Advice much appreciated

Hello all,

I am 20 years old. Live as a lodger (i.e. sharing with my landlady) and work full time.

I've recently been diagnosed with Hypermobility Syndrome which greatly affects my upper body.

I'm struggling immensely with going to work, shopping, doing housework, sleeping and leading a social life. Never mind anything else. My condition has been much worse recently and I don't think I can cope with these things as small as they are. It's incredibly frustrating.

I am seeing a Physiotherapist for excercises, trying out pain killers and waiting to be referred to a specialist. The only thing that makes my pain managable are the disposable heat patches you can buy in chemists.

I've been looking into benefits etc. as I'm struggling with the costs associated with my condition. I understand that a DLA claim is unlikely to be successful as they make it hard and seem to only award you money if you have trouble with your lower body/doing particular things.I understand that Tax Credits may be available if I meet particular requirements. I live in Walkley and work in Firth Park, can anybody advise me of where I should go to get decent advice please? I don't want to give up work but I don't know how much longer I can handle it. My last GP said 'Oh, so does this Hypermobility thing affect you much?' so I'm concerned that I won't get signed off sick. I've also wondered about how you get 'Registered Disabled' as it may help me sort my life out. In terms of benefits etc. it may help to know that I'm receiving counselling for OCD.

Please accept my apologies for the length of this topic. My Mum was disabled but died 2.5 years ago so cannot help me with information. Im new to all this and trying to come to terms with my problems. Any information is welcome.

Thank you

SMSM

Hello all,

 

I am 20 years old. Live as a lodger (i.e. sharing with my landlady) and work full time.

 

I've recently been diagnosed with Hypermobility Syndrome which greatly affects my upper body.

 

I'm struggling immensely with going to work, shopping, doing housework, sleeping and leading a social life. Never mind anything else. My condition has been much worse recently and I don't think I can cope with these things as small as they are. It's incredibly frustrating.

I'm hypermobile too. How is it affecting you?

I am seeing a Physiotherapist for excercises, trying out pain killers and waiting to be referred to a specialist. The only thing that makes my pain managable are the disposable heat patches you can buy in chemists.

 

I've been looking into benefits etc. as I'm struggling with the costs associated with my condition. I understand that a DLA claim is unlikely to be successful as they make it hard and seem to only award you money if you have trouble with your lower body/doing particular things.

Not necessarily, but for hypermobility, it could be difficult, as you would be looking at the mobility component, rather than care.

I understand that Tax Credits may be available if I meet particular requirements. I live in Walkley and work in Firth Park, can anybody advise me of where I should go to get decent advice please? I don't want to give up work but I don't know how much longer I can handle it. My last GP said 'Oh, so does this Hypermobility thing affect you much?' so I'm concerned that I won't get signed off sick. I've also wondered about how you get 'Registered Disabled' as it may help me sort my life out. In terms of benefits etc. it may help to know that I'm receiving counselling for OCD.

To be honest, I'd contact Access to Work, via Bailey Court Jobcentre as you're working. You may get hekp with a new chair, or travel if that's a problem There is no such thing as 'Registered Disabled' really, but speak to AtW, as you can get help to stay in work through AtW. Ask for the Disability Services Team, and then Access to Work.

Please accept my apologies for the length of this topic. My Mum was disabled but died 2.5 years ago so cannot help me with information. Im new to all this and trying to come to terms with my problems. Any information is welcome.

 

Thank you

No worries, and take care.

I'd never even heard of hypermobility, so I had to do a search on NHS Direct to find out about it.

I'm afraid I can't do much to help or advise you, except to say, welcome to the Forum and you'll find this particular section a great source of help (from resident experts!) and support (from those of us who know nowt about your particular condition, but can empathise anyway, because we have our own problems!).

You might find it helpful to find some online groups/support for hypermobility, as "speaking" to other people with the same problem can be useful and supportive, because they understand what you're going through. At least, that the way it works for me with depression

Happy Hippy -

Thanks for your quick reply.

The Hypermobility affects my upper body mostly. Occasionally my knee (about once a year). My shoulders,neck,head (not sure how), elbow and wrists are affected most. I have to click them into place constantly and that's where I feel pain. I also have no re-action to local-anaesthetics (side effect of condition) which is interesting. Another major issue is that 'i don't know where my body is in space' so I'm constantly dropping things/bumping into things. I'm not coping at the moment with work but I do have a special chair for my desk which my employer bought. They're quite good at trying to accommodate me but there are some issues I can't think of a solution for (i.e. I have to regularly lift heavy folders).

I may be looking at the care component of DLA as I struggle a lot with housework/shopping and things like drying my hair I find difficult.

I've rung up to try and make an appointment at Job Centre but their system is down. Financial help would be of great benefit to me but I'm also hoping for some general advice about other things.

I hope you don't mind me asking, but how does Hypermobility affect you? Have you successfully got help of any kind? Maybe I'll get more advice if I see the consultant I'm being referred to. Something like Occupational Therapy may help.

Take care, Mary

Dozy-

Thanks for your reply.

There is the Hypermobility Syndrome Association website which is full of resoures and has a forum. I think I need to pay for membership to post on the forum though.

SMSM

Hi there! I have hypermobility syndrome (HMS) as well - I was diagnosed by Professor Bird at the clinic in Leeds. If you haven't done so already, it might be worth asking your GP to refer you to his clinic. It's the only one outside of London within England (there's another in Glasgow) and he will be able to refer you for physiotherapy and occupational therapy, although it may have to be done in Leeds as not many physiotherapists are experienced in treating hypermobile patients. You can get the details of the clinic to pass on to your GP from the Hypermobility Syndrome Association website.

I've had to teach my GP a lot about the syndrome, as unfortunately it's not very well known. I'm going to have a chat with her about DLA and a mobility travel pass, but I'm not all that hopeful. I do know that HMS is on the list of conditions in the Disability Handbook used by DWP advisors (I found it on the internet!) but it concentrates on the mobility aspect. Luckily for me, I can manage most things, although the condition causes me a lot of pain, and I haven't yet found any painkillers that work, and I refuse to try anti-depressants (apparently these have been shown to help in small doses).

Good luck!

P.S. Can anyone please explain to me how to go about claiming DLA and a mobility bus pass etc without feeling guilty about it when you've been brought up to believe that it's for people in wheelchairs?

P.S. Can anyone please explain to me how to go about claiming DLA and a mobility bus pass etc without feeling guilty about it when you've been brought up to believe that it's for people in wheelchairs?

Just remind yourself that the Government is very disinclined to give anybody anything unless they really need it! And, even then, they might be inclined to turn them down anyway.

There are plenty of people with disabilities who are eligible for a mobility bus pass, etc, without being in a wheelchair. If you look at some of the other threads on the subject, you'll see that some of them have been subject to ill-informed glares, criticism, etc, because they have a blue badge but no very obvious reason to have one.

A friend of mine gets DLA, blue badge, etc, but if you looked at him you'd never think he was disabled, as he's not in a wheelchair, doesn't walk with sticks, and has no immediately apparent mobility problems. However, he's in constant, severe pain from a back injury, can't walk far, can't sit down for long periods, can't stand up for long - you'd think he had St Vitus dance when he comes round, as he's constantly standing up, walking around, sitting in another chair, etc.

So stop feeling guilty, you really don't need to.

Hi I've got chronic M.E and don't look disabled either. Some of your symptons are similar to mine so I can empathise. I have the mobility component now but it did take a number of years to achieve it. I think an occupational therapist could be helpful to you. Also if you are in a lot of pain ask to be referred to a pain specialist because there are a lot of different options these days for pain management.

Hi there! I have hypermobility syndrome (HMS) as well - I was diagnosed by Professor Bird at the clinic in Leeds. If you haven't done so already, it might be worth asking your GP to refer you to his clinic. It's the only one outside of London within England (there's another in Glasgow) and he will be able to refer you for physiotherapy and occupational therapy, although it may have to be done in Leeds as not many physiotherapists are experienced in treating hypermobile patients. You can get the details of the clinic to pass on to your GP from the Hypermobility Syndrome Association website.

 

I've had to teach my GP a lot about the syndrome, as unfortunately it's not very well known. I'm going to have a chat with her about DLA and a mobility travel pass, but I'm not all that hopeful. I do know that HMS is on the list of conditions in the Disability Handbook used by DWP advisors (I found it on the internet!) but it concentrates on the mobility aspect. Luckily for me, I can manage most things, although the condition causes me a lot of pain, and I haven't yet found any painkillers that work, and I refuse to try anti-depressants (apparently these have been shown to help in small doses).

 

Good luck!

 

P.S. Can anyone please explain to me how to go about claiming DLA and a mobility bus pass etc without feeling guilty about it when you've been brought up to believe that it's for people in wheelchairs?

Hi there,

Thanks for that. I'm already being referred to Professor Bird, just waiting for an appointment. I'm seeing a physio in Sheffield but think occupational therapy may be helpful. Did you find Professor Bird useful?

SMSM

you may like ot try http://www.sheffieldadvicelink.org.uk/index.php for inof on disabilility benefits.

there's an advice phone line

also consider putting your name on the council housing list for the future.

best wishes

Hi there,

 

Thanks for that. I'm already being referred to Professor Bird, just waiting for an appointment. I'm seeing a physio in Sheffield but think occupational therapy may be helpful. Did you find Professor Bird useful?

 

SMSM

Glad to help

I found Professor Bird really helpful, if a little distant (although I did have the last appointment of the day!). I was referred to a physio in Leeds by him, and seen by the occupational therapists on the same day. They offered me lots of support, but at the time my symptoms were quite slight, so I didn't need any. I mostly wanted to see Professor Bird for a proper diagnosis and some advice on pain relief and what to expect from my condition in pregnancy and afterwards as my husband and I were planning a family.

He is the foremost authority on pain relief in HMS sufferers in the UK (or was when I saw him) so he should be able to give you lots of good advice - I'd already tried everything he suggested apart from antidepressants, and I wasn't willing to try them.