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Date: 11.05.2012
From: russ

Subject: advice

hi all...im russ, im 31, for 6 years now i have been suffering with severe hip and chest pains..this has lead to all sorts of problems, work, money, familly life and has lead to a severe depression problem...i have finally been diagnosed with ankylosing sponylitis..im told i will be on anti TNF drugs but its taking forever to get started, it doesnt matter what i do im in pain...anyone else out there suffer with the same thing?...any advice?..life seems pointless now, i cant take anymore of this pain
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Date: 11.05.2012
From: JayneN

Subject: Re: advice

Hi Russ,
I'm so sorry that it took so long for them to realise that you had ankylosing spondylitis. What pain medication are you on? Anti-TNF drugs don't actually stop the immediate pain. They work by targeting the proteins that cause inflammation. No inflammation equals no pain.
Don't give up on yourself Russ, things will get better.
I have psoriatic arthritis and fibromyalgia. I'm housebound and have been suffering for about the same length of time as you. I was close to a nervous breakdown and felt very isolated. I decided to keep my brain ticking, after all if you don't use it you lose it so I enrolled on online courses. I do not see any more people but I do feel that I've got something out of my illness if that makes any sense. I wrote a wiki. It's called arthritis support wiki. In that there is a full page of information about ankylosing spondylitis and a whole bunch of other stuff. I can't give you a link here but its a wikispaces wiki.
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Date: 11.05.2012
From: rhona

Subject: Re: advice

Hi Russ,
It is very hard coping with such a painful condition and it is especially hard when you are so young. Now that you have a diagnosis things should improve as they now know what they are treating. It can take a bit of time for the drugs to work and then you should feel a lot better. Speak to your doctor about the depression as it can go hand in hand with a long term illness and also speak to them about your pain, see what they can give you until the other drugs kick in. Remember Russ there is new drugs coming out all the time that will help you lots so your life is not pointless, just get all the help you can from the professionals until you get better. Have you applied for DLA. Take care and keep in touch x
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Date: 11.05.2012
From: russ

Subject: Re: advice

thanks for your replies its comforting to hear other peoples stories and how people have found hope, i have looked at your wiki page jayne and found some useful infomation, i was diagnosed over the phone after chasing up why it was taking so long so the condition wasnt really explained to me in much detail, but thanks to the help from people like yourself i am learning more every day. i am still able to get around but very slowly most days and hearing from people with a condition that makes them housebound makes me realise how lucky i am, theres always someone in a worse position. im on co-codamol only at the moment but have tried various anti-inflam drugs most of which gave me no relief but awful side affects. i really hope the anti-tnf drugs work, it feels like my only option at present
i have been on medication for depresion but i still feel very angry, and uninterested in much, i do feel that if my pain wasnt there i would be able to do more so this would improve
the one thing i was told would help me a lot was swimming, ive been 3 times this week and feel worse for it
ive applied for DLA and have had a letter saying they need to speak with my specialist so it will take a bit longer for a decision, im trying to reduce my hours at work to take the pressure off a little and am more optimistic than i was 2-3 weeks ago....i just hate feeling like this, hopefully soon i wont, thanks to you both x
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Date: 11.05.2012
From: Patricia

Subject: Re: advice

Hi Russ :-)

Sorry life is not so good for you at the moment. Being in constant pain is very difficult and it is understandable that you feel angry and fed up. I know it sounds a bit of a cliche but I try not to think too far ahead - concentrate on the day I am in - and keep hoping that sometime soon the Doc will get the right drugs that will help me. I was wondering if you had heard of the site kickas.org?? It is a site especially for AS - for people like you. Lots of good information. You may well find it helpful.

I hope in the coming weeks your new medication will help you and you start feeling stronger both physically and emotionally.

Take care

Patricia x
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Date: 11.05.2012
From: Sean

Subject: Re: advice

Hi Russ
Chin up - you can beat this - one way or another.
I have had AS since my teens and am now 46 - (i have posted my story in the story section) I have been through lots of ups and downs. My AS is exacerbated by food allergy that also triggers an autoimmune arthritic reaction in some people.
You might already have seen this stuff - and I am not going to say that a big diet change will work for everyone but have you seen the KickAS.org website there are lots of people all over the world sharing tips on helping AS there and you will get to know the in and outs of the causes (Klebsiella bacteria in the digestive tract that feed on starches).
A few tips on stretching - I find hanging (by my hands :-) from a tree or the landing stairs stretches my back muscles. It might not seem like it now but it can be better for you. Best wishes - Sean
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Date: 11.05.2012
From: Sean

Subject: Re: advice

Hi Russ -
I forgot to add this - a really uplifting story from another guy with AS

http://www.e-bility.com/articles/as.php
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Date: 12.05.2012
From: russ

Subject: Re: advice

thank you, its refreshing to know people understand how i feel, ive checked out the kickas site which was very helpful, full of info, ive bookmarked it!!....ive persisted with various exercies and i just feel worse afterwards but the diet thing is very interesting think it may help...i dont have a structured diet, i have 2 sons and moneys tight so we tend to make sure they eat properly and we make do with whats in the cupboards. something i clearly need to change, thanks guys
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Date: 12.05.2012
From: marlene

Subject: Re: advice

Hi Russ, life is difficult enough at times without having any kind of arthritis it is a painful condition. The pain gets you down more than you realise and this makes everything feel like a mountain to climb. I have OA and this started in my thirties and I had an elbow operation that I must say has been excellent. I wasn't told at the time that this was going to be a long journey.
I am now 61yrs not bothered to tell you that I know some Ladies wouldn't share HAHA.
When I was 57yrs I had back surgery which hasn't I am sorry to say been to successful.
I thought how awful life was going to be but do you know what!!! It isn't and I have so much to keep me going
I understand the depression bit but, this is all normal you want to be your old self.
Try to be a new you. Set yourself a challenge each day, just small ones and then say well I did that and things will progress.
I would never of even used a computer scared of the things. I did a free course run by my local council and hey ho here I am chatting to all and every one here. The people on here I do class as friends even thou I have never met them. They are supportive and always have a kind word and advice they give is great.
I also have learned so much about all the different types of Arthritis.
Your chest pain have you been checked for muscular skeletal disorder (spelling?) I was admitted with chest pain and the outcome was this. Google and see if this discribes yourself and ask your GP for advice.
Are your pain meds good enough for you?? Don't be in pain tell your gp you need better pain meds.
I also suffer with bad hip pain caused by bad posture due to back pain. Please be careful what excercise you do as the wrong ones can cause you more problems. Have you been for Hydrotherapy. I founds this very helpful for my back.
Sorry to go on I think I have written half a book.
Take Care Russ I hope you get the help you need sooner rather than later.
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Date: 13.05.2012
From: Linda

Subject: Re: advice

I would echo what Patricia said and visit the kickas website. It's an excellent site for people with AS. I know that special diets can sometimes be costly, i have Lupus/Ra and follow a gluten free diet. It has kept my weight down and my IBS has cleared up so i think it is worth it. It doesn't really cost much as i make everything myself.
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Date: 31.05.2012
From: JayneN

Subject: Re: advice

Hi Russ,

How are you at the moment? I was skipping through the board and saw your thread so I just thought I'd say hi.
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