Confused about some of my issues with AS

By zaney

Last Updated:

1 min read

I'm a 76-year-old woman diagnosed with ankylosing spondylitis, uveitis, fibromyalgia, a white brain matter disease, asthma, etc. I am not sure if the brain fog is AS-related or if it is the brain matter disease waking up again.

I have a FOGGY head when rising, walking, etc. I use a rollator constantly because I've fallen so many times. I need to start MOVING--most days I stay in bed. Any suggestions on how to get myself walking, or stretching? Thanks.

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James Hollens Member

Hi <inline-mention username="zaney" user-id="2107738"/> , Sorry to hear that you have been having these struggles lately, I think all of us with chronic illnesses can relate to this. Have you met with a physiotherapist at all? I was referred to one and they helped me come up with a daily stretch routine that was easy for me to do and targeted the areas that I was having problems with. I still perform it to this day and it has helped me reduce my pain and stiffness a lot. Here is a link to an article about and a video of the routine that I use, in case it is of any use to you. But it is probably a good idea to get a professional's advice first as to what exercises are best and safest for you! https://axialspondyloarthritis.net/living/stretch-routine I also find that having a hot bath with epsom salts before I do any kind of stretching or movement helps loosen me up and makes things a lot easier too! I hope that you are able to find a way of getting more movement in that works for you and that the fogginess eases off soon! Sending love and positive vibes, James (Community Member)
Kelleeak Member

Hi <inline-mention username="zaney" user-id="2107738"/> I hope that you can get out of bed soon I understand the pain is real I hate the pain But if you out could watch something on TV or iPad to make you laugh At the moment I’m watching Modern Family on Disney channel, right back from season 1, and I laugh, I laugh out loud, ( which I just don’t do ). I’m quiet, sad and a shell of myself most of the time. But when I laugh I feel better. Then I go to stand up, and it’s bad again. But for a while I feel normal I wish I could help you more But I can’t. Wiggle your toes, Wiggle your fingers, raise your shoulders up and down, have you a frame to stand in and walk, when you stand, wiggle those hips and giggle like you were twenty. It’s no cure, I’m sorry But try and laugh It’s all we have Riddle: How did the old lady cross the road ? She didn’t, she laughed instead and caught the bus She has AS. Not funny I know. I’m no comedian Best wishes, Kellee
Anna Samson Member

Hi <inline-mention username="zaney" user-id="2107738"/> ! I was mostly bed bound due to AxSpA 2 years ago but now I can move around more. I started by slowly adding movement at home. If I am lying in bed or sitting down, I’d try to move my arms and legs to one side and then the other. I also began going on short 1-2 minute walks within the house, stopping and sitting as needed and using mobility aids. By consistently doing this and building up my stamina and endurance, I’m able to go on half an hour or longer walks now. In my experience, what helped me most was moving around a bit everyday and over time I was able to move around more and for longer.
Auldyn Matthews Member

Hi <inline-mention username="zaney" user-id="2107738"/>! It's great to see you wanting to get your body moving more. About 10 years ago, my husband was bedridden with AxSpa and it was a tough transition. Honestly, the first steps were just making small, achievable goals as well as starting physical therapy. He also always paired moving with something positive, like walking to a coffee shop or listening to music. That way he began to associate it with a positive experience. I hope those tips help!