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MDS - diagnosed 26 years ago but have noticed more pain and aches in my body over the last 6 months. Has anyone else experienced this?

Daisypetal60
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Have MDS 5q-. Diagnosed January 2000. Frequent blood transfusion now 2 units every 3 weeks. Noticing more joint pain and aches in my body in the past 6 months. Not sure if age related as now in my sixties or part of the mds. My sleep pattern is atrocious as the pain keeps me awake even after taking pain killers. Does anyone else suffer with this if so any remedies to suggest? Finding it hard to function in every day life as frequently tired/exhausted. Any help much appreciated 

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    Call this number 0808 800 4040 to see if a nurse can help. Good luck. I’d also email or phone the team to see if they can fit you in. Hopefully you are offered another appointment to discuss your concerns face to face. Take a pen for note making. 

  • Hello Daisypetal60 and welcome to Cancer Chat forum.

    I'm sorry to hear about the increase in aches and pains you've noticed over the last 6 months. This must be very difficult to live with, especially if the pain is keeping you up at night.

    I hope this information we have about treating cancer pain and managing fatigue will be useful but as bone-cancer-patient said, it may be worth getting in touch with your GP and/or medical team to have a chat about this (if you haven't done so already) to find out how they can help or if any medication can be offered to keep this under control.

    Our team of cancer nurses are also available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m

    Hopefully some of our members who have contended with similar issue will offer their thoughts and advice to you soon but whilst you wait, you may be able to get further help and support from Blood Cancer UK and the MDS UK Patient Support Group.

    Kind regards,

    Steph, Cancer Chat Moderator

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