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Original poster

ankylosing spondylitis

20 replies

wittyusername · 16/06/2008 17:37

My DH has AS (ankylosing spondylitis). I'm ashamed to say that I haven't been as understanding as I should have been - I am now doing some research on this on the web. Anyone here who has this condition or whose DH has it?

OP posts:
nannyL · 16/06/2008 18:03

a good friend of my old boss suffers with it

she is also a physiotherapist

here is her website

www.astretch.co.uk/news_others.htm

I know her very well even now and i know the key to her heatl is a very very strict diet combined with a cocktail of medication...

Original poster
wittyusername · 16/06/2008 20:26

Thanks nannyL

OP posts:
Twiglett · 16/06/2008 20:28

Hello wittyusername

you called

kickas is a good place to start .. very american

anything you wanna talk about in particular?

Twiglett · 16/06/2008 20:30

the 'very american' didn't come out right .. I meant it's american and so a lot of the posters get a lot of drugs we don't easily in the UK

but there's some interesting alternative dietary stuff

how is your dh affected? what drugs is he on?

Twiglett · 16/06/2008 20:31

sorry didn't say .. DH was diagnosed 11 years ago with AS and PsA

Original poster
wittyusername · 16/06/2008 21:34

Hi Twiglett!

Thanks for the link The diet advice is v interesting indeed, I'll get DH to check it out and chat to his GP.

DH was diagnosed about 5 years ago, he's on arthrotec. So far his AS was occasional flare ups but lately he's been suffering more than usual. Just wanted a general chat really... DH sometimes gets really down about it but despite a severe flare up he's upbeat at the moment. Things were a bit hard on our marriage but thankfully we've talked this through a lot.

What's PsA?

OP posts:
Twiglett · 17/06/2008 08:21

If he's suffering more than usual it may well be worthshile going back to rheumy and trying a new regimen

We did the starch-free diet .. it was hell and DH looked really ill (stuck with it for a year and had no results) ... I believe the apple detox on AS can take one out of flare

The thing that pisses me off the most about these auto-immune diseases is the not knowing really .. not knowing if he'll be like this forever or in a wheelchair in 5 years .. but we're on a good drug regimen now and he's stabilised for about 4 years ... big trial and error .. took at least 4 years to get the right combination and drug .. it's all trial and error .. you kinda lose your confidence in the medical profession

Our lives for the last 3 years have been remarkably better than the 4 years preceeding those .. becuase he's stabilised.

PsA is Psoriatic Arthritis so basically DH is doubly-farked ... the AS hits from spine outwards, the PsA hits from extremities inwards

It can be an emotional roller-coaster .. happy to chat anytim

Original poster
wittyusername · 03/07/2008 17:25

Hey Twiglett!

Thank you so much for listening to me drone on

Your last line hit it dead on... right now it is very much an emotional roller-coaster. He's pissed off with me as I'm preoccupied with DD who's got a fever tbh. He's going through a nasty flare up and he says I'm wishy washy in how I answer him

OP posts:
Wisteria · 03/07/2008 17:29

It's foul - I have a very similar condition so try to be understanding if he's snappy and irritable if you can - it really does grind you down....

I have improved no end since I started doing regular Pilates and Tai Chi - found it better than anything the pain clinic offered.

(PS - a little cannabis is a godsend and better for you than the chemical drugs/ painkillers IMHO)

Original poster
wittyusername · 03/07/2008 17:42

Hi Wisteria, pleased to "meet" you

I really am trying to be understanding. TBH I'm in tears as I'm worrying about DD (deep down I KNOW that I'm overreacting) and about DH - he just went out to see the doctor and was very shouty immediately before he left.

I just hate feeling so helpless, I want to fix it, I want him to feel better both emotionally and physically.

How on earth do relationships/marriages survive illnesses and the like? I really love DH but it's so hard at times like this

OP posts:
Wisteria · 03/07/2008 18:44

I think it's just as hard for you as it is for your dh to be honest - and as for marriages surviving etc - well it's hard and I'm not in a position to give any advice on that one

I would urge your dh to get on a pain management course at your local pain clinic or if not available in your area, a specialised counsellor - they help you to cope with the emotional aspects of it - it is much the same as a bereavement and you need to take yourself through the grieving process (believe it or not) before you can become accepting of it.

He needs to understand the pressure it puts on you as well - so it's not just about you being understanding.

He will have bad days but he needs to learn how to tell you this and not just be snappy and irritable, by the same token it's good for you to recognise and acknowledge his pain but not to pander to it - believe me that doesn't help in the long run!!

Wisteria · 03/07/2008 18:45

sorry that erad badly - he needs to go through the grieving process (not you)

Original poster
wittyusername · 03/07/2008 20:23

That sounds like good advice, thanks

He's back and in a better mood, I'll mention your suggestions soon.

OP posts:
Original poster
wittyusername · 04/07/2008 08:41

Twiglett/Wisteria:

Does your DH/you work? My DH feels like going to work full time is getting too much for him and is loking at his options.

OP posts:
Thankyouandgoodnight · 04/07/2008 08:45

Hi there - it is very important that your DH exercises and keeps moving. Otherwise the stiffness and pain will be a whole lot worse and progress far more quickly. He probably feels shocking in the mornings but he needs to push through the pain and go swimming / to the gym or something and he will feel better for it. Also - osteopathy can help as the treatment is to keep all the joints moving as well as they can do and to ease up sore muscles that have been overworked because the skeleton is 'too stiff'. It will really get him down BUT he has a lot of control over it and how it dictates him. If he works at it, he can make a HUGE difference to his quality of life. If he does nothing, he will deteriorate and become more immobile and depressed!

Original poster
wittyusername · 04/07/2008 15:11

Thankyouandgoodnight:

DH does go to the gym but doesn't stretch daily as he ought. I'll let him read this thread and take it from there

OP posts:
Wisteria · 05/07/2008 09:43

All I know is that 2 years ago I gave up work for the same reasons and it did me no good whatsoever - to be honest I'd lost 2 things then, my health and financial stability and can now admit that I was horribly depressed and in a rut of self pity. If he thinks it's bad being in chronic pain, try it with no money and a family to keep!

I have recently gone back to work full time but self employed so that if I have a bad day it's up to me whether I work or not but I am lucky in that my job lends itself to that. What does your dh do presently?

I would urge him to do half an hour of exercise every morning - walking is ideal, no matter how uncomfortable it may feel initially. Then a couple of pilates sessions per week to begin with. I was using sticks to walk and was in permanent chronic pain but now you wouldn't know there was anything wrong with me most of the time, I'm not cured but the pain is much less, due I think to improved muscle tone in my core, and I can walk properly again.

The hardest thing is that conditions like this can make you just want to curl up and hibernate, withdrawing from everything because you feel so alone but keeping going is the key (for me at any rate) for as long as you can.
Hope this helps x

jojo76 · 08/07/2008 21:44

Hi, just wanted to say Hi, my DP has AS too, was diagnosed about 2 years ago after having suffered with a lot of back pain and stiffness for years. I worry mainly because he doesn't seem to, I had to have a major shout at him to even get him to do the stretching excercises, and he does absolutely no excercise AT ALL. He has gone on a low fat diet which has helped, he;s not as stiff as he was, but over the past year, his spine is much more bent over. Its such a worry, he is starting to find it hard to drive as he cant turn his head to look round tight junctions and has toshift his body round instead. At the moment our quality of life isnt bad but I feel so so worried for the future, and worried that my ds's will get it too, i find myself scrutinising them for "signs" when they are in the bath ( i know how mad that sounds)....Just wanted to vent really, and to say how so very releived i was to find some other people in a similar position on here.
DP went to hospital when first diagnosed, where he had an xray, and they sent him home with a leaflet on excercises, advice on diet and suggestion that he went to hydrotherapy group (he hasnt bothered). I feel like hes just been left to it now, I feel, like you all i think, that I wish I could just "fix" this whole situation.....
sorry for rambling.....but thanks for listening xx

mumonthenet · 12/07/2008 15:39

witty,and others...

Only just seen this thread so hope you're still around.

here is the website of the British AS society, check it out. It's a really helpful organisation.

Try to join a hydrotherapy class, you can fit extra mirrors to the car - you don't have to give up driving.

I was diagnosed with AS 25 years ago when I was 20!!! Since then I've had 3 children, been skiing, sailing....etc... I have some stiffness but I'm not too bad.

I know some people suffer really badly from pain etc, but am just writing this so you know this disease is not a death sentence.

jojo76 · 04/08/2008 21:53

mum on the net, thanks for the website, will take a look. Thanks for the advice about the mirrors, that sounds completely logical, I think I got carried away there looking at worst case scenario. Your message is very positive and I for one feel less worried from reading it so thank you! xx

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