Shoulder... Help/advice please!

[Gailj]

Hi everyone,
I am just looking for some advice...
The story so far...
Hubs was diagnosed with JHS, followed by youngest daughter, she is 14.
My daughter suffers with pain in her hips, knees and ankles, has small knee caps, 'knock knees', flat feet and has always been bendy. She has had physio, which has helped a great deal, but she has now been discharged. Her hips and ankles are a lot less painful, and the knee pain is more intermitant than it was. She has had a dislocated knee and a problem with a small bone in her foot moving.
Now though, only recently, she has started with a troublesome shoulder, she says 'it feels wrong' or 'out of place' , I have to help her to gently manipulate it, by raising the arm slowly, it makes quite a loud 'clunk' and then she says it feels 'in place' and more comfortable.
I am assuming this is subluxing, but my question is, do I get her straight back to the docs and ask for more physio, is there anything that can be done? Is there a possibility it will completely dislocate? Will things like this keep cropping up?
Sorry for the questions, but not sure what to do for the best, and I know many of you have been down that road.
Thanks in advance
xx
Oh, sorry meant to add that my daughter is still under paeds at our local hospital, but her next appointment isn't until May, they said if she isn't any better, they will refer her to rheumy.

[Gailj]

Just to let you know that I have made an appointment with our GP for next week as it keeps happening, 2 or 3 times a day.

School are not too happy and have sent her home instead of helping to get it back in place, this has caused more problems and I have had to write a letter to the Head teacher.

Thinking of taking DD to A&E next time, at least they will x-ray and probably get her an appointment at the fracture clinic quickly!
xx

[gila]

ello
I would go straight back to doc and ask for physio for her shoulders-
it sounds like the physio she saw was quite good as it helped- but just in case...here 's a great little article by the top 'hypermobile shoulders' stanmore physio
http://www.csp.org.uk/frontline/article/smooth-moves
(oh and there is a whole thread on shoulders on here which you can find quickly by using 'advanced search' in which you might find some helpful tips too)

and... I'm sure you know... but again just in case ... it s best if your daughter continues to regularly do physio exercises even when discharged

the a& e etc sounds like a good idea too, though mostly to have a med bod record of it happening (in case school etc get 'funny ideas'), x ray with it out could maybe be helpful re how best to get it back in and to make sure her joint sockets arent too shallow (that s the other reason why joints can be hypermobile- and some peops have both the too lax ligaments and shallow sockets)-
but I dont think they'd refer her for physio, that will probs be down to your gp- and when you see him, I would ask for your daughter to be referred to rheumy to get a dx.
good luck for all of you!
xxg

[Gailj]

Hi Gila
Thanks for the reply and info.
It's a very interesting article, I think I will print it and take it to Physio when DD gets the referreal back again, ( I'm sure the GP will refer her, he is very good)
The shallow socket part is very interesting too.... I have so much to learn!
It was the Peadiatrician at the children's centre at our local hospital who diagnosed DD, but I'm not sure what else Rheumy can do, do they have a different approach?
Thanks again
Gail
x

[gila]

I hadnt read carefully enough...
so your daughter has a dx by paed (well done paed!)- and he's thinking of referring to rheumy- I would in that case "wait and see" till you see them re poss rheumy (who would probably only be more helpful if he is v familiar with HMS/EDS)- and for now just ask gp for physio

as your daughter is a teenager, it is 'nearly expected' that she'll get more probs at the moment, as her hormones are raging and that can influence laxity of ligaments -
once the hormones settle and if in the mean time she does physio, learns about good posture, trying not to overextend etc- there s a good chance probs might settle/get much better
and yep, learning about HMS is a v good thing (although rather time consuming and at times scary...)

oh and if your daughter starts to feel dizzy/fainty/has 'racing heart' (especially when standing)...this might be due to POTS (an autonomic dysfunction which quite often comes with HMS and which quite often first shows up in teenage hood) - great info on this on www.stars.org.uk and/or www.dinet.org
good luck!
xxg

[Gailj]

Hi again,
I asked for a telephone consultation yesterday with our GP, he advised if the pain gets a lot worse, or obviously if it won't pop back in I am to take DD to A&E, he wants to see her next week, and will do another referral to physio in the meantime.

I found the link to stars very interesting.... Hubs is being treated by Neuro at the moment , possible epilepsy, but the medication doesn't seem to having much of an effect, some of the symptoms describe Hubs down to a T!! I think I will print some of the pages and enquire at the next Neuro appointment.
Thankfully, DD seems to be clear of any other symptoms at the moment.
The Paediatrician did seem to have knowledge of HMS, but I asked him about it, Hubs had been diagnosed 6 months previously, we had never heard of it before, but looking at DD it was obvious once we knew what we were looking for!
Thanks so very much, you've been a great help
x

[Gailj]

Hi Gila,
Just thought I'd let you know how DD got on at the doctors....
The shoulder popped while we were in the waiting room, so GP got to witness the putting back in process!
His words....'oh, that is quite dramatic' ! Yes, we know. He also commented on how restrictive it must be. It is.
He had already done the referral back to physio after speaking to him on the phone last week, but he is also asking for an Ortho Consultant to have a look at it.
Fingers crossed physio is all it needs!
Once again, thanks for all your advice, I'll keep you posted
xx

[gila]

"good" (well... ) that your gp is now fully aware what happens with your daughter's shoulder-

re ortho bod though... pity enough they tend to not know that much about HMS/EDS (hope that changes in the future! atm rheumatologists are the most likely to have an idea about it - thanks to all the many years of hard work of prof g et al and organisations like the HMSA)- so all too many times they suggest surgery and insist it will work... only to then later find it didnt have the expected results after all...
so if you find the ortho bod isnt all too familiar with HMS/EDS and he suggests surgery... I d say first get a second opinion from your paed (and/or also ask hubby's dxing doc) and come on here to see what experiences peops had with a particular procedure, some work better than others
good luck!
xxg

[Gailj]

Hi,
Just thought I would post an update

Had to chase the Physio referral as it had gone on walkabout! Finally found where it had gone after many phone calls and DD had her first appointment yesterday.

The therapist was a lovely young woman who knows about HMS.... PHEW!!!!!
DD has some gentle excercises with a band to help strengthen the muscles, the therapist has told her not to overdo it, and no excercises if the pain is too bad. Also when raising the arm, only go to where it is comfortable.
She also advised ice packs and Ibuprofen
She said it is definately popping out - it did it while we were there - but is hopeful that in time it will ease.

As for the Ortho referral, I decided to phone about that today as we had heard nothing, apparently the Consultant has 'removed' DD from his list, deciding that Physio is the best and first option, if the therapist is not happy with DD's progress or feels there is more of a problem, then she can refer DD back to Ortho.

I was very wary about Ortho, but this Consultant seems to have the right idea!
A bit of a result I think

Next phase is to figure out why DD isn't sleeping

Thanks for the advice Gila
Best wishes
xx

[madmum]

If she is like my son he says it is the pain making it difficult to settle. He has now started melatonin which helps.

[cyberbarn]

Hi,

My son finds it difficult to settle and also doesn't sleep so well on days where he has been really active. At first he didn't think of it as pain and it was only when we tried paracetamol before bed and found that he slept better that he realised that it was the pain that was keeping him awake.

Now on days where he has been really active we routinely give him paracetamol before bed whether he thinks he needs it or not.

Cheers,
Jennifer

[Gailj]

Hi madmum & cyberbarn,


The GP has given her codeine for her worse days and advised the obvious; reading before bed, no t.v.,etc, but she can still be reading at 3am!
It's as if she just can't switch off.
Some nights it is discomfort that disturbs her/stops her from dropping off, but she says that isn't always the case.
Perhaps as you say cyberbarn, she just isn't realising that it is pain. I had a chat with her last night and she is going to try having pain relief before bed, she does try to lay off the meds if she feels doesn't need them, but this might just do the trick.
Thanks for the advice
Gail
x

[gila]

Hi gail,
how brilliant that you/daughter had a right result with both physio and orthobod!

re sleeping- (sorry mods for going ot-but I could only find a very very old and rather short thread on sleep - which quite surprised me as there's bucket loads of posts on sleep)-

in puberty in general the circadian rhythm (which kinda governs our 24hr sleep/wake cycles) does go haywire- giving an effect similar to being jet lagged- if you google 'circadian rhythm puberty' there's loads of reputable info to be found on this- so maybe she is just a 'normal teenager' in that respect
my feeling is though ... that maybe in bendy teenagers this normal circadian rhythm 'haywireness' might be more 'extreme'...

"good sleep hygienie" might help a wee bit (again google this- but beware mostly they also say 'no reading in bed' - but if I dont read in bed I cant get to sleep cause my brain just wont shut up )- and again my feeling is that we bendies may need longer 'winding down' time

IF (it wont necessarily happen!!) your daughter begins to have problems with getting dizzy/fainty whilst standing, when getting up from sitting for a while and/or starts to feel unrefreshed from sleep even if she has slept as long as she wanted to (like on week ends)... then maybe there is something up with her autonomic nervous system... this is rather common in us bendies (though it seems teenagers in general are a bit prone to this, but normal teens seem to totally grow out of it, bendies seem to tend to keep having phases of it/or at worst permanent problems with it)

here http://vimeo.com/35766364 is a great talk by an EDS/HMS/autonomic dysfunction/sleep disorder savvy doc- it also talks about bendies indeed having a 'hyperreacting' adrenaline/cortisol thing going on which makes it harder to 'switch off'/'settle'
and for good general information on autonomic dysfunction you could have a look at stars.org.uk

oh and... MADMUM too (sorry I am kinda shouting but just to make you notice this amongst my long blabla- as this might be helpful for your son too) - if it's more general discomfort/achiness (rather than bad pain/ pain somewhere in particular) that gets in the way of getting to sleep-

then progressive/active muscle relaxation exercises done before/ in bed might help too-
our muscles have to work harder than normals=get tense easier, but we also have a tendency to unnecessarily tense muscles too much whilst doing things, this is usually most obvious in things that involve gripping- so sometimes our muscles just dont relax by themselves which is uncomfortable, can make you feel achy, can even be downright painful.
xxg

[nemonie]

Have a look on the amitriptyline thread as well for sleep issues.

[Gailj]

Hi,
Gila, Once again, thanks for the advice.

What you say about not 'winding down' rings true, while DD was at Physio, the therapist had to keep reminding her to relax her shoulders!

It seems she keeps her muscles tense without realising, now I can understand more, I think winding down excrecises before bed could be a great help, I'm thinking of asking the Pyhsio next time we visit.

I haven't managed to watch all of the video clip as yet but up to now it is very interesting, - with 2 bendy bods (and possibly my other 2 kids as well) any info is received with open arms!

I'm not sure if DD was just plain wiped out, or if it was the pain relief before bed, but she managed 6 hours sleep Sunday night

Nemonie, the G.P was extemely against anything other than pain relief, but I will certainly be asking the Peadiatrician for advice on the next visit
Best wishes
xx