Lax joints worsening recently

[Louise]

hey

not sure if this is the right area but im going through the stages of being diagnosed. ive been to UCLH in London and now waiting for a date to go to inhouse rehab for 2 weeks down Stanmore hospital. they think i have eds but im a mix of types.

my hypermobility has gone wild this past year though. i only really suffered with 1 shoulder and ankles previously but so far in the last 12 months im really struggling with ankles, shoulders, jaw, 1 hip, knees and spine. The fatigue is getting bad aswell. some days il be fine but others i cannot wake up even after 9 hours sleep. if i go to work ok il be yawning by 2pm and by 4pm il be struggling to keep my eyes open then by the time i get home il hit the sofa and just flake completely out.


ive just turned 29 and work full time and im a single mum. im now starting to find it all hard but i want to buy a house so im trying to work hard. does it all just start going down hill like this from now on and should i expect the rest of me to fall apart? having a very down day as my disk has popped in my back for the 4th time since sept and iv i walk all i feel is my hip clicking along with siatica. arrrggghhh

sorry

[Blaadyblah]

Hi, first things first - don't panic - it isn't all downhill from anywhere! HMS/HEDS is not progressive and can be successfully managed (though this is different for everyone, it can take a while to work out how and is trial and error till you get it right.

That said, you can get a sort of chain reaction of problems especially if you're run down or trying to do too much and at those times it can definitely look as though things will never improve. We see a lot of that here on the boards because people tend to post more about problems they're having than about their successes.

Most adults seem to be diagnosed when they're having a run of bad symptoms they just can't stay on top of anymore. For me some things have got better and some worse over the years, most things are a problem for a period but do improve eventually - the difficulty is avoiding getting run down when you never really quite get the chance to recover fully. If you do a search for 'pacing' (check the 'in topic titles' box on the advanced search). You might want to have a look for 'flare' too - as a pile up of symptoms is often referred to that way. For individual joints and symptoms there are usually dedicated topics.

Between physio, pacing and pain management you can make huge improvements to how well you feel, orthotics can help too and I've found now I know (mechanically) why things get hurt I'm more able to avoid getting hurt (where before I would plough on ignoring an injury because it didn't make sense that there was one).

[Louise]

Thanks for that

It does seem that everything is happening one after the other. im trying to get fit as im overweight which isnt helping but the more i try the more i hurt lol, its like a nasty cycle.

il do a search for those and see what coes up and have a good read. I need to do something cos im getting stick at work about my amount of time off, they dont understand any of it and just call me lazy

[Purplesheep]

Hi Louise - if HMS/EDS significantly affects your ability to do day-to-day things, that means it is legally recognised as a disability, and you are protected from discrimination at work (and elsewhere) under the Equality Act 2010. It can be strange at first to accept that you are disabled, but it is really important that you let your manager now formally, and ideally provide medical evidence such as the hospital reports from UCHL. Your workplace then have to take it seriously and look into making reasonable adjustments for you, eg equipment to help you do your job, sharing/changing your duties, considering reducing your hours, etc. If they do not do this or in any way imply that you are making this up or being lazy, this means you can potentially take them to court for disability discrimination. It doesn't protect you completely from being fired for having too much time off, but it makes it a lot harder for your employer to do this, as they need to show that they tried everything they can (within reason) to keep you in the job.

If you still have problems after officially declaring your disability, Citizens' Advice Bureaux are usually quite good at giving advice on these matters, and also the Equality and Human Rights Commission helpline is really fantastic. I have used them quite a few times in recent years and they are so helpful!

Hope things get better for you soon!

[lollipop]

Hi Louise,

You've wrote your post about me. I know how your feeling. I've had time off from work and been moaned at. Yet on the other hand told to take what time I need to get myself better.

Like yourself I'm shattered by 2pm and come 4pm, it's a don't talk to me as I'm then horrid! If I could solve the tiredness then I'd cope with the pain and everything else.

Keep going and don't let work get you down. The guys here are fab for support!

[Louise]

hey.
im starting to go for a powenap in the car at lunchtime which sort of refreshes me but i get the lads at work coming and knocking on the window to wake me cos its funny.

they just dont understand how hard it is to overcome this fatigue do they. keep going though x