My joints don't move freely

Everyday living
1

I know MS isn’t a joint disease, but my joints are crunching and clicking all over the place.

For example, I can raise both arms out at right-angles to my body, crucifix-style, but both arms go over a crack, or bump, at the shoulder. Similarly, I can rotate both feet from the ankle, inwards or outwards, but both ankles go over a bump.

I’ve had complete Rheumatology screening - twice - all of which failed to reveal anything, and if I try to discuss it in connection with the MS, it’s dismissed as “not relevant”, and doesn’t even appear in my notes.

I’m just wondering if changes in the load-bearing capacity of my muscles could actually be causing damage to the joints, because nobody seems to think it’s a big deal.

I know noises, by themselves, don’t always indicate a serious problem, and they’re not accompanied by pain, exactly, although there is discomfort, as I can feel the movement isn’t smooth and unimpeded. It feels a bit like when something hasn’t settled in the right place, and you really want to crack it. Anyone who’s ever done this will immediately know what I mean - there’s not a pain, exactly, but just a sense of it not being right, and a tremendous sense of relief and satisfaction if it cracks back to where it should be.

However, mine are not cracking back to where they should be, but staying “not right”, and feeling permanently as if they’re out of place.

I feel I’ve already exhausted all the tests, and don’t know what else I should be asking for. Should I just accept this as part of MS, even if it isn’t widely recognized as such?

Sometimes I worry that I might have been misdiagnosed. And yes, I think that is worry, not hope, because I think I’ve got accustomed to the idea I have MS, and that I’ve just got to get on with it. But sometimes I think there’s something else sinister (As well? Instead?) they still haven’t found…

Tina

2

Hi Tina, In the days when I could move slightly better than I do nowadays, my right leg always needed to “click” into place. It wasn’t painful either before or after it was “clicked” but once it was “clicked” into place it certainly felt more comfortable. I never mentioned this to neuro because I just accepted it as something that was part of my ms. As for misdiagnosis I think a dr wouldn’t give a person a diagnosis of something like this without being quite sure, however since there isn’t a definitive test for ms they must get it wrong sometimes, just like everything there will be that one in a million chance. I know you do have lingering doubts because you talk about it on here sometimes, all I can really say about you having something else sinister, don’t you think that by now, if it was that sinister it would have manifested itself in a more (for want of a better word) sinister way by now. I mean, I went six years undiagnosed for six years and during that time I often wondered if I had something life threatening but as time went on I came to realise that if it was going to kill me it probably would already have done so. Cheryl:-)

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Hi Tina After reading your post with what your describing sounds very simillar to something a friend of mine suffers with, which is hypermobility syndrome I could be wrong but just thought I’d mention it. Certainley dosen’t sound MS related but again could be wrong. S xx

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Hi both! Cheryl, I get what you’re saying. Perhaps “sinister” wasn’t really the right word, because I know it can’t be “sinister”, as in “fast killer”, as I reckon I’ve had it for donkeys’ years, even if it wasn’t MS. But I guess I’m just a bit troubled I have symptoms that aren’t accounted for, but nobody (the medics I mean, not here) seems that bothered. If they accepted it was the MS, then I would too, but the confusing thing is to be told it’s NOT the MS, yet in all the tests over the years, that’s the only thing to have come out YES! An X-ray once suggested I had a minor structural abnormality of my ankle bones, which could be responsible for some stuff, and isolated blood tests have shown raised inflammatory markers, but not consistently, and not in conjunction with anything like rheumatoid factor, or lupus anticoagulant. Sue, it’s interesting you saying about the hypermobility syndrome, because my little nephew - just 11 - is currently being investigated for this. I also have VERY blue whites of my eyes, which I believe is linked to brittle bone disease, but as (touch wood) I’ve never broken anything, I’ve never thought it’s worth pursuing the odd colour alone, but they definitely don’t look like most people’s. Tina x

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Tina It must be terribly frustrating for you not to get the answers you want, wish I could be of more help to you but I can’t. Lets hope someone else comes along with more info for you. Sue xx

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Tina, is it wrth going back to dr(gp I guess) and saying that your nephew is being investigated for hyper mobility syndrome and that you have unexplained symptoms and wonder if it is worth further investigation. Cheryl:-)

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Hi Tina,

The hypermobility syndrome has already been mentioned and is something that is a strong possibility. Both my daughter and I suffer from it and for both of us it has resulted in fairly major complications.

Of course I can’t say this is what you have got but if it won’t bore you to tears I’ll give you a run down on our histories and you can see if it seems relevant.

In our cases it is congenital, that is something we were born with. For me it presented at birth with a hypermobile ankle joint that was so mobile in utero it had folded back on itself and my foot was born upside down. I had to be splinted for 2 years to stabilise the joint and all through my childhood I constantly sprained that ankle and spent a vast amount of time on crutches (never knowing it was practice run for the years to come!!! ) I had lots and lots of physio to strengthen the loose ligaments and stabilise it and it is far better now but I can still turn my foot over and walk on the side of it quite easily and it crunches all the time in the ankle joint.

As a teenager I had a charming party trick of being able to lift my arms over my head so that my elbows would sit behind my neck and I could scratch that part of my back that no one else can ever reach. Quite handy really… And then one day when I was about 18 I dislocated my shoulder…

All through my adult life my shoulders have crunched and popped and my right shoulder has actually popped clean out of its socket many, many times. And I would usually just pop it straight back in again. Then in December last year it popped out again and I couldn’t get it back and got it X-rayed and discovered I have torn cartilage, broken bones and torn tendons all through the whole shoulder joint. Some of the damage was because that was a particulary bad dislocation and some of it was accrued damage from years of popping it in and out. And now I am waiting for a full shoulder reconstruction

My daughter is very hypermobile. Handy for a dancer until she developed damage to her hip from the hypermobility to her hip joint and at the tender age of only 13 she has just undergone major hip surgery to remove the bursa, cut and replace tendons and repair damaged muscles

Prior to her hip becoming so agonisingly sore that she needed surgery she too had a “party” trick that had me hauling her off to the GP and physios. She was able to pop her hip in and out with a snappy flicking motion. Kept her friends most amused…

The long and the sort of this tale, Tina, is that if your shoulders and ankles are grinding and clunking and clicking, you may (may, mind) have a joint problem going on which is totally unrelated to the MS. And if left untreated, particularly in the shoulder, it could devleop into a rather nasty mess. I would ask your GP about rotator cuff problems in your shoulder and tears to your labrum (the shoulder cartilage) and ask for an ultrasound study of the shoulder joint and then if that shows anything untoward a referral to an orthapaedic surgeon might (might, mind) be in order.

All the best,

B

8

Thanks Belinda,

I can’t remember much specific, when I was a kid, except my thumbs move in a strange way, which nobody else can do (indeed, it makes them cringe). Again, they go over a kind of bump, which forms a visible jerk. My mum used to tell me don’t do it, because you’ll get rheumatism in them when you’re older (Haha - ended up with a lot more to contend with than rheumatism, and I’m sure it wasn’t all down to my quirky thumbs).

Thanks, I couldn’t remember the expression “rotator cuff”. Yes, I think that’s the name of the shoulder problem - from what I’ve read on the subject before, anyway. If it was just one side, I’d accept I must have injured it somehow, but both sides are going the same way now. I don’t think I do anything to injure both shoulders. Or maybe I do, because if my legs are weaker, perhaps I haul more weight on my arms, getting in and out of bed, and stuff like that. I don’t consciously have difficulty getting in/out of bed, but I just wonder if subtly, over the years, I’ve developed techniques that take more weight on the upper body, because I don’t trust my legs as much - certainly first thing in the morning.

I’ve never (to my knowledge) had breaks or dislocations, though. My grandma once got broken ribs when somebody hugged her, and I think she can’t have been very old when that happened, because she only lived to 57 anyway. So there’s definitely odd stuff in the family. But she was an extremely heavy smoker, which is known for leaching calcium from bones, so she might have been fine, if not for that.

I sort of agree with Cheryl that if it was anything serious, it’s odd nothing worse has happened. Yet it’s equally odd it seems to have developed perfectly in parallel with the MS, yet isn’t deemed part of it! That’s what sometimes makes me wonder if the whole thing’s a mistake. I never did have my diagnosis confirmed by lumbar puncture (my choice), but my neuro must have thought it compelling enough without that - and the insurance Co. agreed. I know they’re no pushovers, so they must have been satisfied with the evidence. But my neuro did make a point of writing that an MS diagnosis is NEVER certain. I think this was just a general observation, and not an indication there were specific doubts, in my case. But the insertion of that get-out clause still makes me wonder, sometimes.

Ho hum…

Sorry to hear about your woes, by the way - that the APS wasn’t a false alarm. I’m sure they’re eventually going to prove all this stuff is connected, and that’s why those of us with MS are more likely to have things that haven’t classically been considered related.

T.

x