Comments for ASone Bringing young people with axial spondyloarthritis and ankylosing spondylitis together. Mon, 01 Feb 2021 12:44:58 +0000 hourly 1 https://wordpress.org/?v=5.1.16 Comment on On the front line – what it’s like to work as a paramedic with axial SpA (AS) by Na linha de frente com EA - Espondilite Brasil /on-the-front-line-what-its-like-to-work-as-a-paramedic-with-axial-spa-as/#comment-18 Mon, 01 Feb 2021 12:44:58 +0000 http://asone.nass.co.uk/%3Fp=5360#comment-18 […] Fonte: NASS […]

]]> Comment on Ankylosing spondylitis did not beat me, it made me stronger and fitter! by mcproud /as-made-me-stronger-and-fitter/#comment-16 Wed, 06 Jun 2018 18:59:00 +0000 http://asone.nass.co.uk/%3Fp=4728#comment-16 Great story, thank you for sharing! I know all about the pain in your glutes. I have personally found that running hard (80-90% speed with spurts of pushing myself to 100%) on pavement really causes pain in my SI, hips, piriformis, etc. What do you do to help you recover from this? I tend to ice my SI joints right after exercise to minimize inflammation in the area. Can I be doing more preventative work? Also, do you regularly take medications or on a need basis? Thanks for your input, your story helps inspire others to take on exercise and helps those who do exercise to keep on keep on!

]]> Comment on ASone live meetup, we need your thoughts! by Max Poplawski /asone-live-meetup-need-thoughts/#comment-15 Thu, 26 Apr 2018 19:52:00 +0000 http://asone.nass.co.uk/%3Fp=4740#comment-15 I think an informal meet up would be kind of cool, but at the same time a panel of people could also be interesting (representing the range of AS in young people)

]]> Comment on Things to keep in mind when travelling with ankylosing spondylitis. by Max Poplawski /things-keep-mind-travelling-ankylosing-spondylitis/#comment-14 Fri, 26 Jan 2018 22:56:00 +0000 http://asone.nass.co.uk/%3Fp=4700#comment-14 Ohh that is a long time to be travelling! The only products that I have seen that advertise keeping humira etc for that long at the optimal temperature are these https://friouk.com/product/frio-extra-large-wallet/ (45 hours). As with anything though, I would pop them an email and ask a bit more about it. Got to be diligent with these types of things! I’ve personally used Medactiv products, but it seems as if they have introduced a new line of fridges so I can’t speak to their effectiveness.

]]> Comment on Things to keep in mind when travelling with ankylosing spondylitis. by Sezy123 /things-keep-mind-travelling-ankylosing-spondylitis/#comment-13 Thu, 25 Jan 2018 02:31:00 +0000 http://asone.nass.co.uk/%3Fp=4700#comment-13 Which portable mini-fridge kind of pouch do you use? I’ve used several and can’t find one that stays cold for my 24-40 hours of travel time to a country (from US to Asia)? I’m looking for specific recommendations. Thanks!

]]> Comment on What the ‘fuse’? Ankylosing spondylitis won’t bring me down! by Gerry Dance /fuse-ankylosing-spondylitis/#comment-12 Mon, 15 Jan 2018 10:30:00 +0000 http://asone.nass.co.uk/%3Fp=4682#comment-12 Well done for showing your bones who’s boss, Monika! I was diagnosed in 1990 after years of pain being attributed to my running. NASS are brilliant and have helped me so much over the years. Talking of fancy dress, this is me (a few years ago!) Keep fighting! https://uploads.disquscdn.com/images/faced392dc800a09935fca73f372ea7557698a47372ec539de64e926733f0457.jpg

]]> Comment on Welcome to ASone by Christov Davies /welcome-to-asone/#comment-11 Tue, 28 Nov 2017 11:21:00 +0000 http://asone.nass.co.uk/%3Fp=4337#comment-11 Anyone hesistant to reach out and get in contact with NASS, dont be. There are here to help and dont want your credit card number, they want your smile. So if your feeling down, lonely, upset, or just interested to know whats going on here, reach out to them… you have nothing to lose yet possibly lots to gain.

Have a friend thats sad or suffers from this or similar conditions… share this page with them. Noone is alone.

Peace

]]> Comment on Russ journey to eat, sleep and breath Zumba by Russ Welch /russ-journey-eat-sleep-breath-zumba/#comment-10 Fri, 17 Nov 2017 12:58:00 +0000 http://asone.nass.co.uk/%3Fp=4644#comment-10 I love my story

]]> Comment on The Gorilla In Your House by Lynne Aldridge /the-gorilla-in-your-house/#comment-9 Tue, 22 Aug 2017 17:16:00 +0000 http://asone.nass.co.uk/%3Fp=4472#comment-9 This is where my summer (& much of spring) went. Am hoping the fall I had that put me in this predicament has caused only temporary issues, but I won’t know until I finally get a consultant appointment (4 months & waiting). But apparently fact the pain makes it difficult to stand for long, let alone walk, is not a priority. I am grateful that my partner can cook, clean, run errands & garden in my place (we have an allotment which I have only seen photos of since May), but it’s not fair on him. I have been effectively housebound since May and it’s driving me to distraction.

]]> Comment on The Gorilla In Your House by Moira McGovern /the-gorilla-in-your-house/#comment-8 Tue, 01 Aug 2017 02:28:00 +0000 http://asone.nass.co.uk/%3Fp=4472#comment-8 The first three words resonated with me. Acquiring a disability. I do not want it. It has changed my life and me. But this post is amazing. Funny and intelligent. So true. Thank you.

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