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Does anyone else experience extreme joint and muscle pain?

I am 1 year and 18 days into the correct diagnosis of Crohn's. I've had 5 bowel obstructions and 6 weeks ago bowel resection. I take Remicade infusions every 8 weeks and I am still experiencing extreme and intense pain. To the point that some days I can not raise my arms or bend my wrists, others I can barely walk combined with back pain that nearly drops me to my knees. Does anyone else experience this? I am on a low residue strict diabetic diet, have been on and off steriods for 9 months and don't have a clue what more to do? Ideas

  1. Hi . It is completely understandable that continued pain, even with treatment, would be exasperating. Some do experience back pain with IBD and our patient leader Marisa wrote on this topic here: https://inflammatoryboweldisease.net/living/back-pain. Pain in the joints is also not uncommon with inflammatory autoimmune conditions (see: https://inflammatoryboweldisease.net/living/crohns-joint-pain). A good question is whether the Remicade is effective in controlling your inflammation and symptoms. Has your doctor had any thoughts on whether your treatment regimen should be adjusted? If you have not had a chance, you should discuss these symptoms with your doctor. This is particularly true, as autoimmune conditions can often be comorbid and many arthritic conditions are autoimmune. Hoping you get some answers and relief soon and please feel free, if you like, to keep us posted on how you are doing. Best, Richard (Team Member)

    1. My feet and ankles hurt all the time. I've also gained alot of unwanted pounds since I can now eat and not hurt after 20 years of not being able to eat because of UC. I've learned that if I eat the minimum and no red meat, I feel much better. I'm not disciplined at all and I eat lots of junk. So I guess I just need to eat better and take better care of myself.

      1. I hear you. Yes, diet is so important. If you cut out sugar and processed foods you will feel loads better. Start slow. Focus perhaps on one meal where you say, okay for lunch and lunch only I won't have "x". Then slowly add more meals. You will see once you start to feel better you will actually crave the better food. Rooting for you, Elizabeth (team member)

    2. Yes I'm like that as well I'm very bad in the last 4 months not able to walk legs going from under me you need to get xray or more test I'm out of work now 2 months and only have 4 days a month normality......so i got more test done last week mri bloods xrays cause of the back pain and blood lose....hospital rang have to have iron infusions..
      No medication works for me Just relaxes the stomach go back to your doctor or ibs team make appointment

      1. Hi . Hope the iron infusion helps with some of the symptoms. Mind if I ask if you are seeing a rheumatologist? I ask because they are specialists in the autoimmune inflammatory arthritic conditions (my wife, Kelly, was diagnosed with juvenile rheumatoid arthritis at age two and our experience is that a good rheumatologist is worth their weight in gold). Hoping these tests yield some answers. Please feel free, if you like, to keep us posted on how you are doing and to ask questions as you find out more information. Best, Richard (Team Member)

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