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Not Just Back Pain

What symptoms do you experience other than back pain? How do you manage them?

    1. I have had ankylosing spondylitis for about 15 years it started with gout first then now with 3 months it went full flare up right now my hips are fused toghter and neck fused toghter it is trying to get the shoulders I have about 90% all over body I try to walk with walker when I have to sleep I start walking just afternoon when I fell not so sleepy and taking meds

      1. Wow, I cannot imagine how that must feel having so much fusion. I hope your medications are helping provide you some relief from AS symptoms. A big hug from me to you!

    2. I have fused hips and neck is fused my shoulders. Pain going down my legs I try to go for a walk on my walker as if I walk house to backyard withoutwaker need to sit for a bit muscle pain on both sides of spine

      1. Nope it's not just the back.
        My SI joint /lower back pain has now extended into my hip .
        Sharp /dull /muscle spasms & some days my limited mobility is REALLY limited . .my spine makes strange noises (feel like the tin man & I need to be oiled)
        Nothing really helps I end up not even caring to take any pain pills or muscle relaxers cuz it don't work!
        37 yrs & waiting for a pill to help.
        Some days. It Doesn't even take the edge off & hasn't in well over 20 yrs. I would say I only really sleep 2 nights a week when I'm so exhausted I just drop. .
        Ya can't get comfort.
        Ya don't sleep. Simply just waiting for something to kill the pain

        1. I am so sorry it was such a fight to get your diagnosis—that shouldn't happen to anyone. Like you said, the longer you wait for a diagnosis the more damage is done, and ultimately the harder it is to get the disease under control. But I'm so glad your insurance approved a new biologic. I know all about the fights with insurance and how awful they can be. I know that Taltz blocks IL-17A, similar to Cosentyx, but all biologics have a slightly different structure so you can have more or less success with one or another, even when they're in the same class. I am hoping this one works for you—it sounds like you are really due for some good luck with these medications.
          Humira was great for me too initially and then it fizzled out, as you described! It was such a shame because it helped a lot. Cimzia is now working to some degree but I am considering trying something new now, perhaps Simponi or Remicade.
          Please update us on how you are doing on Taltz as it starts to work, if you are comfortable. Wishing you luck with this one!
          -Diana, Team Member

        2. thank you so much !
          So far I haven't noticed anything with the Taltz not like I did with even the 1st dose of the Humaria but I'm hopeful. I'll try anything they throw at me sooner or later they will get me with thr right meds (I hope) .
          Hope you feel better & your new meds help !

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