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Miserable body pain?

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Ulcerative Colitis
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Posted 7/15/2018 9:37 PM (GMT -5)
Hi guys, I am starting to stabilize out symptom wise from flaring back up when my Entyvio levels dropped. I am still at 15 mg of Prednisone. Was waiting for the bleeding to settle down before tapering, and I think I am about there.

I am having a really big issue with exertion beyond my daily activities causing me to physically hurt. It goes beyond sore muscles to a really icky feeling in soft tissue. Yesterday I very slowly walked to a waterfall that was .8 of a mile. Today I have one spot that feels sore on my leg, but the rest is just pain. It makes me feel a little desperate to get out of my body, and afraid to do things that are physically exerting. In the past when on steroids I have had difficulties with being exhausted for several days after over doing, but I didn't have the pain. Would this just be the steroids too?
Posted 7/16/2018 7:31 AM (GMT -5)
I know that we heal much slower while on pred from light to moderate exercise. For example, while on pred I'd go to the gym and do a rather light workout with 1/2 cardio and 1/2 light weights. Afterwards and into the next morning I felt like I really kicked my butt on a very extreme workout that I pushed my limits at (and anything but).
Posted 7/16/2018 12:04 PM (GMT -5)
I am happy your symptoms are improving. Hopefully when you're off prednisone your body with strengthen again. I always had weird aches on prednisone, it will be a dream to get off of the evil pills.
Posted 7/16/2018 10:20 PM (GMT -5)
I feel like I recovered a little faster this time than I did a couple of weeks ago. I was so relieved today as I messaged my doctors office and they said my closer infusion schedule had been approved. Tomorrow is 4 weeks, but they can't get me in until next Wednesday. Never knew they were so tight in the infusion center. I thought it was probably the Prednisone, but it is easy to forget how many miseries come with it especially in the midst of suffering from it. Urgency is finally getting better this week, bleeding is decreasing. Going less often. Whew. I am hopeful again.
Posted 7/17/2018 7:28 AM (GMT -5)
That's good on improving symptoms, it sounds like you are on the right path. Be patient and give it more time for more and better results.
Posted 7/17/2018 3:59 PM (GMT -5)
Patience really is key. Give yourself time to heal and take it easy. Patience is key.

When I was in a *REALLY* deep flare and on Prednisone, I had all sorts of issues with my muscles and joints. I could barely get up and down my stairs or in/out of bed. It was awful.
Posted 7/18/2018 7:22 AM (GMT -5)
Glad you are seeing some positive results!
Posted 7/18/2018 1:16 PM (GMT -5)
Patience is key, and it helps to look big picture. I started to get discouraged last night because I had another accident, but then I realized that I walked way further than the last accident and had way less blood.
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