Newbie from Brizzle

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Newbie from Brizzle

Postby minniem » Thu Jan 19, 2012 10:38 pm

Hi everyone,

I'm Leah, I'm 23 and from Bristol :) I've been looking and the site for a couple of months and thought I would say "Hi" *waves*.

I haven't been diagnosed with HMS but have been told by Physios, Doctors and my knee consultant that I am hypermobile, I also am very flat footed (no arch at all).
It all started when I was 15 and first dislocated my knee. I was fine for a couple of years but then when I was on holiday, it popped out again. I had knee surgery in 2008 and am waiting to have an operation on my other knee this year (have had a couple of subluxes). For the last few years I have noticed more pain that has gradually got worse. Some days I dont feel to bad (after a 12 hour sleep :s) my legs and lower spine just feel achy. But there are other days when I can hardly walk when I have done too much (I went to London to see a show and obviously overdone it when shopping :o - I do enjoy shopping! The next few days, I could hardly move, my legs felt painful, like jelly and weak and my hips and back were also painful). I cant drive very far out of town because of the pain and my legs start to "play up" and dont feel they are doing what they are told :roll: I only work part-time in an office (and sat down) but at the end of the day I am in pain and feel very tired.
I saw a doctor last year because I had really bad hip pain for more than 2 weeks (which started after I had an MRI - I wasn't even moving!), it was a locum who was very lovely and sent me for an x-ray straightway and prescribed me codeine. I then went back to a different doc who told me the x-ray was clear although it doesn't show muscle. This doctor just told me to exercise more, when I replied that I am in alot of pain when exercising, they argued that I should just do lots of exercise :@ Frustrating.
I have been again today and this doctor was lovely. They are going to do some more blood tests on Thyroid (done already and normal), vitamin d & something else :lol: .
I just feel so fed up, I am not a very confident person and just feel like nobody listens sometimes which makes me feel upset.

Thanks for reading :)
Leah x
Leah
minniem
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Re: Newbie from Brizzle

Postby sheppeyescapee » Fri Jan 20, 2012 12:23 am

Welcome to the boards! I hope you find answers to the questions and the help that you are looking for. We have a local group in Bristol that meets every 6-8 weeks. :bye:
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: Newbie from Brizzle

Postby dragondee » Fri Jan 20, 2012 3:16 pm

You need to build up the exercises very slowly.

I've had to take 8 weeks off cos of various health probs (mine and mums), I've just started to get back into routine (slowly) and my back's gone into spasm. So three days of severe pain one osteopath treatment, one day not so bad, today bearable to come to work, another osteo treatment tomorrow then start exercises again even slower.

C'est la vie.

I find swimming good, but unlike Barkingmad I could only do 14x 12m, exercises, 10x12m exercises 6x 12m. I think Barkingmad was doing 30 x 25 or 33m lengths at a time and it took me three years to get up to that.

Good luck and remember slow, slow, not quick quick, slow.

Take care
Dragondee
diagnosed Feb 2006 aged 56 after 10 years of increasing pain and reduced mobility.
Grandmother to Charlotte (July 2010) and Eliza (March 2013)
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Re: Newbie from Brizzle

Postby trekster » Fri Jan 20, 2012 4:00 pm

I agree with Dragondee, welcome to the forum, i attend the bristol meet ups on a regular basis.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
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Re: Newbie from Brizzle

Postby minniem » Tue Jan 24, 2012 10:46 pm

Hi guys,

@Dragondee: Thanks for the advice and I hope you are feeling a little better soon. x
Thank you all for the welcome wishes. I will be looking into the Bristol meet up :)

Take care x
Leah
minniem
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Location: Bristol

Re: Newbie from Brizzle

Postby minniem » Fri May 04, 2012 12:13 am

Thought I would post an update!

I finally got a referal to the HM Clinic in Bath, woo hoo! I did my own research and gave it to the doctor. She referred me to the Musculoskeletal Assessment and Treatment Service but they referred me straight on... Yippee! The only down side is that the appointment is on my birthday, but who cares lol. :lol:
I had knee surgery on Friday last week so am pretty much housebound at the moment (joy!). My hips are already playing up, I wish I could click them but its a bit difficult relying on one leg!! My wrists are feeling the strain too but hey ho, fingers crossed for a good outcome!

Hope everyone is well (as well as a bendy can be!) and thank you all for the support! x
Leah
minniem
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Re: Newbie from Brizzle

Postby trekster » Fri May 04, 2012 3:39 am

Anytime Leah and I hope you get your diagnosis. I got my motorbility car on my mates birthday, hes on here.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
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Posts: 1479
Joined: Wed Aug 17, 2011 9:45 pm
Location: near Bristol

Re: Newbie from Brizzle

Postby cracker » Sun May 13, 2012 10:23 pm

hiya welcome to the bords hope u find answers to your questions the forum is great!! :bye: :bday:
Diagnosed with HMS July 2011. at age 31by my physio & HMS EDS3 & pots the 28 March 2013 age 32 by Prof Grahame.
i have a good sence of humer
dyslexia,asthma ,mild learning disabitys ,mild ibs,mild scoliosis and
part time cruches user x
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Re: Newbie from Brizzle

Postby minniem » Sun Jul 01, 2012 8:45 pm

Hi guys,

I finally got diagnosed! :dance: I feel like a weight has been lifted off my shoulders and just knowing that it wasn't "all in my head" makes me feel a whole lot better! It will be nice to say to the doctors that I knew what I was talking about after all. :lol:

Most of all, thanks to you guys for your support. I wouldn't have got this far if I hadn't looked at these forums (and googled a bit :o). x
Leah
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Re: Newbie from Brizzle

Postby cracker » Sun Jul 01, 2012 9:57 pm

you're welcome minniem anytime :hug: :bye:
Diagnosed with HMS July 2011. at age 31by my physio & HMS EDS3 & pots the 28 March 2013 age 32 by Prof Grahame.
i have a good sence of humer
dyslexia,asthma ,mild learning disabitys ,mild ibs,mild scoliosis and
part time cruches user x
User avatar
cracker
Carpal tunnel
 
Posts: 1465
Joined: Thu Mar 01, 2012 9:35 pm
Location: Rainham Kent

Re: Newbie from Brizzle

Postby trekster » Fri Aug 03, 2012 1:42 am

Congrats you're officially a bendy :-)
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
trekster
Carpal tunnel
 
Posts: 1479
Joined: Wed Aug 17, 2011 9:45 pm
Location: near Bristol


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