Hyper Mobility Syndrome (HMS)

Is this supposed to hurt?

20 messages
05/08/2012 at 03:51

To cut a long story short (as I'm sure you don't want to read it!)I have back pain which started just over 2 years ago and has become constant back pain rather then just an irritating niggle. After some blood tests and an MRI scan I was told I have Hyper Mobility Syndrome and fibromyalgia.

I had wondered if I had osteoarthritis in my back as I was told I had the early stages of osteoarthritis in my knees and ankle as well as having osteopenia (early stages of osteoperosis) but the MRI scan I had was all clear.

I was always under the impression being hyper mobile just meant you were more bendy, HMS I had just thought was just a posh way of saying "you are hypermobile" and shouldn't therefore be painful. Due to their being a link between being hypermobile and osteoarthritis (because joints get worn down at a greater rate then otherwise) combined with being someone who runs and also due to the already weakened bones I have I had just assumed osteoarthritis and it certainly does meet up with the symptoms but its almost definatly not this and apparently HMS.

 

Is there anyone else out there with HMS? Can you help me with my 2 year long understanding of my irritating/painful/at times debilitating back pain?

07/08/2012 at 17:44

If you have fibromyalgia, isn't it more likely to be that that's causing the pain?

I have a friend with fibromyalgia and she's pretty much in constant pain. Various parts of her body at various times, but overall constantly bothered by it.

I'm hypermobile and it doesn't cause me any pain in and of itself. I have osteoarthritis in one shoulder and the surgeon who scraped it out told me that being hypermobile meant it was easy to constantly overextend and so accidentally damage your joints, but that it didn't cause most people any bother at all.

07/08/2012 at 21:04

I'm hypermobile, and that doesn't cause me pain. My doctor thinks I also have fibromyalgia, and if that is what it is, then that certainly is painful (I suffer mostly in my back) but in other places at other times. Arthritis has been ruled out for me.

What has your doctor said to you about this, and managing your pain? If it is fibromyalgia then I have found regular exercise does help long term with the pain, but I've had to learn that I might not be able to push it as far, as quickly as some people and that I need longer recovery than most people. For example I can't run on two consecutive days, but I have worked out I can more or less do every other day.

To me it sounds like you need to have a conversation with your doctor about this pain, and what is causing it, and how you can then manage it.

I hope you find some answers.

Erika

08/08/2012 at 03:05

Thanks for your replies.

I do exercise regularly, I run or go to the gym (cardio) 6 days a week and if I am honest (and I like to pretend this isn't happening....) exercise does make things worse especially things where my spine needs to bend at all backwards (ie swimming, yoga and even cycling/spinning). One of the latest to join the list is bending forwards. If I end forwards to touch my toes and then stand back upright again its agony!

 

I have spoken to my GP many times (and seen several GPs) they tend to just say they don't know. I had seen on my request a rhuematoid doctor who again on my request ran an MRI scan but it was all clear and he said it was hypermobility syndrome. I then had a write-up sent and it said I also had fibromyalgia but I don't have widespread pain, just pain in one fixed point in my lower back. I've been discharged now and also nothing really left to do, the scans were conclusive and that was that.

 

I am having physio but its just training my pelvic floor muscles which to be honest isn't doing anything at all. It used to hurt my back but I've found out my back was in the wrong position. Its not really feeling as if its helping doing things properly either though I am also having accupuncture and that does hurt- it feels like a bruise which is apparently a sign of blocked chi (chi=energy).

 

 I've also been told many times over by medics and sports massage students and even a yoga instructor that the muscles in my lower back are very tight which I'd say is pretty much an obvious sign that something is wrong and my back has been over-working to take over from something else in my back that has stopped working for whatever reason. I'm thinking I'm not going to get a medical answer on this one until its totally disabled me which given a year or two I think could be a possibility at this rate.

08/08/2012 at 11:34

 I've also been told many times over by medics and sports massage students and even a yoga instructor that the muscles in my lower back are very tight which I'd say is pretty much an obvious sign that something is wrong and my back has been over-working to take over from something else in my back that has stopped working for whatever reason. I'm thinking I'm not going to get a medical answer on this one until its totally disabled me which given a year or two I think could be a possibility at this rate.

The one thing that helped me a lot with my back pain and muscle tightness is a decent osteopath. I initially went to see him about a whiplash injury that hadn't healed very well, and I'd been struggling with for years, but he's really helped me with pain in general, especially in my back. He was the first person to look at me as a whole and to treat the issues taking everything into consideration, rather than foucussing on one particular area or symptom. I can't say it's been cheap, but it sounds like you're at the end of your tether, so it might be worth exploring. I can thoroughly recommend at least exporing this option. I'm not sure where you are based. I'm on the Surrey/West Sussex/Hampshire borders and can recommend Peter Black from the Haslemere Clinic (or any of the other osteopaths at that clinic).

The other thing that has helped a lot is working on my core strength. It's amazing how much difference that can make to back pain. As you say, if you are not supported properly and other muscles have to take over you're asking for trouble. Pilates I have found far more challenging and helpful than yoga, but I think that very much depends on your practitioner. It may be worth talking to your physio about your core strength?

I understand your frustration. I went through a few years of being constantly in pain, and feeling very defeated. I still have bad patches, but they're much rarer and I now have a way of working through them.

Take care,

Erika

09/08/2012 at 04:13

Thanks Erika,

I'm in South East London, can't actually afford anything treatment wise at the moment, I'm pretty sure my GP wont refer me for anything like this but I am having physio at the moment and I do get the feeling my physio knows her stuff. I'm working on pelvic floor exercises at the moment which I'm imagining is meant to help my core but so far its not helped. I can't do much yoga at the moment because bending my back backwards at all really hurts and some times can leave an ache which lasts for days so not an option!

 

The thing I don't really understand is that my core strength isn't that bad. In the past (a few months ago) when I've worked on it (standing on one leg eyes closed and on a bosu ball) I managed to get quite good at it and it really didn't make a blind bit of difference. I'm out of practice now and its not suddenly gotten worse as a result. I did notice a knock-on effect with my running, it helped improve things and helped with my posture but the back pain was untouched.

09/08/2012 at 11:28

I think the thing with core exercises is that you have to be persistent...also, I think if your back has been bad for so long, it may take quite a while to respond to any treatment or exercises. I know with mine that it took a good 6 months to start feeling better, and nearly 18 months to get it feeling ok most of the time. I had to do my core exercises every day all that time, and still do now.

I'd say if I was in your position it is definitely at least worth exploring the issue with your physio - if he/she knows their stuff they might be able to help you in a number of ways. Mine was able to write to my GP to ask for me to be referred for a particular scan for example. They might be able to do the same for you as well as giving you some exercises that help in the long term.

I do appreciate how hard it is, and that it seems like there will never be end. If your GP's surgery is unresponsive, is there another one locally you could try?

If you have fibromyalgia there are treatments that can be explored which might relieve your pain. I've got a pdf leaflet I can send you if you PM me your email address.

Take care,

Erika

10/08/2012 at 02:05

Thing is, its not the first time I've done the core stability exercises stuff. When I first had the back pain start (just over 2 years ago) my GP handed me a peice of paper and it was about core stability exercises and lower back extentions. I tried my best at it and really thought that was it. It did seem to irritate the problem but I just thought it was a case of no-pain-no-gain.

 

However a year later it was still there and somewhat worse and I went back to my GP. I was then referred for physio who said I needed to attend ..."The Back Class" which I did...  it was basicly a Pilataes class and then 30 minutes of core stability exercises (balancing...etc) these were 6 classes spread over 2 months and "homework" which I did when I went to the gym (balancing and so on) I was at the gym 7 days a week so did these exercises 7 days a week. I tried my best at these and got quite good at all the balancing but anything where I had to lie on the floor really, really made things worse.  I persevered but it really didn't go away.

 

Its now nearly a year on from those classes and I've still got the back pain having now been referred to a different physio who again is working with me on core stability exercises. I'm 6 weeks into things but so far nothing. Its not helping and I don't think that it will considering the past experience I've had.

 

I doubt my GP would order any new scans. It was a hard enough job getting an MRI scan and that showed up all fine apparently. I'd wanted to know if there is any injury to the joint itself as thats what it feels like the problem is and I thought an MRI wouldn't show this but I've been told that apparently it would show on an MRI. What I do find odd though is the previous year I'd had a tibia stress fracture which didn't show up on an MRI (swelling did). I then had to have a nucelar bone scan which not only showed up the SF but also joint damage. Its a bit confusing from where I am and my GP it seems knows even less then I do about these tests! I've been discharged from the rhumatoid consultant now and so can't really ask any questions and so I'm having to try to ignore the fact it makes no sense to me.

 

I'm not 100% sure it is fibromyalgia, I always thought that was widespread pain. This is just pain in one area to one joint- its not something that gets better with mild exercise (infact walking and cycling irritate it more then running). Ibuprofen and NSAID pills do very little and sports massage doesn't even touch it. The only thing that touches it is if I move and stretch my back (in a hypermobile way) it sort of "releases" things but that of course makes the whole thing worse once I revert back to a normal position! It seems the more reading on fibromyalgia I do the less and less I feel fits. I can see it is a major problem which affects so many people because its so engulfing and me? I have lower back pain. No arm/leg/upper-back pain. I get fatigue and don't get me wrong that is a pain but its not the same type of pain as my lower back which is very much one specific point and unaffected by all the things that should make it better.

 

I'm thinking it would seem I have to wait for this to get worse so I can then go to the GP because I'm unable to walk or sit properly- then they'd have grounds to run proper scans!! I want to think thats a joke but its slowly becoming more of a reality from what I can see.

10/08/2012 at 10:11

Has your physio been able to explain his/her diagnosis to you? They should have in mind what they think the problem is, even if you don't agree with them? It might at least give you a starting point for further investigation or discovery on further treatments.

Is there another GP surgery you could go to? I'm very surprised that as you are in that much pain that the GP or the physio isn't doing everything they can.

12/08/2012 at 04:11

The physios -all of them have always said they don't know whatever has happened. Its almost like some sort of liable issue!! I have asked but no opinion other then "this is what we need to do to fix it, its just a weakness". The treatment every time is just balancing and core stability plans. It was the same when I had a stress fracture in my tibia, I don't get why they assumed doing balancing exercises was going to help that (and they didn't) just like I don't get why when I have now seen 3 separate physios about the lower back pain they all give the same treatment despite the previous same treatment not working.

 

I don't have another GP I can see sadly, its very tough here to get a GP as I am in London and surgerys get pretty booked up. I have seen different GPs within the surgery and its actually lucky if I get more then a "I don't know" when I see one, another will just say "I'll refer you to a physio because I don't know" and when I have-on my request been referred to a consultant he ran an MRI scan which apparently was all fine.

 

As a result I have then been forwarded to a physio and am having accupuncture. I do have a heap of pills I can take (which apparently is the only way around this now: "its just a case of pain management") I have coedine, tramadol, strong NSAIDS...Kinda don't want to spent the rest of my days on pills to be honest, The accupuncture and physio, I have 6 sessions in total (2 gone) neither have helped and infact they make things feel a lot worse for the following day or so but I guess I'm holding out for them suddenly kicking in some time later. At the moment, besides knocking myself out on pills, nothings working and to be honest I really want to know what this is rather then just blotting out the pain all the time.

14/08/2012 at 13:03

I know what you mean about the pills. Sometimes though it can help to take them for a bit to break the pain cycle and then come off them slowly. I don't know if you've already tried that? I know you might not like taking them, but perhaps it might be worth it if it means you have a better quality of life. It might be worth asking for your GP out right for a referral to a pain clinic/specialist. Depending on your PCT there might be a number of options there. A lot of GPs will just prescribe the painkillers they are used to prescribing when sometimes there are other options that they might not be familiar with. A pain clinic can also help you find other ways to deal with the pain.

Has the acupuncture got any better at all? It's not something I've tried myself, but I know other people have had a lot of success with it over time.

15/08/2012 at 03:12

Annoyingly I know why they don't work for me. When I was much younger I had really terrible period pains- I still do. I started taking ibuprofen regularly and also paracetamol for the pain, they didn't do enough so I took a harder type of NSAID. Eventually that stopped working and I was given something stronger but told that the reason the pills weren't working was because I'd taken them so frequently for years and my body had built up an immunity to them! I was given the stronger NSAIDs for my current period pains but prewarned only to take them when I have period pains (eg once a month) and not at any other time or they would also stop to work. I do notice when I take them the pain in my back also reduces- doesn't at all go away but does reduce and it does help, NSAIDs as you may know are designed to reduce inflammation.

 

I've been seeing an accupuncturist for 2 months now, this is the pain clinic my GP referred me to. I am allowed 6 sessions and have had two, its supposed to be done weekly but I'm not allowed to book in advance and if I try to book a session they're all booked up for weeks- hence only being able to get appointments once a month. The physio I'm seeing is also part of the same clinic but the appointments so far have only lasted 10 minutes-if that. Its due to the accupuncture sessions running late. Its annoying but there is nothing I can do and sadly I think that neither therapy is going to work when this is the way they run things.

 

It has only been two sessions and I get the feeling if it were done properly (ie if I were able to get appointments every week rather then every month) it could really make a difference- but thats just not possible and there's no way I could afford this sort of treatment by myself. I also wonder whats caused the problem with my back in the first place because its only going to come back, my issue is that its nor as a result of an injury so it must be something I've caused myself- pain doesn't arrive for no reason. Unless I know what's caused this I wont be able to prevent it either from returning or from getting worse which it already seems to be doing.

21/08/2012 at 20:11

Hi Jenn - I'm on holiday so am writing this on my phone, othewise I'd respond more to you. You might find this link interesting: http://thesportsphysio.wordpress.com/2012/08/19/hypermobility-and-sport/

Edited: 21/08/2012 at 20:12
23/08/2012 at 20:48

Jenn,

Hypermobility can cause pain and instability  in many joints. There is a Hypermobility specialist at University College Hospital, London if your GP can give you a referral they will test you for various forms of hypermobility and advise you the best way to manage your condition.Sometimes a one off appointment will give you the information you need to reduce your pain. If severe enough, they also admit people for inpatient physio . I think the consultant that specialises in this condition is called Professor Grahame, if you google him it will bring up lots of related info.

24/08/2012 at 20:50

As you might imagine, I am hypermobile as well. I'm also a GP FWIW.

To the OP - I get your frustration. You're right to say that your hypermobility itself shouldn't really cause much pain - but it leaves you prone to injuries that can. If you had such an injury, though, it ought to show up somehow. They're elusive buggers though, so it's perfectly possible that there's nothing to see on XR, MR etc. 2 years continous is unusual, mind.

I'd also agree that fibromyalgia is a syndrome defined by widespread pain - you can't really attribute continuous back pain to it.

Don't despair - there are a few threads on this site involving people who have managed to maintain their running. Personally I have to cap my weekly mileage to about 35 mpw or my knees swell, I also have to change shoes pretty regularly - about every 250-300miles - or the small joints in my feet swell up. I tend to rotate swimming and cycling as well (the latter has really helped my knees- plenty of hill climbs) and have kept my tendency to flare up to a minimum. I've now got 4 ironmans and a few marathons under my belt, so despite the niggles, I still get out to enjoy myself plenty.

One final thought - no all back pain is musculoskeletal - has anyone considered eg endometriois as a cause of both pelvic and back pain?

 

28/08/2012 at 04:48

Hi Blimeythatsbendy, thanks for your reply.

I have seen a gyno (in reference to your query on endometriosis) and they've not picked anything up, hormones seem fine and did an ultrascan which seems fine, I don't have especially chronic periods any more (used to about 5 years ago) so am doubtful its gyne related.

 

I still think its joint related because movement hurts and sleeping is fine (unless I'm in an odd position when sleeping!) sitting upright or with any sort of backwards curve on my back (so cycling, yoga, even swimming) irritates the pain and when I stop depending on how long or how intensely I had been exercising, I can end up with bad pain for days. It is annoying.

 

I wish I could run 35 miles a week! I had to cut down due to my knees and also I guess I just got old. I just feel fatigued a lot more then I used to. I don't know why (and blood tests don't know either) but I used to run around 20-25 miles a week, its now much less I do other forms of exercise though to compensate just not stuff thats so repetative on my knees as that causes pain. Running split across days works well too.

I hope it is muscular though, I'd like to think one day this would just go away but I worry that its not just a worn out muscle but a worn out joint and that its ony going to get worse- in all fairness, my experience tells me that the only thing I have been able to learn from this is that it has gotten worse with time and joining the dots would mean it will continue to get worse.

06/10/2012 at 20:14
I was running 5k couple of times a week last year - my back siezed in November and then a few days later a disk popped out. After a long time being bounced around trying to work out what was happening I eventually saw an osteopath in August. She is fairly certain I'm hypermobile and looking into this and my history of joint issues since age 14 and looking at my children this all seems to fit. My hypermobility is general through my spine - I'm not an extreme case - but my Osteo says my ligaments are not supporting me so my muscles have to be super strong

The Osteo has prescribed Pilates for life to get my chronically fatigued back muscles strong - this has been tough as I'm not able to exercise when my disk is aggrevated so a long recovery. The problem is I need to run - I have been really good and not run - but I need to to be able to cope with stress of normal life - busy working mum etc with a tough job.

I'm tempted to give running a go tomorrow on a treadmill so a little more cushioned than my old run. I wondered whether anyone else was running with a wobbly spine?
07/10/2012 at 03:28

I've not experienced what has happened to you- and not had my back described as wobbly either But I have got an ongoing back pain which worsens with just about any movement (I'm fine as long as I keep absolutly still...) I was advised to do Pilataes which didn't help but I think thats more due to the classes being rubbish then my back not responding so if the Pilataes works for you, don't stop. I have though been seeing a physio whom I think is a private physio but works for the NHS and she has been suggesting exercises for me which I know are Pilataes exercises but they've not really helped so I'm not the best advert. But I have read bits and peices and it would seem just about everyone else (but me) seems to benefit from those types of things.

 

Lovehatecarbs, if your back still hurts don't run. Pain means you have a problem and your back needs to repair. Its going to be the impact that does it for you and causes the injury to worsen or another injury to begin. You have many disks in your spine and any number of them could slip or slip further if under pressure.

 Get your back stronger, wait for the pain to go and then start running again, slowly! It wont be about going back to how things were before- you will need to make changes to prevent the same problem occurring again.

If your hell-bent on exercise, try using things like the elliptical/cross trainer machine or spin bike and concerntrate on keeping your upper body still (not swinging about with each leg stride) use speed as oppose to resistance to prevent as much movement- and keep close to a mirror if you can to try to monitor your posture and keep an eye on your movement,

And if you can, see if you can rope any of the gym staff or even a physio in to what your doing, hands on advice can be really useful when things like this happen.

07/10/2012 at 17:44
Thanks Jenn - I didn't go - it's the whole walk before I can run thing - I can't walk that far without pain so I know running regardless of the pain is not sensible - I just want to run!!!
09/10/2012 at 03:19

I know how you feel! I had an injury last year (sprained ankle, grade 2) and after the initial pain wore off, I knew I still couldn't run because it could so easily go again and I also needed to work on building up the muscles surrounding the torn ligament again and I found it so frustrating!

 

I found the best way around this was to focus on what I was doing at the time. Running was not it. I had to focus on being the best I could at what I was doing at the time (at that time things like cycling, rowing and a few balancing acts on various gym balls and bosu balls). I hadn't even set a date for running! I tried again running some weeks/a month or two later and did so slooowly, as in 5 minutes stop and walk etc and built it up.

 

You'll get there, but trying to tell yourself not to run is going to make the whole thing a lot more painful then it needs to be.

Hope your getting by OK.


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