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@athenalee

I have pretty severe muscle and joint pain, particularly in my back, neck, and hands. My legs get very stiff when I get up from sitting and lying down. It’s worse after walking, standing for more than an hour or so, and sitting at my computer. I have read all about Tacrolimus and had assumed it was that. Since I’m five months out and it is continuing to get worse my doctor wants to eliminate other possible causes. So, since I’m quite underweight I’m getting a bone density scan to check if I have osteoporosis. Next may be a neurologist, as I also have worsening tremors and numbness in my leg.

Re: pain and sleep, have you tried melatonin? Chamomile tea, kava, and similar herbal sleep remedies can interfere with Tacrolimus, so best to avoid. I take 1 or 2, 100 mg caps (the lowest dose) of gabapentin at night. It doesn’t help with pain other than nerve related (so it helps with liver pain), but it is relaxing and really helps me to sleep. It isn’t metabolized by the liver, so doesn’t interfere with Tacrolimus. I hope you can at least find sleep soon...it’s so important for healing and wellbeing.

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Replies to "I have pretty severe muscle and joint pain, particularly in my back, neck, and hands. My..."

The fifth doctor I saw tried prednisone (unsuccessfully) and ordered a knee MRI. They found I have bone marrow edema, consistent with calcineurin inhibitor pain syndrome (CIPS). I’m already on a low dose of Tacrolimus, so right now they’re managing the pain with Gabapentin. I’m up to 300 mg at night, but 100 mg is enough during the day. My symptoms are similar to yours. It started in my knees and hips, and within a few months all my joints were affected. If I sit too long I can barely stand up. I’ve found stretching and low impact exercises help immensely. If I don’t stay on top of it my muscles tighten and the pain is worse. At least with the meds I’m sleeping! Thank you for the well wishes. I hope you are better soon. Does the gabapentin help the numbness? I know it’s used to treat neuropathy.