Tired of suffering with my ankylosing spondylitis

Hi there @spond568‍, I'm so sorry to hear you're going through that... Let me tag some other members here who can possibly share with you.

Hi everyone, how are you doing? What do you do to get through an AS flare? Do you take any particular medications? Do you have a "flare-up routine"? What helps you get through the pain?
@Cdionne1089‍ @Avro560‍ @Kerryross‍ @Kanna3‍ @w2007sara‍ @JayLynn‍ @Tinamaria‍ @jrobinjrob‍ @Andreeag‍ @stain2319‍ @Gbeltz‍ @zmgwedli‍ @brownie17‍ @EmilyJP‍ @Kmartin143‍ @pnj0113‍ @SouthernBelle‍ @Jdbme65‍ 

Share your tips with us here!

Take care,
Courtney

I also struggle during flare-ups. The pain is almost unbearable. I don't take opiates, yet. I'm currently using medical cannabis, but the pain is still so terrible at times. I feel like I'm under so much pressure when I'm having a flare because I'm usually the caretaker. Just remember to not be so hard on yourself. You cannot control when it happens, and rest yourself as much as possible. If you find a good lidocaine patch that stays on will definitely be helpful. Epsom salt baths help me when I'm in extreme pain. Heat and cold can trick your nerves to not feel the pain. I hope this helps you.

Stay well,

Crystal D.

Thank you for all this advice @Cdionne1089‍ , I have already tried lidocaine, I will test the rest of what you have stated

HiI I am at the severe stage of this disease since I wasn't officially diagnosed until my back and neck was aleady frozen and had back pain for all my life. I am on Humira but it doesn't help. I can't qualify for Enbril which is $1900.00 a month due to I'm not in the domut hole with Medicare. I can't get in and out of a tub, or a zero gravity chair, or do the cold and hot routine because I am diabetic as well. I have found the a bed wedge has helped with my nightly hip pain and recently just put socks on to keep my feet from getting cold at night when sleeping. Any bed covering puts too much weight on my toes esp. one of my big toes. I take Gabapintin(sp?) for my peripheril (sp?) pain. I did read recently read that AS patients should be taking Vitamin C for their immunity. So I am starting that tonight. However I don't remember how many mgs to take. I use (have to) a rollator (walker with 4 wheels) and a lift chair which helps with my mobility and I couldn't get out of a chair. So I could use any other suggestions and also find out about the Vit C.  Thanks friends.

@CDKennedy Hi, there. I'm suffering without a "proper" diagnosis and treatment of high doses of IV steroids over the past 4 years. I'm still really messed up but can manage life on some days. I'm looking into zero gravity beds. The neuro that gave me my initial treatment also prescribed vitamin D and B12. They help with function as well as having any deficiency thought to be associated with neurological disorders. I've been in and out of a wheelchair for years. Gabapentin and Lyrica don't do much for me. I'm on state Medicaid... I understand.

Thank you CDionnel1089. I will look into B12. I am already taking D(3) suggested for immunity issues esp. with Covid floating around. To clarify. it is the AS that is keeping me out of the tub and zero gravity chair, not the diabetes. I can't use the heating or ice pad due to that diagnosis. But I am in the severe range so I wish only the best with you looking into the zero gravity chair. I have read that they can be great.

I too battle with flare-ups. It's almost unbearable. Yet, I have not used opiates. The pain can be very intense at times, even though I use medicinal cannabis. Since I am the primary caregiver, I find myself under tremendous stress when I experience a flare. Remember not to punish yourself too much. Relax as much as you can. You cannot control the timing of it. It would be great if you could find a good lidocaine stick that stays on. [This content has been moderated by an administrator]

I'm sorry to hear that you're going through such intense pain with your ankylosing spondylitis. It can be really tough to manage. Have you considered using a [This content has been moderated by an administrator] to track your pain levels and medication schedule?

Hi everyone 👋

@CDKennedy @rwilsonjr67 @JTom4cats @dennislauren24 @StevenLambert @missfixit79 @melaniez @bhoney4829 @Wiederich @pnj0113 @DawnGarland @Bearmom @Jakette @Tmohrdonohue @Ivysky24 @Msmothers72 @Mariben @Deandrea @ljshell @Cbluec @ThomasFerrell

Ankylosing spondylitis can be incredibly exhausting — both physically and mentally. Flare-ups, stiffness, fatigue… it’s a lot to carry day after day, and you’re not alone in feeling overwhelmed.

➡️ What part of living with AS is the hardest for you right now?
➡️ Have you found anything (treatments, routines, support) that helps you cope on tough days?

Your experiences might really speak to others here, so don’t hesitate to share 💬

Take care,
Somya.P, from the Carenity team