HIPS HELP

[mumanddad]

I don't really know which part of the forum to start to ask for help really, so I'm going to put this post on a couple, hope that's ok.

My daughter, who is 17 was diagnosed as having Hypermobility and Ehlers Danlos Syndrome in 2007 although she's never had the genetic tests. It started with her shoulder dislocating which was improved drmatically by an operation when she was 15. Soon after she started having pain in her hip and this has got worse ever since. However over the last 2-3 weeks it has become ridiculous!

Her hip locks when she just stands or takes a couple of steps. She often falls as it doesn't hold her weight. Nothing helps except morphine so we have to phone an ambulance every time and spend hours in A & E. I think they're getting sick of seeing her now!

Her hip consultant has been seeing her for 2 years and has just decided that there's nothing he can do as there is nothing wrong with the joint and is referring her for physiotherapy. We asked him to refer her to a rheumatologist who told us this week that she has Osteoarthritis. He also said that physio would work.

I'm sure the physio will have some effect but we need something to work immediately not in a few month's time. We can't keep rushing off to A & E every day!

We tried Oramorph but that didn't have any effect on her at all. She takes Tramadol daily.

Does anyone have any ideas...which part of the forum to ask for help, any history of similar problems, recommendations for pain relief/treatment, specialists in North West England?

Any help or advice gratefully received mumanddad

[Stone]

I don't really know which part of the forum to start to ask for help really, so I'm going to put this post on a couple, hope that's ok.

It isn't, but soon fixed I've merged this into our existing thread on hips to give you a starting point for ideas.

Does anyone have any ideas...which part of the forum to ask for help, any history of similar problems, recommendations for pain relief/treatment, specialists in North West England?

Lots of ideas, not sure how many of them will apply but we can have a go! First port of call would usually be GP to try and sort out some pain relief that works. There's a fair bit of info on here already - have a look with the search function as it will throw up some good topics. (we try and keep everything grouped together). If she's been under the care of a consultant for all this time I'm not sure why he would say there's nothing wrong with it when it's not allowing her to weightbear...has she seen him since it's got bad?

Some of us have found the people in A&E don't fully understand the ramifications of being hypermobile and can miss things they think are unlikely or impossible that aren't. Could she have dislocated it, or could it be subluxed and not going back into place properly due to swelling? Physios can be quite good at teaching ways to manipulate stubborn joints back into place, but that doesn't help you in the immediate future!

Hope the other posts in this thread give you something to be going on with, I'll have a flick through and see what else has been posted too.

[edit: here's 5 minutes worth:

My hip feels dislocated /subluxed - what should I do?
Hip Brace??
Hip subluxing - any advice?
Bad hip pain

Hopefully some of that is relevant to you.]

Stone

[sheppeyescapee]

I've been having problems with my hips for a while now and it hurts no matter what I do, lying down, sitting, standing it all hurts. Getting in/out of bed and bath results in lots of clunking and then not being able to weight bear on my right leg without being in excrutiating pain. Last couple of weeks there has been a grinding sound/feeling, that can't be right?

I'm seeing my GP in about 1.5 weeks time so will bring it all up with her. Need my pain pills changing and something for at night. Any ideas to minimise the pain for the meantime?

modnote:merged into hips thread

[paw]

Jack, your issues sound familiar but I don't have much help to offer. I stand on the bad leg and move the other one up and back and that usually (depends how it has come out of place) makes it crack and go back in place. I often have damage to the soft tissue and get trochanteric bursitis which is miserable. You could go to the doctor (Rheumatologist?) and ask for a cortisone injection but they can cause joint damage if used too often. I use heat or ice and rest and I need crutches or a walker to get around in the house when it is really bad.

My hips hurt all the time and I am not sure what to do about it. I don't want surgery so there are not a lot of good options for me. I am very worried that if I had surgery it would end up worse later on.

[sheppeyescapee]

I wish I could but my dr refuses to prescribe anything different because she hasn't had permission from rheumy, I can't get hold of the rheumy from bath and they haven't replied to the calls from my support worker.

[milia]

so three times this week my hips have subluxed, after almost nothing from them for a good couple of months.

Is this normal- to have flare ups? Can it be related to being run down/overuse (standing/walking)?

I would like to ask my doctor, but as we all find so few have even HEARD of Hypermobility syndrome!

Thanks.

[leashy11]

I suspect overuse would be enough to do it. Mine pop in and out quite often and it's usually something stupid like I moved too fast or slightly wrong that sets it off.

[Pootje]

Also big hips problems.
Luxations and biritis Inflammations...
It's horrible and i get a lot of pain of it..
Now i've in both hips inflammations..
So i'm really happy that this topic is here so i can get some advice en read how other people deal with it

[mumanddad]

Hi All,
I really need help!

My daughter has Ehlers Danlos syndrome type 3,
Osteoarthritis,
Pernicious Anaemia
and possible Pituitary Adenoma (awaiting more tests)

She started dislocating 5 yrs ago, right shoulder. Had an operation by medic's name removed, PLEASE READ AND FOLLOW SITE RULES who shortend the ligament. This has now stretched and subluxes every few weeks.
However the main problem is her hips which "go" on almost a daily basis. The pain is unbearable and she goes in an ambulance to A&E. We spend hours there while she manoevers her hips "back into place" and is on Entenox, sometimes Morphine too.

She was under a hip consultant for 3 years who cancelled 2 arthroscopy operations on the day! Nothing showed up on x-rays or MRIs. All he said was "excercise"! How do you excercise when everytime you stand or love your hips go and you end up in hospital!!???? We've recently seen a physio who suggests it could be the Illiotibial band flipping. Physio seems to be the only answer to this too! She also said that her brain doesn't seem to be telling the correct muscles to move.

The problem I have with this is the inconsistency. Sometimes it's one hip, sometimes both, sometimes hip and shoulder, but all "go" at the same moment or within a couple of minutes! When I say "go" it's because we don't know what is going on in the hips. They don't dislocate or sublux but if she's standing she gets sudden pain and collapses to the floor. At the moment she is unable to stand or walk at all and it happens while she's perfectly still in bed.

In June I had the Implanon contraceptive implant removed as I had read that progesterone only is really bad for EDS/HMS. I put her on a contraceptive pill/patch and it was like a miracle. It stopped happening virtually overnight and reduced to a couple of times a month, usually during her period. We were advised to keep her on the patch constantly to prevent this.
This lasted for about 3 months. She started to get a little worse, once a week, in October. She was admitted to hospital for 3 weeks due to an infection and what turned out to be Pernicious Anaemia on December 3rd 2010. She didn't have anything go whilst in there. Because she was confined to bed she now cannot stand at all. Since coming out on 22nd December she has had the hip problem almost daily!
I've tried increasing Diazepam in case the cause is muscle spasms but it hasn't helped.She often gets spasms in her legs after her hips go.

This is driving us all crazy! We have no life at all. As I'm writing this she is in A&E again. She was lying in bed when her hip went and her shoulder subluxed. She was not moving! This is the 3rd time since Sunday. The doctors in A&E have no idea what to do and just leave us with the entenox. We've even been accused of having Munchausens by Proxy!!!!!!

Do these symptoms ring any bells with anyone? Any ideas for treatment (other than physio!) or medication?
We have lots of appointments arranged but everything takes months. We can't cope much longer!

Sorry for the long post, details and moaning but we really need help from people who understand.
Thanks

[Rosie]

Hi mumanddad

I am not sure how old your daughter is, but i will try to address some of your questions.

nothing showed up on x-rays or MRIs.

Unfortunately this is very common for us with EDS3/HMS, it doesn't mean that there is nothing going on!

They don't dislocate or sublux

Um.... it can be hard to know exactly what is going on, as a joint ca sublux and return into place straight away. If she is gettig sudden pain, the joint is collapsing and she is having to go to A&E for the joint to be relocated it certainly sounds like a sublux or dislocation to me! Has someone told you that hips can't dislocate? This is a common urban myth that we come across fairly often!

We've recently seen a physio who suggests it could be the Illiotibial band flipping. Physio seems to be the only answer to this too! She also said that her brain doesn't seem to be telling the correct muscles to move.

This is certainly something that can happen with HMS, both the band flipping or 'snapping' and the body using incorrect muscles. When ligaments become too stretched to stabilise a joint, the muscles have to try to take this over, and sometimes muscles that should me moving the joint try to stabilise it, and other muscles have to be roped in to move the joint. This is a bit basic but gives the general idea of what can happen.
This physio does seem to recognise what is happening with your daughter's hips, does he/she understand HMS/EDS3? Maybe you could show them one of the books? Sometimes we cannot access physios with the right knowledge, but finding one that is prepared to learn is the next best thing!
The hormonal effect on HMS/EDS3 joints is well documented, so your daughter's experience with the implant makes sense. Also, a period of muscle deterioration due to inactivity could well have caused her more recent traumas.
Hope some of this helps.

Rosie

Osteparthritis can occur in a joint that has regular HMS type traumas.
Physio can help with HMS joints, but it does need to be the correct type of physio. Have a read through some of the threads, the search tool can help you find them, for threads about physio, hips, and even about

[mumanddad]

Her Physio is brilliant and does understand EDS. She teaches other physios. I'm sure she's giving the correct advice with the excercises etc but the problem we have is how to excercise when everytime she moves (and sometimes without any movement) she "breaks" as we call it. The she's in A&E for hours. It's been everyday this week! It's hard to cope.

We just wish we could know for sure what's going on inside her hips. I want a different answer to "physio will help"!

[Rosie]

Hi again

Havr you tried speaking to her physio to explain the current issues? he/she may be able to advise on how to cope with the current flair up and whether to attempt the exercises at this time or not.

Rosie

[lil_miffy]

Iv been told by my orthopaedic surgean that my recent hip xray shows 'pronounced wasting of the bilateral femeral neck'.
I had to ask a friend from church who is a hip nurse what it meant but basically it means the the part of the thighbone just below the end that makes the ball of the hip, is wasting away on BOTH legs.
She told me this means Ive got a high risk of fracturing the bone at that point if I fall. Becuause I'm falling alot now this has come of as a shock becuase im suddenly aware that i could potentially end up fratctruing at a place that would need surgery to fix and would cause me significant problems aftewards iwth healing.

I had no idea i had this arrthritis in this area. I thought if there was any arthritis it would be in the actual socket itself.

Does anyone else have this and if so have you had any treatment for it or is it a matter of just praying you don't fracture?
modnote: merged into main hip thread

[Jill]

Last summer I sprained something outside of the hip during the hip abduction exercise prescribed for knee physio. The pain and discomfort lasted for a couple of days and went away. Then I sprained the same thing during swimming and after that it never went away.

If I turn round while walking and put the hand over the painful place something clicks under it. The same happens on the other side, but it is much less painful. I was told that I got hip trochanteritis and small hip dysplasia with sublux, tried exercises (didn't help), chiro (helps for a very short time, then the ligament goes away), icing, anti-inflammatories etc. It always aches during walking (pain became less when I switched to running shoes), sometimes while sitting and lying.

What do I do next? During last year I finally won over knees that were painful while walking, but suddenly got the aching hip instead, that is frustrating. I can't even stand on balance board without pain afterwards and afraid that knees will get away without exercises.

Not sure that the text is clear, but if you have any similar experience, please, share.

[Tibisca]

Hi Jill
You sound very similar to me!
After years of knee problems which were beginning to improve, my hip joined in the fun and games. I think your comment about your running shoes may give part of the answer.
It was when I got inserts for my shoes to stop my feet rolling outwards and support the arches(although my feet were never painful), I noticed that my knee pain had almost gone and my hip problems started to improve.At the same time I also do pilates and have finally got a good physio and I do try to keep up the exercises .
With hindsight it is obvious that if your feet are all over the place it will affect how all your joints relate to each other.It was my pilates teacher who spotted what was going on with my feet when I walked.
Hope this helps,
Tibisca