Help needed, not sleeping due to lymphodema in my arm

I started with lymphodema  in early December due to stage 4 breast cancer that has spread to the bones. I was prescribed compression sleeves but started to struggle again in January so went back to the lymphatic nurse who ordered me more sleeves. Over the last two months the pain in my arm has got worse, especially at night keeping me awake, the little bit of relief I get is to sit up in bed. Today I had my first chemo session and the pain in my arm has started much earlier. Can anyone advise please on what pain killers I can take whilst on chemo?

  • Hi Bramleyhill.

    I am so sorry to hear about the pain you are having with Lymphoedema in your arm. I hope that your first chemo today went well. Do you wear your compression sleeves all day and night? I have had bilateral Lymphoedema in my arms and legs for the past 15 years, following 2 bouts of breast cancer. I wear the ordinary compression sleeves by day, but wear thicker, ribbed ones, at night. These are much thicker than the ones I wear throughout the day, but they are very comfortable to wear. I didn't have chemo, so cannot advise on medication, but I do hope that you find some relief.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx 

  • Thank you for replying, I contacted the 24hour cancer care nurse and asked if I was ok taking codein phosphate and she said I was ok taking them whilst having chemo. The sad thing is I have managed one hour of sleep so not really a solution to my problem. She advised to keep taking them until my appointment on Thursday with the lymphodema clinic

  • HI Bramleyhill

    I really feel for you, as you cannot function on that amount of sleep. How many sessions of chemo are you having? You didn't say whether or not you wear night sleeves on your arms - I found that these do reduce the pain somewhat. Difficulty with sleeping is a common problem with cancer treatments and I do hope that this improves for you. If not, would you consider mindfulness? This helps some people to drift off.

    Kind regards,

    Jolamine xx

  • Hi I am having six sessions of chemo, one session every third week. I do have compression sleeves for day and night, the night one is a robbed one but I also have a chest one that I alternate with the sleeve. I went to A & E yesterday as the pain was excruciating and the Dr advised me to double up on codeine, with paracetamol especially when I go to bed so at the moment I’m trying that until my appointment with the lymphatic nurse on Thursday. 

  • Hi Bramleyhill,

    I am  so sorry to hear that your pain increased, to the extent that you had to attend A & E yesterday. It is reassuring to hear that you can increase your Codeine and Paracetamol and I sincerely hope that this works for you tonight. I am glad to hear that you have an appointment with the Lymphoedema Nurse on Thursday and hope that she can suggest something which will be more effective.

    Kind regards,

    Jolamine xx

  • Thank you, I am pleased to say I am much more comfortable today 

  • I am so glad to hear this. Dd you sleep any better last night, with the increase in medication?

    Jolamine xx

  • Yes I slept much better and the pain has almost gone now thank you

  • Hi Bramleyhill,

    This is great to hear and I hope that it continues to be the case.

    Jolamine xx