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Joint Hypermobility Syndrome help!

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Messages: 1 - 22 of 22
  • Message 1. 

    Posted by gail (U14844947) on Tuesday, 7th June 2011

    Hi,
    After years of pain, depression and extreme tiredness my Hubby has been diagnosed with Joint Hypermobility Syndrome.

    The Consultant explained alot, and after reading some booklets we were given, the diagnosis in itself explains so much, but I was wondering if anyone had any first hand info/knowledge on the illness and it's implications.

    The main pain is in his knees, (he has trouble walking and uses a stick), but also has pain in his right shoulder, feet and sometimes his hands.
    This also explains the dizzy spells, and why his knee gives way and he sometimes falls.
    Any info would be greatly appreciated
    Thanks
    Gail

    Report message1

  • Message 2

    , in reply to message 1.

    Posted by jaimelicious (U12745229) on Tuesday, 7th June 2011

    Yup, me too, dx'd about a year ago.

    To date, I have received precisely *no* help for it, so I can't offer much, sorry!

    I also walk with a stick, have problems with shoulder and neck as well, fall a lot... it's not much fun.

    There are a lot of bendy folks on here, all of whom know more than I do, so hang on and I'm sure someone will be more useful than I've just been!

    Report message2

  • Message 3

    , in reply to message 1.

    Posted by ditchdwellers (U12199407) on Tuesday, 7th June 2011

    Hi Gail,

    I'm glad your husband has now got a diagnosis. There are quite a few of us here who waited years for the correct diagnosis and I understand how frustrating it can be.

    I have Ehlers Danlos Syndrome, which is a connective tissue disorder. It is thought by some doctors that Hypermobility Syndrome and EDS are the same thing.

    For more information you may find the Hypermobility Syndrome Association www.hypermobility.or... helpful. They run residential weekends which I found really interesting and useful when I was first diagnosed. My husband also found it really worthwhile going along.

    Has your husband been given any follow up treatment? He may find physio helpful, however, it is essential that he finds a physio who understands hypermobility as we don't function quite like normal people! I find hydrotherapy most helpful to me, and you may be able to get a referral through a physiotherapist.

    I need to use braces and supports on my wrists, fingers, knees and ankles. I see an Occupational Therapist (referral via GP) and an orthotist for my splints, braces and supports. They help maintain some of the functionality of those joints that dislocate frequently and help in reducing the pain.

    You can also get aids and equipment through your social services department. I have had a variety of different things from them, the most useful being a bath lift.

    It is mainly a question of trying to manage the hypermobility as best you can, and this may take a while and a bit of trial and error to find what works best for your husband. You may need to be forceful at times to ensure that you both get the help and support you are entitled to.

    I hope this helps. There will probably be other EDS'ers along who can offer further advice.

    Rachel

    Report message3

  • Message 4

    , in reply to message 3.

    Posted by jaimelicious (U12745229) on Tuesday, 7th June 2011

    sorry to derail the thread slightly...

    ditchdwellers, would you mind telling me what equipment/aids/adaptations you have and what they help with? I'm trying to organise some helpful gadgets for myself but don't have a clue where to start.

    currently, I have a couple of badly-positioned grab-rails (thanks, substandard council workmen!), a bed lever, an electric can opener/knife sharpener and a walking stick.

    I keep getting told I can't have braces/splints/supports because they'll weaken my muscles - did you get told this? what made them change their minds?

    Report message4

  • Message 5

    , in reply to message 3.

    Posted by gail (U14844947) on Tuesday, 7th June 2011

    Hi Rachel,
    Thank you so much, this was very helpful.
    It's such a relief to finally have a diagnosis, but also a bit scary!
    Hubby is still under the physio, has been for a couple of years, and is due to go again next week, so fingers crossed the physio knows about 'jhs'

    I think the next time we visit the gp we will ask what help is available,- again thanks - I didn't know about the occupational therapist
    Best wishes
    Gail

    Report message5

  • Message 6

    , in reply to message 4.

    Posted by ditchdwellers (U12199407) on Wednesday, 8th June 2011

    Hi Jaimelicious,

    The first OT I had, arranged for me to have a perching stool (which I haven't found works for me), a teapot & kettle tippers, an electric can opener, a bed rail (which is fantastic for helping me haul myself out of bed), and a bath board. The OT department at the hospital went through a lot of different aids with me and demonstrated to me how they work. Some of the things I bought myself, such as cutlery with built up handles (I like the Good Grips range), and kitchen knives with vertical handles which make holding them much easier. I also bought some non slip Dycem mats to hold crockery and jars in place when trying to use them. I have bought most of the additional aids through a catalogue - your OT should be able to point you in the right direction. An independent living centre may be able to demonstrate a range of aids and equipment for you. www.assist-uk.org/as... There may be things there that you didn't know exist, that are just the thing you need!
    It's worth shopping around as the prices vary considerably, and don't forget to sign the VAT declaration so that you can purchase the items you need VAT free.

    Since then, I have had a Mangar bathing cushion to replace the bath board, as I needed more help with getting in and out of the bath safely. I have also had some grab rails installed by my door. I don't have any stairs so that's not something I have had to deal with.

    As far as splinting goes, I went through an OT for my wrist braces and finger splints. The woman I see specialises in hands and measures my grip strength and pinch strength each time I see her to check if there is any change. She made me resting night splints which are great. We also spent quite a bit of time trying different wrist splints until we found the ones that work best for me. The finger (ring) splints help to prevent deviation in the finger joints and help prevent hyperextension. I now have arthritis in my hands quite badly now, so having 6 monthly checks helps to keep an eye on changes. My rheumatologist is very happy to leave it to the OT to decide how best to support my hands.

    I have found that physios tend to be very anti splinting, and so I bypass them if I think I need a new brace etc. My GP refers me directly to an orthotist and I have found them to be much more helpful and willing to work with me to find a suitable solution. I have read all the arguments about the splinting causing muscle wastage and have decided that for me, the best option is to splint. Without them I would not be able to carry out half as much as I do, so the choice for me is an easy one to make.

    If you have a helpful GP, then it will be easier to get referred to an OT (not a Social Services one) and an orthotist. I felt very alone and lost before I met my OT. She has been brilliant and has worked with wheelchair services and the orthotist to help me out. She also helped with my DLA form.

    Hope you get what you need,

    Rachel

    Report message6

  • Message 7

    , in reply to message 6.

    Posted by gail (U14844947) on Wednesday, 8th June 2011

    Hi again,
    Sorry, more questions....
    You mentioned your Ot helped with your Dla claim, just thought, Hubby has a claim in progress at the moment,- declined, and we appealed, home visit last week from one of their doctors (same with Esa) - should we inform the Dla & Esa of this new diagnosis? Or would that just complicate things?
    Grrr minefield!

    Jamielicious;- I can't believe you haven't had much help, I wish you luck x

    Report message7

  • Message 8

    , in reply to message 7.

    Posted by ditchdwellers (U12199407) on Wednesday, 8th June 2011

    Hi Gail,

    I've not had any experience of DLA appeals, as I am one of the lucky ones whose claim went through easily (I get MRC & HRM indefinately). It may be better to post another question just about the appeal as there are loads of people here who have been through appeals and may be able to advise.

    I realised I had forgotten to tell you about the help you may be able to receive as a carer. You are entitled to a carers assessment from Social Services and they may be able to signpost you to sources of support and help. They paid for my husband to get in a cleaner for a couple of hours a fortnight and helped him to put an emergency plan in place so that if he was taken ill, I would get the help I need. It has given him a bit of peace of mind and he doesn't worry as much as he used to.
    It's important that you look after yourself. Being a carer can be isolating and exhausting. http://www.carers.org/

    Rachel

    Report message8

  • Message 9

    , in reply to message 1.

    Posted by dizzymel (U14862996) on Thursday, 9th June 2011

    hi

    i have just been diagnosed with this syndrome today and it is a relief i finally know what is up with me.... i would advice like i have just done gone to the hypermobility syndrome association it really does give great tips and information...


    Report message9

  • Message 10

    , in reply to message 1.

    Posted by DavidG (U2600889) on Thursday, 9th June 2011

    >> I was wondering if anyone had any first hand info/knowledge on the illness <<

    On Ouch!, it sometimes seems like every other person is one of us bendies!

    There's a whole spectrum of effects here, so don't assume that if one poster is affected in a certain way that your husband necessarily will be. For instance I score almost nothing on the older test for HMS, because my hands aren't really affected at all, the big effects for me are hips, pelvis and spine, which traditionally didn't score anything.

    HMS is generally said to be equivalent to Ehlers-Danlos Syndrome type 3, which is about the most benign EDS variant, but some of the EDS folks here have other types, so again there's that spectrum of effects that might not apply.

    Report message10

  • Message 11

    , in reply to message 10.

    Posted by gail (U14844947) on Saturday, 11th June 2011

    Hi again
    I have had a good old search on the net, and like you say, there seem to be alot of different effects.

    I am extremely happy that a diagnosis has been made which covers Hubby's symptoms, but I think the best thing for us for now, is to only search for related problems relevant to current condition/symptoms, and take one day at a time.

    When it's something you have never heard of you tend to search *everything* ! - My searches have of course helped, but it is a very personalised illness by the looks of it,... so baby steps for now.

    Found the phone number of our local OT service, so first step is to see what help they can offer.
    Physio for Hubby next week, fingers crossed for a good excercise regime.
    Thanks for everyone's help
    Best wishes x

    Report message11

  • Message 12

    , in reply to message 7.

    Posted by Sofie2 (U14259204) on Saturday, 11th June 2011

    should we inform the Dla & Esa of this new diagnosis? Or would that just complicate things? 

    Only if there were care and /or mobility needs at the time of the claim. The diagnosis is irrelevant.

    Report message12

  • Message 13

    , in reply to message 1.

    Posted by honey3680 (U14719841) on Saturday, 11th June 2011

    my son was diagnosed with hypermobility joint syndrome when he was seven. he is now 18 and has just finished his A levels as a result he fingers and wrists are so painful he cant do any more writing not even typing and so far apart from painkillers he doesnt get any help.

    Report message13

  • Message 14

    , in reply to message 7.

    Posted by concernedcitizens (U14441374) on Friday, 24th June 2011

    Hi
    If it's not too late for you I would say yes inform DLA of new diagnosis as they need all info you can give them and it should help. Are you getting help from a 3rd party for the appeal such as CAB or DIAL? if so contact them with new info, they will also advise you.
    I have had this condition since the year dot and and have only just received correct diagnosis, although in saying that it was diagnosed back in1994 but the Specialist I saw never bothered to inform my GP, but after years of persistence I saw a new specialist last year and there it was in files from way back when!
    It is a huge relief to have the correct diagnosis and will help in all areas, well as long as the people you see understand it, but you soon get to know who does and doesn't.
    Hope it all works out for your husband most importantly don't give up!

    Report message14

  • Message 15

    , in reply to message 14.

    Posted by gail (U14844947) on Friday, 24th June 2011

    Hi,

    Yes we are having help from the CAB, and we have informed the Dla/Esa although they were not particularly interested in the diagnosis.
    The fact remains that this is the reason for all of the pain, fatigue, depression etc, and that it will not go away.
    We had never heard of it before and as you say a huge relief to have a diagnosis, Hubby has said for years there was something else going on.- the only trouble is that it leads to so many more questions!
    I have printed information from the Hmsa website for the appeals tribunals and Hubbys Gp-
    -- he had never heard of it, but think he will find out as much as possible as he has been great over the years- and the physio had heard of it but never treated it.
    Thank you for your reply, and to everybody on the Ouch! site, we probably would have given up the fight long before now if it wasn't for reading various posts and knowing we are not alone fighting this vicious system

    Report message15

  • Message 16

    , in reply to message 5.

    Posted by Ironic John (U14258694) on Friday, 24th June 2011

    Here I shall quote my daughters consultant

    " Physiotherapy carried out by a physio who is not specialised in HMS can do more harm than good"

    John

    Report message16

  • Message 17

    , in reply to message 1.

    Posted by hypermobility500 (U14920831) on Tuesday, 28th June 2011

    Hi,
    After years of pain, depression and extreme tiredness my Hubby has been diagnosed with Joint Hypermobility Syndrome.

    The Consultant explained alot, and after reading some booklets we were given, the diagnosis in itself explains so much, but I was wondering if anyone had any first hand info/knowledge on the illness and it's implications.

    The main pain is in his knees, (he has trouble walking and uses a stick), but also has pain in his right shoulder, feet and sometimes his hands.
    This also explains the dizzy spells, and why his knee gives way and he sometimes falls.
    Any info would be greatly appreciated
    Thanks
    Gail 
    Hi Gail

    Yes we can help why not visit www.hypermobilityuk.org. Also you need to email hypermobilityuk@btinternet.com , I have actually lived with the condition since 1996 so i am fully aware of the problems and many life adjustments etc

    Report message17

  • Message 18

    , in reply to message 17.

    Posted by gail (U14844947) on Wednesday, 29th June 2011

    Hi
    Thanks for that, will show hubby later, I think being a member will be helpful.
    May I ask how you have managed your hypermobility?
    Does physio help?
    Hubby is in so much constant pain/discomfort, is there any relief from it?
    Sorry, so many questions, we were just given a leaflet and don't really know what to do next!
    I did phone the local council for advice on a 'manual handling' course - Hubby has difficulty getting up if he falls, so thought this would be good for me & the kids,- the lady was really nice and we ended up having an OT assessment.
    Thanks again for the reply
    Gail

    Report message18

  • Message 19

    , in reply to message 18.

    Posted by KiraEdna (U5930320) on Thursday, 30th June 2011

    so many bendies on here!
    It is a relief to finally have it confirmed that the pain it not meant to be normal!

    Report message19

  • Message 20

    , in reply to message 13.

    Posted by DavidG (U2600889) on Friday, 1st July 2011

    my son was diagnosed with hypermobility joint syndrome when he was seven. he is now 18 and has just finished his A levels as a result he fingers and wrists are so painful he cant do any more writing not even typing and so far apart from painkillers he doesnt get any help.   It's possible you may already know this, but...

    If he's going on to university then he needs to apply for Disabled Student Allowance, which should cover the cost of speech recognition software, and potentially the computer to run it on. Unfortunately local FE colleges aren't under the same arrangement, so he would have to see if the college will help, but in both cases the organisation needs to be aware of his difficulty recording information, in order to make due allowance in exams by allowing him extra time or other appropriate reasonable adjustments. It would also be reasonable to ask for copies of the lecturers notes rather than struggling to try and record all the information during lectures, in some cases DSA might even fund someone to take notes for him.

    If his A-Level results aren't as good as expected, and his difficulty getting the information down was an issue, but hadn't previously been made known to the exam board, then you should immediately draw it to their attention, explain that you hadn't previously been advised of your sons right to reasonable adjustments under the DDA/Equality Act and ask for them to make a reasonable adjustment to the marking to take into account his difficulty in recording his answers.

    Report message20

  • Message 21

    , in reply to message 15.

    Posted by DavidG (U2600889) on Friday, 1st July 2011

    >> Yes we are having help from the CAB, and we have informed the Dla/Esa although they were not particularly interested in the diagnosis. <<

    They are theoretically focussed on symptoms rather than diagnoses, but HMS needs to be handled carefully with them. They have a handbook which says HMS isn't normally disabling, so you need to be quite clear in discussing it that your husband's does have HMS to disabling levels. Equally some of the tests in the WCA are based on things like touching your toes or picking things up from the ground, which is trivially easy for many people with HMS, but is actually a symptom of the damaged connective tissues rather than the sign of normal functioning that the WCA assumes it to be. When asked these questions your husband needs to be primed to make it clear that he is at danger of falling over if he does these, not to say that he can, the tests are positively designed to lure people into incomplete answers. I would also try and get supportive evidence from the consultant who diagnosed you husband's HMS and insist that it be included in the assessment. If the assessment then goes against your husband, ask to speak to the 'decision maker' responsible and state that you are going to appeal, but want to know why the medical evidence from his consultant was discarded, which may be sufficient to force them to re-evaluate their decision short of taking it to tribunal.

    Report message21

  • Message 22

    , in reply to message 21.

    Posted by gail (U14844947) on Saturday, 2nd July 2011

    Hi David,

    You make some very good points which I hadn't really thought about.
    Unfortunately the diagnosis has come a little late, Hubby is already at the appeal stage for Esa and Dla, we are awaiting a tribunal date but we do have help from the Welfare Benefits - the lady we have seen seems to be on the ball.

    We have been able to include some paperwork on Joint Hypermobility and will be asking if they will take this into account as although it wasn't on the original claim, it is the reason/explanation for all of the pain, depression, fatigue etc

    We have asked for a copy of the report from the consultant, nearly 4 weeks later we are still waiting, but we are hopeful it will be helpful for the appeal.

    All of this is not helping the depression side of things for my Mr, and having to go somewhere out of his comfort zone (e,g. our house) and speak to strangers is quite daunting.
    Even though it has gone this far, could we ask for it to be looked at again before actually having to attend a tribunal?

    I can see why people just give up on claiming benefits, they make you feel like you have no rights to question their decision
    Thank you for your reply, your advice is very much appreciated

    Report message22

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