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Tiredness, itchy eyes, sore knees & ankles

Hi

I was diagnosed with Crohns 3 years ago and am humira injections once a week. In February I was feeling v tired, had sore ankles and knees and v itchy eyes so my consultant put me on pred and budesonide along with the humira. Had a colonoscopy in March and no active inflammation. Due to Covid-19 consultant took me off pred but I stayed on budesonide TIL mid June. Now I am back to the same symptoms as February

Called my IBD clinic and I did a fecal calprotectin test and nothing showed up. Went for bloods today and I was so tired after driving to the clinic I went back to bed for 3 hours (it’s a 30 minute drive away!)

I’m at my wits end with this now and don’t know what to do. I’ve take a week off work to try to catch up with my energy levels but I’m actually more tired now!

Anyone have these symptoms while not flaring according to the fecal calprotection test.

Anyone any idea how to get my energy back.

TIA

  1. Hi @niamhc -

    I'm so sorry that you're experiencing symptoms without test results showing helpful information. I'm actually in the same situation as you are right now. Some things I would recommend for your energy is to make sure that when you are able to eat, youre consuming both carbs and protein, for short and long term sustainability. Struggling with malnutrition can be a huge energy zap. Also - hydration! Even if you're drinking a lot of water, having frequent bowel movements or diarrhea can dehydrate you. Some people find that oral rehydration solutions like Pedialyte or DripDrop help them get back a little energy. It might also be worth reaching back out to your doctor, explaining that you're still struggling with symptoms and ask if there is any other suggestions they may have.

    We're thinking of you!

    Warmly,
    Amanda (IBD Team Member)

    1. Thanks guys - all my bloods were normal but still waiting on my humira level results. My IBD team think I’m either starting a flare or I’m getting arthritis.... hopefully we will get to the bottom of it soon

    2. @niamhc, keep us posted! We're thinking of you!
      Warmly,
      Amanda (Team Member)

  2. @niamhc,

    I second everything that Amanda has said. When I get horrible fatigue it is usually because I am very anemic and deficient in vitamins. Did you doctor check your RBC, Iron levels and hemoglobin? Also ask to check vitamins and minerals.

    I hope this helps some.

    Big hugs,
    Elizabeth (team member)

    1. Hey @niamhc,

      Some super helpful answers have already been given, which I can only echo!

      For me, calprotection and CRP have never been a good indicators of my disease activity. Stick in a scope and take some biopsies, and suddenly it's clear!

      As for the soreness and pain in your joints, I have had the same issue for years. I have to go on and on to get a referral to rheumatolgy, which I now finally have. I am still waiting for the actual initial appointments due to COVID-19, but I am hoping I will get to see someone soon so that I can finally get some answers, and hopefully, some relief!

      - Sahara (team member)

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