AS "Insta" Stories
Hi there! My name is Anthony and I'm a team member here on AnkylosingSpondylitis.net. I have the honor of interacting with you on our site and social media accounts - Perhaps we've chatted before! One thing I've learned is that we have an incredible group of people in this community. You are all so supportive of each other no matter what stage of this "journey" you are in, no matter if you are having a good or bad day, and no matter if your experience is different from the next persons.
I want to share a few things back with you that you have shared with me. I think it is important for people to know they are not alone in this experience of living with AS, and seeing what others have gone through can help.
Sending positive vibes to you all,
Living with ankylosing spondylitis
For those who are not on Instagram, these are posts we made using the Instagram Stories feature which allows people to interact with us on a different platform!
In three words or less, how would you describe AS?
- Unpredictable, frustrating, misunderstood
- Isolating, exhausting, motivating
- Living, yet dying
- Random and painful
- Pain in the ASs
- Annoying, confusing, depressing
- Opportunity for growth
How did your AS initially present itself?
- Hip and chest pain
- SI joint pain
- SI joint pain that gradually worsened over 6 months until I couldn't walk
- Uveitis and neck pain
- Muscle spasms and strains...constantly
- Stiff and painful back, neck and hips
- Fatigue and ankle pain
- Lumbar pain, hip pain, planter fascilitis, and chest pain, in that order
- Woke up one day and couldn't walk
- Tension headaches and back aches
- Lower back pain
Finish the sentence: Today I am caring for myself by...
- Saying no!
- Binging on Netflix and ice packs
- Taking plenty of breaks
- Stretching a lot!
- Resting. Actually resting
- Resheduling an appointment so I can manage fatigue
- Giving my body the rest it deserves
Have you had to change careers due to your AS?
- Yes - 67%
- No - 33%
Has anyone ever minimized your AS because they could not see it?
- Yes - 97%
- No - 3%
Do you struggle with fatigue?
- Yes - 95%
- No - 5%
Have you experienced brain fog?
- Yes - 97%
- No - 3%
Has AS changed your sex life?
- Yes - 89%
- No - 11%
- Yes - 92%
- No - 8%
- Yes - 98%
- No - 2%
Do you ever feel guilty for being sick?
Does it help to read stories from others living with AS
Will you share a story about your experience with ankylosing spondylitis? Click the button below and help others feel less alone!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?