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Date: 20.03.2014
From: karen

Subject: Connective tissue disorder anyone?

Would love to chat with anyone who had been dx or going through a dx, like me

Thanks

Karen
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Date: 20.03.2014
From: Sean

Subject: Re: Connective tissue disorder anyone?

Hi Karen

I have had AS for over 30 years - AS is a disease of the connective tissue that results in the inflammation of the joints, ligaments and tendons in the spine, the hip and the extremities.

I do lots of stretching / breathing exercises to keep my rib cage and back as supple as possible.

I find light weight training with lots of repetitions good for my condition. I also find hanging to stretch helps!
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Date: 21.03.2014
From: karen

Subject: Re: Connective tissue disorder anyone?

Hi Sean

Drs are just trying to pinpoint what one I have, looks like Im back on the mtx soon

Do you take it?

Thanks for the tips on the stretching, Ill give it a go once Ive recovered from this flare

Can I ask, has your condition stayed the same over the years or has it progressed?

Thanks for answering my post

Karen
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Date: 21.03.2014
From: Sean

Subject: Re: Connective tissue disorder anyone?

Hi Karen

Which joints are affected for you.

My Ankylosing Spondylitis issues started in my central back / shoulder blade areas and neck when I was about 18. Then I had shoulder joint pain. I was also a bit non flexible in PE at school - but was quite sporty! My mother took me to a private clinic at age 19 - "Burghwood Clinic" in Surrey - it is still going today.

The worse hit me at 23 with AS the main area affected is spine but my lower back and hips are also a sign. I am 48 now and still quite fit and swim and run - but a bit creaky :).

I have used diet (and good supplements prescribed by a Natropath for over 20 years - I have not needed to use drugs. I have had one or two quite big flare episodes about 2 years ago where I nearly gave up the diet only regime - ironically this conincided with me starting to post on this forum about how good a diet approach was - but gradually unpicked what I was doing differently compared to when the diet was working - and have now been stable again for well over a year. Some of my pains from 20 years ago are now very rare.

If you have a flare at the moment then you can do very gentle exercises - I used to lay on my front for 20 minutes to keep me back straight - or lay on my back a with my legs up slowly twist / roll from side to side so that I didnt seize-up.

Best wishes
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Date: 21.03.2014
From: karen

Subject: Re: Connective tissue disorder anyone?

Hi Sean

Well most affected are my upper arm muscles, but I have a constant tight/cramp like feeling in my neck

I may have polymyositis so the dr thinks

My upper leg muscles have been effected as well as my shoulders and knees, my flare was bad, I didnt have the control to lower myself in and out of a chair, I was in agony!

I am walking to get my muscles working again but back to work as a dog walker on Monday after a week off to recover (Ive never had that much time off before) so that will get them going again!

Interesting to see you havent been on any meds

Karen
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Date: 24.03.2014
From: Lokita

Subject: Re: Connective tissue disorder anyone?

As far as I understand all RA, Lupus etc. are diseases of a connective tissue.
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Date: 24.03.2014
From: Linda

Subject: Re: Connective tissue disorder anyone?

Lupus, which I have is a connective tissue disease. Also have an overlap with RA, although the doctor said it was not true RA as it doesn't affect my hands and feet.

My hands and feet disagree.
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Date: 28.03.2014
From: FionaW

Subject: Re: Connective tissue disorder anyone?

Yes, I have a dx of hypermobility syndrome (HMS) as well as arthritis. I have been hypermobile all my life, but was only dx-ed with HMS last summer, ironically as my arthritis flared up badly and started to make me *less* mobile. I have found it quite confusing and sometimes overwhelming to have two different conditions - I can't always tell what's what and don't know if that matters. Also I'm anxious about how HMS may affect my hip replacement, due in May.
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Date: 12.05.2014
From: karen

Subject: Re: Connective tissue disorder anyone?

Thanks for all of your replies

I havent been on due to my laptop misbehaving but while I have been gone I have had 2 flares, both starting with a sore throat, leading to severe muscle pain & mobility problems

I am now left with tendonitis in my shoulder!

Anyway, it is confusing how lots of things over lap, I think when we present at our first appointment with the consultant, we should be tested for all

I believe now, after my experience, my first symptoms were actually mctd & not ra but I was tested for ra & got a positive result, treated with mtx, which helped it all until I was deemed 'healthy' enough to come off the mtx, then mctd reared its head so looks like back on it I go!

Sorry Im ranting, makes sense to me ha ha

Karen
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