I have heard this thing my mums physio told her. I have hypermobility syndrome and my back is the worse part of my problems but for some reason I've always kept the two conditions separate in my mind, like, hypermobility syndrome is painful joints and that's it but by this point, I have so far not looked up hypermobility syndrome at all and just let the doctors tell me and put the rest of my issues up to fibromyalgia.

I've heard that hypermobility syndrome apparently makes fibromyalgia like so much worse in many aspects, possibly a new idea, I'm not sure. Like hypermobility syndrome causes additional stuff. My question is, has anyone else heard anything like this, if so, have you got any webpages I can go and have a look or some info you've heard?

Ps. I know this may sound silly but I hope you know the point I mean

Thanks

Tanya
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Re: Does HMS make it a worse kind of fibromyalgia?

Postby dazzleship » Wed Dec 31, 2014 11:23 pm

hi

well I've very recently been diagnosed with hypermobility syndrome / ehlers danlos type III and as far as I understand it, its not just joint pain (although that is very real and very painful :( ) but it can cause fatigue as well

and the one I've got (there are different versions of ehlers danlos hence why mine is called 'type III') also means my skin is stretchy and wounds don't heal properly. also the fact that anaesthetics don't work well for me I believe is a result of the hypermobility syndrome too (rather than the fibro). not to mention of course the fact that my joints are floppy and move out of place.

when you think about it, it makes sense to think of the two conditions as related. obviously the hypermobility came first (cos we're born with it :-) ) and if that means the ligaments around the joints stretch too much, this means over time our bodies will get sort of pulled out of place slightly. and this must put strain on not only the ligaments and joints but on the muscles as well. so perhaps that's where the fibro comes in, when the muscles have had to work too hard? just my theory on it all :-?


anyway. I've been doing some research about it to try to understand what this thing is, so here are a couple of links that hopefully you find useful:

http://hypermobility.org/

http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx

hopefully these might help :-)

and you're not being silly at all. you're just looking for answers and believe me I understand. there's nothing wrong with wanting to understand what it is you've got.

best of luck on your journey.
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Re: Does HMS make it a worse kind of fibromyalgia?

Postby Charmed » Thu Jan 01, 2015 3:54 pm

Hi Fairy and Dazzel,

This is extremely interesting! I also have HMS and the idea of things being over stretched over the years makes a lot of sense to me. I had never linked the two conditions, but this is making me wonder. Maybe because people with HMS/EDS III have been so bendy throughout our lives, now when we are older the Fibro is making joint pain more, if possible, severe?

My mind is a bit foggy today, :crazy: so please forgive me if this sounds silly. Trying to get my mind around this concept. But this would certainly explain my joint pain.

You know I read on here about some of the help people who get referred to consultants, pain clinics and various therapies, I've had nothing! All I seem to get is repeated meds, painkillers that don't even work. I think it is time to change my GP?

Any advice would be welcome. :oops: It has taken me 20 mins to type this as my fingers are so swollen and my knuckles are painful, but I have no idea why.
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Re: Does HMS make it a worse kind of fibromyalgia?

Postby dazzleship » Fri Jan 02, 2015 11:35 am

Charmed wrote:Maybe because people with HMS/EDS III have been so bendy throughout our lives, now when we are older the Fibro is making joint pain more, if possible, severe?

hi Charmed

no your theory doesn't sound silly at all.

if you're not getting much help from your GP I would suggest making one of those 'double appointments' (so you get more time to talk) and take with you a list of your main symptoms, and perhaps even mention that you think the two conditions might be related, and see if you get anywhere. sometimes you have to give more info to GPs before they'll help. and failing that, yes a new GP :-)


now to the theory. again to take my example (not cos I'm just wanting to talk about myself but simply cos it's the only example I've got to work with..)

I have apparently been hypermobile all my life. but up until two and half years ago (approximately) I did not have fibromyalgia.

up until about one year ago, my shoulders and knees did not move around in their sockets and feel like they were moving slightly out of joint (subluxing I think it's called).

in the last few months these issues have gotten worse, as has the joint pain. I get excruciating pain in my ankle joint, and in my hips (used to only be my left hip, now my right hip has started playing up too).

the point I'm trying to make, is that if I've been hypermobile all my life, why all of a sudden in the last few years am I having problems from it?

the only reason I can think is that it's because all these years I've been inadvertently stretching things too far (cos I didn't know any different) and it has taken it's toll and now I'm all loose and stretched out of place :-)

the theory makes sense in my mind - what does anyone else think?

but on a lighter note:
"if you're bendy and you know it, clap your feet :mrgreen: "
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Re: Does HMS make it a worse kind of fibromyalgia?

Postby Fairytaz » Sat Jan 03, 2015 12:05 pm

Wow, thank you for this discussion. Your theories make so much sense. I've been bendy all my life. I can do odd things with my eyes, my joints go so much further, my back cracks so much and is so painful I feel things are rubbing or something. Recently, my fingers have kind of got stuck painfully and couldn't move, all the knuckles. I'm so frightened I'm gonna be like my mum, her fibro and hypermobility plus other conditions are genetic. I'm showing signs too.

Has anyone ever improved their stability of their joints with stretches and muscle exercises around the joints? A physiotherapist gave me some but my joints still decline. Working in computers, I thought the exercises for my fingers was covered too but they now don't function right.

Is hypermobility syndrome the same as EDS type 3? Is it just doctors preference on which is formally diagnosed?

Also, another quick question while I'm here, does anyone here experience constant lifeless fatigue/ exhaustion, constant brain fog and constant heaviness? I keep trying to do a little exercise cos I think it will help as doctors said but it only makes it worse. I look grey and have really dark circles under my eyes. Suddenly hit me a few months ago even though I had fibro since I was 17/18, I'm now 25. The you tubers with fibro and hypermobility don't have them this bad
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Re: Does HMS make it a worse kind of fibromyalgia?

Postby dazzleship » Sun Jan 04, 2015 9:35 am

hi fairytaz

oh my knuckles get stuck too - sometimes if I've been sitting with my head leaning on my hand (if you see what I mean) when I go to move my hand later, the fingers are all stuck straight out and won't bend until I make them bend with my other hand :roll:

my elbows tend to get stuck too, if I've been lying in bed with my arm straight out, invariably it locks into place.

I don't know about exercises to stabilise the joints - I haven't had anything like this specifically to help hypermobility. maybe someone else will have experience of it though.

the rheumatologist who diagnosed me referred to it as "benign joint hypermobility syndrome or ehlers danlos type 3" (she used both terms) so that leads me to believe the two terms are interchangeable.

although I think the EDS part of it comes from the fact that I don't just have the hypermobile joints but also the collagen problems (stretchy skin, wounds not healing properly, etc). so to some extent it probably depends on what range of symptoms you have with it, if you see what I mean.
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Re: Does HMS make it a worse kind of fibromyalgia?

Postby Fairytaz » Sun Jan 04, 2015 5:46 pm

Hiya again, thanks for your reply. Ye my skin isn't as stretchy as some eds type 3 people I've seen and although I heal slowly it's isn't as slowly as the eds type 3 I've seen either so maybe just hypermobility. My rhumatologist never mentioned eds to me so maybe there is some sort of a difference. The only symptoms I accociate with the hypermobility is the smooth velvety skin, bendy joints and the cracking and stiffening pain. To this day though, I don't think I've looked up symptoms of HMS, I've just been asked questions by rheumatologists and my husband looked it up
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Re: Does HMS make it a worse kind of fibromyalgia?

Postby dazzleship » Wed Jan 07, 2015 9:16 pm

I think you're right that the two are maybe differentiated by the collagen symptoms.

I only know what I know about it from googling :-) in fact I asked my GP about it today and she wasn't sure so she looked it up on their search program and it didn't even find hypermobility in the results :roll:

We have to do all the hard work ourselves with investigating this stuff :mrgreen:
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