A Day In The Life Of Someone (Me) With Ankylosing Spondylitis + medication

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  • Опубліковано 2 сер 2024
  • what does a typical day look like for someone who has ankylosing spondylitis?
    let me tell you!

КОМЕНТАРІ • 17

  • @realbeauty938
    @realbeauty938 3 роки тому +4

    Every night, 3am wake up time due to pain 🤛every....night....👀

  • @pacopetepnw3434
    @pacopetepnw3434 3 роки тому +3

    @11:00 ish plus.When the curtain of fatigue hits me, game over for a lot of the day, same as you. It is not like a tough active day a person goes through (no choice in the matter). I have PsA ..all the usual things..pain, stiffness bla bla bla... hate the sound of my voice talking about it. Thank you for sharing so we do not feel alone.

    • @AnkylosingSpondylitisMan
      @AnkylosingSpondylitisMan  3 роки тому +3

      Hi, no problem at all. There are a bunch of us that go through similar symptoms, so I feel it's good to know we're all in it together.
      I know what you mean about fatigue, it can vary so much from day to day.

  • @junaidrashid86
    @junaidrashid86 3 роки тому +3

    Lot of meds, i prefer to go without them.
    Only take during flare ups.

  • @killuminatikilla3235
    @killuminatikilla3235 2 роки тому +1

    Hi. Have been diagnosed with hla b27.
    I suffer from loads of crazy symptoms and I am 27 years old and I have been working for years and even lost my apprenticeship when I was younger due to fatigue. I always thought it was because I smoked weed that the reason I was always sick.
    Never listen to doctors because I've been suffering for years and after about, 7 years of pushing them. They are finally looking into whats wrong with me.
    I still think they don't know much themselves.
    Hey a tip for you. I drink rosemary and clove tea for anti inflammation and I swear to you. After 2 days I can feel the inflammation die down.
    Hope you are well and everything goes good for you pal.

    • @AnkylosingSpondylitisMan
      @AnkylosingSpondylitisMan  2 роки тому

      Thanks for the tip, it's always good to hear other ways to help reduce inflammation.
      Sorry to hear about you having HLA-B27, hopefully the fatigue will get better for you

  • @IamMedicine
    @IamMedicine 3 роки тому +4

    I have AS and don't take any meds for it. Don't want to pump my body with meds.

    • @AnkylosingSpondylitisMan
      @AnkylosingSpondylitisMan  3 роки тому +2

      What do you do for the pain and stiffness?

    • @tenminutetokyo2643
      @tenminutetokyo2643 3 роки тому +2

      It can ruin your spine over a few decades.

    • @chrismelvin8200
      @chrismelvin8200 3 роки тому +2

      Very similar cocktail for me. Only addition I have - humira. A biologic injection every two weeks.

  • @Welcome2TexasPodcast
    @Welcome2TexasPodcast 2 роки тому +1

    I have been in pain for over 20 years had back surgery things felt worse than before. Finally wife made me an appointment with rumetholist and was positive HLA-B27 ran some more test . Finally diagnosed with ankylosing spondylitis. Started humira 6 months ago it helped. But dr said I left untreated for so long that medication might not work. I have infusion appt next monday. I have been off humira for 3 weeks. My shoulders hurt so much I can not lift my arms. What do you do for shoulder pain. The opiods are not working I take 10mg hydrocodine. But I still cry. This condition will make a grown men cry. I am angry most of the time. I want to be the men I was before. I fell if go like this my life will end shortly then it should.

  • @tenminutetokyo2643
    @tenminutetokyo2643 3 роки тому +1

    It has been linked to diabetes also. Get lean.

    • @AnkylosingSpondylitisMan
      @AnkylosingSpondylitisMan  3 роки тому +2

      I'm working on the weight, I've lost a stone over the past two months, and pushing for another stone. Fingers crossed this will help symptoms.

    • @mmckay3
      @mmckay3 3 роки тому +2

      How is AS linked with diabetes? I have AS and I don't have diabetes. I do have the HLA-B27 gene though and also other immune disorders. Leukocytoclastic vasculitis and fibromyalgia.

    • @tenminutetokyo2643
      @tenminutetokyo2643 3 роки тому +2

      @@AnkylosingSpondylitisMan it will. Eventually. Just keep going. After you pass a certain threshold, the process will stop in your body. You will know when it happens because you will feel it. Especially your mind will be much clearer. But you will know.

    • @tenminutetokyo2643
      @tenminutetokyo2643 3 роки тому +1

      @@mmckay3 you may be borderline prediabetic. Or just have high basal insulin rate. Get an oral glucose tolerance test. Several medical research docs have stated its linked to diabetes. Or metabolic syndrome. You can have too much internal fat. Get a PET scan also. NAFLD.