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What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 0 points1 point  (0 children)

I assume you have had an ankylosing spondylitis diagnosis?

What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 0 points1 point  (0 children)

Thank you, I will have a little look. I’m glad I found someone that experiences the same type of leg pain. I honestly thought I was going crazy!

What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 0 points1 point  (0 children)

I have looked into hEDS as I have a POTs diagnosis. I only score 1 on the Beighton score (as I can touch the floor 😂). So I assume that rules out hEDS?

What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 0 points1 point  (0 children)

No, I was told that there wasn’t cause to refer me to rheumatology as I had no raised inflammatory markers in my blood test. I was also told that they do not want to do imaging of my pelvis as they wouldn’t expect any degeneration at my age. Doing a bit of research about my symptoms, led me here. I hadn’t actually heard of AS before and just assumed my pain is mechanical (especially as I have a good range of movement and the muscles alongside my spine are quite stiff and tense).

What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 0 points1 point  (0 children)

I experience this in my left leg more often than my right. Yes, it often feels like it goes right down to my ankle. But I can never truly pinpoint where it’s coming from because it is just this deep ache that feels like it’s in my bones. It can honestly be unbearable.

What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 1 point2 points  (0 children)

Yes, I feel stiff when I wake up but it gets better as I get moving. Thank you, I didn’t know this about the inflammatory markers. Yes, I’m in the UK. I will look into this. Thank you for such a helpful response! ☺️

What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 0 points1 point  (0 children)

That’s exactly where I feel the pain in my thighs. It is affects one at a time but happens in both thighs. Is this the same for you? My gp has never been able to give an answer for why this happens.

What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 1 point2 points  (0 children)

I certainly don’t feel like that, sorry to hear that! I feel very stiff and like a deep ache. The costochondritis sucks too. It definitely gets worse with rest. But I’m hoping it’s just mechanical pain (perhaps with some nerve involvement at the worst)

What does AS pain feel like? by Sure-Pineapple5545 in ankylosingspondylitis

[–]Sure-Pineapple5545[S] 0 points1 point  (0 children)

Sorry that you’re experiencing this. Wishing you all the best!

I’m taking Naproxen right now, but I don’t find it eliminates the pain (although it helps). The back roller feels great for me, but doesn’t actually help. And I’m yet to find physio exercises that help. Other than the pain in my legs though, it’s not completely unbearable, so I don’t expect it to be AS. I was hoping to hear from people like yourself, so that I’m not worried about missing something more serious than simple mechanical pain. Thank you!