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How do others cope with pain?

Been recently diagnosed with AS. I used to be a full time support worker for the elderly until my symptoms flared and left me in bed the past 7 months. My diagnosis lead to me being put on amgevita. I'm into my 3rd month and I feel its exacerbated my pain. I recently got a cortisone injections 4 days ago into my hip. I never knew I could feel worse but its possible! How do others cope? Iv found myself in tears all day every day. Not being able to go to walk let alone do the housework. Not being able to be a mum to my boys. 1 of my sons has went to live with his dad for help. Me and my 7yr old spend most days in bed. He knows mummy isn't very well, I struggle to make it to school some days. I'm wondering how to help with the pain if anything? Every pain relief I have had is ineffective. Is there any tips or techniques. I'm still extremely new to all of this. Finding it extremely difficult to cope with most days..

  1. I keep a heating pad by my bed and use it to ease my back pain to fall asleep and then again before I get up in the morning. On particularly bad mornings, I also follow that with a warm shower and about 20 minutes of stretching if my back can handle it. My PT also put together a list of progressive stretches for me to do 4-5 times a week or as-needed. Right now I take Naproxen ec/esomep and acetaminophen but have found it to be insufficient in the last few months so we're repeating my MRI and blood tests to check for any changes or comorbidities.

    For me it's been a very painful journey of trial-and-error. Most exercises, including mild stretching, can really aggravate my SI joints and lower/upper back. So I've learned to take things very, very slowly with little expectation on when or if it will be helpful.

    1. @S6Thomas I love my heating pad would not be able to be without it. I also keep it right beside my bed for those sleepless nights.

      You said it well. It's a painful journey and all about trial and error to find what helps for each one. I know everyone is different and sometimes what works for one doesn't work for the other. You are doing the best by doing things slowly. This is what helps me also. How was your weekend? How have you been feeling?

      Nicky (Team Member)

  2. I take Humira and regular Tylenol which don’t do much of anything for pain. I have been thinking about trying to get my physician to prescribe a pain medicine. I have heard that Tramadol might be a good place to start, but what do I know.

    1. Hi @JRobb

      I am sorry both Humira and Tylenol haven't been helping. Have you discussed maybe like you mentioned trying something different? I know sometimes it can take some tries to find the right medication to help.

      How are you feeling today? How was your day?

      Sending you hugs,

      Nicky (Team Member)

    2. good luck getting opiods. They do work but docs are reluctant to prescribe here.

  3. I am 23 years old, i work as a full time employee. I have been diagnosed recently 9 months ago, i have AS and Crohn’s disease, i have struggled alot, but now with exercising and swimming, taking biological treatment (remicade) and resting i have felt much better, even though i get flares time to time but i can manage the pain with some pain killers and meditation. I live in iraq the doctors here are not so familiar with this diseases but still i search alot for tips to how feel better. I hope you get better.

    1. I was recently diagnosed with AS after 3 years of constant pain. It has progressively got worse. I’m 25 years old and I struggle every morning to get out of bed. Usually on crutches for the first part of the morning till it eases enough. The pain and stiffness is in my whole back, from the very top to the bottom. it’s just unbearable at the moment. Constant fatigue and feeling just so low. I can’t do any activities normally normally anymore. Waiting for the next pain management but in the interim, I just cannot find anything that works. I have been on NSAIDs, steroids and recently had a steroid injection. None of which have really helped enough. Waiting to start biologics.

      1. Hi @Ebsssd

        I know how hard it is right now. Especially when you feel like you have tried everything and nothing helping with your pain. I find biologics have helped me the most. I know everyone is different and not everything can work for everyone the same way. But biologics for most have helped. Sending you positive vibes on your next step journey and hope the biologics can help find you some relief.

        Nicky (Team Member)

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