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Is there a remission period?
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fadgie
fadgie
Last activity on 07/05/2016 at 11:25
Joined in 2016
15 comments posted | 7 in the Living with ankylosing spondylitis group
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Hi ankyloo,
That is sometimes a tough call, i have had periods where things regards my condition did slow down at one period of time for a little while and I felt great. It was a joy to be free from pain was so good. It was however kind of short lived and as they say I paid the piper for that period. I have since never had a period quite like that one I get an odd day or a few hours but you often wonder is it the meds working or what . Over the years I have I suppose learned to basically live with it and manage it the best anybody can, the good days are good and the bad days well you will know yourself how that one goes.
I have been at acute chronic pain management course through the hospital and some are good and some not worth going. The only thing is that you can take away from them is that there are others out there that are just like yourself and it is often a good thing to know. You meet some amazing people I know I have and I was glad to have helped one guy the last time to get the feelings of being alone put to rest so to speak. When we started the course he was like us all a bit apprehensive at the thought of it by the end of the 3 week he had gained in confidence from those who gave him support. So much so he went on holiday with his wife and family for a week something he thought he would never be able to do again. That day he came back when he walked through the door what a change we all saw in him full of confidence again a broad smile he stood up and thanked those that had helped him through those darker days when he had just been sort of diagnosed with the condition. I still hear from him and he seems to have grown more and more confidant with life and is now a part time counselor for pain management.
I suppose what I am getting at is that you can make your own good days by trying whatever help is out there and seeing what works for you. That may be simple things from your diet to meds to meditation to pacing things you do during the day and above all never giving up on yourself. I hope that perhaps you can get some food for thought from this, I know it may not be what you are kind of hoping to hear or want but unless you try things you will never know what quality of life you can achieve. I was very much not into trying but the road in life is never a simple one anyway good luck with whatever you do and remember that you are not alone and there are people out there that do understand when others just look at you and think your just at it....
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Alexander McFadyean
Jill Hamilton
Jill Hamilton
Last activity on 11/04/2019 at 09:15
Joined in 2015
2 comments posted | 2 in the Living with ankylosing spondylitis group
Hi Ankyloo
Take a look at this information on the NASS website: http://nass.co.uk/about-as/just-diagnosed/flare-ups-and-burn-out/
Jill
fadgie
fadgie
Last activity on 07/05/2016 at 11:25
Joined in 2016
15 comments posted | 7 in the Living with ankylosing spondylitis group
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Hi Jill.
Just to say I took a look at the website and I was happy to do so ,I found a few tips in the booklet and was happy to have a look through the rest of the site and was pleased with and have book marked it . Also thanks for sharing this info .... Alex
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Alexander McFadyean
Jill Hamilton
Jill Hamilton
Last activity on 11/04/2019 at 09:15
Joined in 2015
2 comments posted | 2 in the Living with ankylosing spondylitis group
Glad I could help, do get in touch with NASS if you need any more information Alex.
Jill
fadgie
fadgie
Last activity on 07/05/2016 at 11:25
Joined in 2016
15 comments posted | 7 in the Living with ankylosing spondylitis group
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I will get in touch with them again should the need arise. I was impressed with the site there is no doubt that I will be back and might even join as I see they have a membership. Alex
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Alexander McFadyean
cooperman
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cooperman
Last activity on 20/08/2024 at 18:31
Joined in 2015
23 comments posted | 7 in the Living with ankylosing spondylitis group
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Hi Ankyloo read your comments with interest as I have suffered with AS for many years. I started with pain when I was in my thirties and was not diagnosed until I was 55 by which time lots of damage had already occurred. I have a rigid spine and very little chest expansion. Numerous GP's 0ver the years gave me many pain killers but none worked and it wasn't until I went private that I saw a Rheumatologist and eventually was diagnosed. He prescribed NSAIDS( non steroidal anti inflammatory drugs) and they worked like magic. Suddenly I was pain free after all those years. About the same time I started to use a gymnasium 2 to 3 times a week and having warmed up with a CV workout I go on to do 30 minutes or so with weights. My theory is that if you have a strong frame the joints are well supported and this helps tremendously. I am now 72 years of age and about 5 years ago the Doctor suggested that I should try and do without the NSAIDS as long term use is known to affect the stomach. I was delighted to learn that I remained pain free for a number of months but do have the occasional flare up when I need to go back on the tablets. I moved house some years ago and this resulted in me losing contact with the original team who supported me and I have moved to an area where the care is very poor by comparison, so I feel quite isolated when it comes to AS. Once you have sorted out meds which work for you self help is the way to go. Get plenty of exercise and work through the pain if you have to. It will be worth it in the end.
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Ankyloo
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Ankyloo
Last activity on 17/03/2022 at 10:26
Joined in 2015
30 comments posted | 22 in the Living with ankylosing spondylitis group
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Hello,
It's been 2 months that I have a quite severe pain and I ask myself the following question. Is it going to calm one day? Am I going to go to bed sick one day and wake up in shape the other? Is it achievable in real life? Even if you say that the remission lasts only a few days I'm all ears. Does someone among you has experienced periods of calm? Because here at the moment, I admit that it hurts. Unless the meds do not make effect ...