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My little brother has ankylosing spondylitis. Can you help me and my Mum understand how to help him?

Hi everyone,

I found your wonderful forum today. It’s wonderful to read how supportive and helpful you are to each other.

My little brother has recently been diagnosed with AS. He’s 24 and has had a tough time in recent years with illness. About 5 years ago now he was in hospital for months will ulcerative colitis, and has been in and out occasionally since then. Apparently bowel issues and AS are linked, although that’s just something I’ve heard through my Mum who heard it at the hospital.

He’s fairly active and enjoys going for a walk everyday and playing football. But AS is giving him severe pain to the point where he feels like he can’t exercise some days. It gets him depressed, he’s told me as much and I can also see it in his eyes, which is the most upsetting thing.

He’s only recently been in the hospital again for more problems with his bowel that were being caused by painkillers he had been given to help with the pain from his AS (Naproxen). He’s back home again now but he’s in so much pain. It is breaking my heart to see him this way.

So I’n writing to you all in the hope that you can impart some advice or knowledge to help me, my Mum, and above all my brother navigate this condition.

What helps you? What makes things worse? Do you notice any patterns in your life that cause you flare ups? What things do you do to cope when you’re in pain? What kind of painkillers do you use? How can family members best help someone with AS?

There are probably a million more questions. But any help would be deeply appreciated.

  1. Hi - Thanks so much for posting this here - You're a very thoughtful older brother 😀 . I will share this with our FB and IG communities to help get some eyes on your post. I hope you get some helpful feedback from others soon! Sending my best, Anthony (Team Member)

    1. - Here's a link to Facebook where I shared your post this morning: https://bit.ly/3BQSHCS. I'll continue to guide others here! -Anthony (Team Member)

      1. Hi There first I want to commend you for wanting to support your little brother that is the first step to his healing journey and I’m so sorry that he has been having a tough time. When I was first diagnosed I had a very tough time myself I was very depressed but I had the love and support from my mom without her I don’t know how I would of made it this far. That’s what got me through some of my darkest moments having the love and support from family. I was diagnosed in 2018 I had never heard of this illness so after I went through my depression I decided to fight back and find ways to manage my pain and take my life back the best way I can, I seeked support groups I looked for others who were going through the same thing I was going through, that helped me a lot because I didn’t feel so alone anymore and I found people who understood first hand what I was facing and I made so many new friends that alone helps me get through tough times. Unfortunately there is no easy fix when your battling chronic pain but there are treatments that are affective it just takes some time to find the one that will help with his pain and symptoms. Dancing has help me tremendously with my mental health as well as keeping my body moving although it hurts to move moving is very beneficial when you have AS and on days where I can’t dance I turn on some music that I enjoy and just block everything out and lay under my heating pad with my tens unit on and spend time with my family they try to distract me as much as they can laughing helps alot my family def knows how to make me laugh. Ice has been very affective for me he might enjoy icing if he plays football they use the ice method for muscle recovery and it calms the burning feeling in his lower back he may be experiencing I have severe lower back pain. so ice on his pain areas will help him just don’t put the ice directly on his skin cause it can cause freezer burns I wrap my ice packs in a pillow case or towel and some even come with covers. Honestly the pain meds haven’t been much help for me they wear off after a few hours and can become highly addictive but that’s me my body has become some what immune to pain at this point. You and your mum are already doing a great job in supporting him by seeking support from others and we welcome you to the community, It’s going to be a long tough Journey for you all make sure all of you take care of each other through this process it’s so important for the family’s to also mentally prepare to be supportive of their loved one as well as take care of their own mental and physical health. Please send your brother all of our love and support anything you guys need we’re here 💙 Nadine (Community Member)

        1. I also wanted to add, I try not to over do myself when I’m feeling ok I notice that when I over do myself I go into a flare, I had to learn to slow down and go at my own pace, and taking breaks in btwn activities so I don’t wear myself out so quickly doing the smallest task can leave me feeling drained so taking breaks has helped. Take a day for self care for the whole family. Doing facials, massages, playing board games, soaking in a nice warm bath and stretching. I hope this helps 🙏🏽 Nadine (Community Member)

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