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RLS-whole body

Hello,

My husband was diagnosed September 2020 with bladder cancer and has undergone one round of BCG. A new tumor is present and he will undergo a TURBT and 2nd round of BCG next month.

He has been experiencing RLS every night for most of this time, however, it is not just his legs, but his entire body. Needless to say, the interrupted sleep is beginning to take a toll on him.

Is this a common side effect of bladder cancer? I've read online the suggestions to ease this (no caffeine, exercise, warm baths, etc.), however, I would be thankful to hear from anyone who has experienced this first hand and has any information and/or suggestions.

My husband is very slow to seek medical attention.

Thank you.

  1. Hi , let me start by saying your husband is lucky to have you. I'm happy you reached out. To confirm when you say RLS are you referring to Restless Leg Syndrome? We are not a medical community so we cannot offer medical advice only personal experience and known research.


    I will say I personally have not seen anyone mention bladder cancer and restless leg syndrome within our community. It doesn't mean it can't happen, but not commonly associated. You also mentioned that it's his entire body, is he involuntarily shaking? Also curious, has this been happening since he was first diagnosed?


    - Jada (BladderCancer.net team member)

    1. Thank you. Yes, I am referring to Restless Leg Syndrome, however, the symptoms are within his trunk as well. No involuntarily shaking. Yes, this began after he was diagnosed. Previously, he did not have trouble sleeping.

      1. @Ruby Rumi - thank you for being so supportive of your husband and the challenges he is going through. Being a caregiver is not an easy position to be in but I am sure your support of him is greatly appreciated. As for RLS, I had it for a while years ago - before my BC diagnosis, and it rears its ugly head on occasion but not as often. Not sure why it impacts me only randomly but honestly it seems to be - this might sound wierd - mainly when I would be in a movie theater siting in seats where my feet do not always touch the ground. I am rarely comfortable in those seats for some reason. Probably just me. I would suggest that your husband run this by his medical team as even if they have not had it come up before, they may have suggestions on how to relieve it. My best to you both Linda ( moderator, Bladdercancer.net team member)

        1. Thank you. We plan to discuss this at an upcoming appointment. Appreciate your comments and I hope you are doing well.

        2. @Ruby Rumi I love that you always say "we" and are clearly a team with your husband when it comes to fighting this disease and all the associated things that arise. I hope that you are able to get some answers for the RLS and come up with a solution. My best to you both ! Linda ( moderator, Bladdercancer.net team member)

      2. @Ruby Rumi - I am doing very well thank you. I look forward to hearing what the doctor has to say about the RLS symptoms. I have it very infrequently now and mine is only my right leg which may be weird. Linda ( moderator, Bladdercancer.net team member)

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