Finding it hard to cope

[franny]

Hi Everyone,
   I am new to this page, so glad I stumbled across it!
I have hypermobility and have been suffering the effects since I was a child - the worst in my teens when I would suffer full dislocations in my knees and wrists and jaw frequently. I had serious pelvic problems during pregnancy and have sever problems with my knees post pregnancy due to the hormonal changes.
Last wednesday I fully dislocated my left knee cap again! I have had some form of keyhole surgery in Hong kong last time I fully dislocated it when  was 17 and then extensive physio. Since then I have had numerous partial dislocations and what I call slips. My knees also frequently 'go from under me'.

I have been referred to a knee specialist on Friday at Nottingham QMC and was just wondering if anyone could recommend to me what I should expect also what kind of questions I should be asking and about what kinds of procedures/routes I could explore.
I am currently in a leg splint and have been told to stay pretty much immobile however I have major concerns over this as once when I dislocated my right knee cap I was kept immobile for at least 4 weeks in a similar splint which resulted in massive muscle loss and a feeling of total instability in my knee - it also took a year of physio for my to get back anywhere near full strength and I continue to have problems with my right leg.

I am feeling at a pretty low ebb. I am a busy mum of a little girl who is almost 2 and is not yet walking as she has been diagnosed as having hypermobility and low tone also. I can't look after her properly and am unable to carry out the physio that she needs to do whilst I am in this state. I am so fed up of feeling totally useless and forever feeling terrified of dislocating my knee again and having to deal with pain. I feel that I have carried this weight with me for a long time and have only been treated injury to injury and not in regards to this affecting my whole life and the fear of dislocation never being far from my mind. I also would appreciate any advise in regards to my little girl - I really don't want her to go through the same things that I have.

Sorry for the rant and any advice would be much appreciated.

x F x

[Silkncardcrafts]

Hi there,

Sorry to hear that you are struggling.

It sounds like you are frequently experiencing what are called subluxations of your knee cap. There are a lot of things that can be done to help you.

How did your appointment go at Nottingham QMC ?

Keeping your leg immobile for that long is not a good idea as the muscles will weaken.

Have you recently have any physiotherapy ? Seeing someone that has a good understanding of these problems is really important. It is important not to just strengthen your quad muscles, but also your hamstrings and glute muscles too. Over the years I have had quite a few physios give up on me, but then I had some great physios that were excellent, knew what they were doing and closely liaised with my knee surgeon.

Make sure that if you decide to go ahead with surgery it is for the right reasons. Also ensure that the surgeon you specialises in patella problems. The most appropriate types of scans for patella problems are CT scans and plain x-rays. MRIs are useless unless they are looking at the cartilage surfaces.

With hypermobility syndrome it is really important to do some sort of regular exercise. The exercise should be gentle and low impact. Things like swimming, hydrotherapy, clinical pilates and a gentle gym program can all be good. Sometimes walking is an option, but not always.

As for your daughter I would suggest taking her to see a paediatric physiotherapist.

I hope all these ideas all help you. Let us know how you are going.

[franny]

Thank you so much for your reply.

I managed to convince my consultant that I did not want to be immobalised and he agreed so I have been referred to physio. I am currently quite happy with my consultant as he seems to have a good knowledge of hyper-mobility and sees surgery as a last resort in my case as he thinks that with hyper-mobile patients it often causes more problems than good. Am currently much happier with the treatment I am getting as the physios seem to be treating the root problem rather than the injury this time - they are getting me in the gym and putting together an exercise program for me.

It's interesting that you said that CT scans are better for this kind of thing as I was sent to have an MRI so we'll see what that brings up, because I have had quite a few subluxations (starting to get used to the medical terms) I think they wanted to see if I have caused any structural damage. I will ask about other forms of scanning thanks to your info though.

My daughter is getting stronger slowly but surely with the help of a pediatric physio (she's been going for 4 months now). I do find that I get a bit emotional when thinking about her as the older she gets the more she seems to be missing out on with her not walking and I hate to think of her going through what I have.

Thanks again.

[Helenuk]

Hi u poor thing
I too have hypermonilty have two daughters
But my daughters touch wood seem ok
They both swim and have done since they were babies but both compete nationally
I too used to swim and hope to return to it after I am over this bad spell
I can relate to your frustrations I used to feel my daughters lost out because of me
But actually my condition forced me to be a stay at home mum and although over the years I have spent alot of time in. Hospital and sometimes on birthdays I honestly believe they have had better than most kids
I have always been able to be there
Your daughter has the best possible start because she has a mum who understands and can help
Try to focus on what she can do and what you can do for her
The positives you both bring each other
If u or someone you know can get your daughter to a swimming pool get her playing and exercising in the water
It's incredible the freedom the water gives is amaizing
For you too , do your exercises in the pool it's a lot less painful and not having to rely on crutches or braces is lovely
Any help I can offer pls shout
Hugs h x

[franny]

Thanks for your reply H.
I think it is so easy to think about the negative aspects of this condition so I am daily trying to remind myself of all the positive things in our lives. My beautiful daughter may be a little late in walking but I think that it is partly because of that she is so advanced in communicating and she has an incredible attention span for her age as she can't run from one thing to another.
I am so glad I found this forum as replies from people like you make me realise I am not alone, there are other people going through similar and can offer advice and support.
I hope that you are feeling better or are at least beginning to get over the bad spell yo are having. I am also so glad that your daughters are unaffected, I wouldn't wish the guilt I sometimes feel on anyone. You must be so proud of their swimming achievements!
I had the results from my MRI today and it seems that I have very shallow grooves where my knee caps sit so have been referred to another specialist. I have also been referred to orthotics to try and help my ankles. The only way is up!
F
xx