B12 deficient and peripheral-neuropathy

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Hello, has anyone had experience of this?

Thank you you

  • Hi Jocasta

    I had chemo for Endometrial Cancer in 2022 and have been left with peripheral neuropathy. It started from the first cycle, persisted with each following cycle and now is viewed as permanent. My chemo dose was adjusted to prevent it getting worse. 

    I did ask at a check up if B12 supplements would help the neuropathy and was told only if I was deficient. I asked if there was any harm in taking B vitamin supplements and was told this was ok for me to do. I feel it has helped with the chemo fatigue but not sure about the neuropathy. I find the thing that helps most to be honest is to keep active - for my feet and to do things like knitting etc for my hands. On days I don't I have more symptoms. I was recommended to do hand exercises with spiky and soft balls (bought on internet for arthritis sufferers) and they help. I figure anything to get the blood flowing to the area. Also warm gloves and socks do help.

    It's not great at times, but it is manageable. I was prescribed amitriptyline by my GP, it helped a bit but I didn't like the way it made me feel so get by without it. There are other medications available that can be tried. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Jane,

    Thank you for responding.

    I started B12 injections yesterday and have to have a course of 6 over two weeks. I will ask about supplements as I'd already purchased some and it might help with the fatigue.

    Have you had any improvement in your feet as the time has progressed? Mine feels like sand in between my toes and it's very uncomfortable, especially at night. I've bought some compression socks and I have been prescribed Gabapentin, but I'd rather not have to take it long term.

    At the moment I don't have the energy to do exercise. If I can get round the supermarket that is an achievement. My fingers are not too bad, but I will get a ball. I feel that I'll not be able to walk, garden or cycle again. I was previously quite active.

    I'm glad to hear that yours in manageable. 

    Best wishes

    Jo

  • Hi Jo

    I was prescribed amitriptyline by my GP which I took for a while. It helped but I did not like how it made me feel, so stopped it. My neuropathy started after the first chemo, progressed each time and then I would say it is settling- it's not got worse but it has not got better. I understand the sand feeling, I get a sensation of sort of ants crawling, numbness, pain, can be sharp or it can be a dull ache. Stiffness feeling. The feeling like you have sat on your leg and tried to stand up and have pins and needles. I now get random shooting pains, spasms that seem to happen night time. Sometimes I get a cramp like feeling in hands and feet. 

    I did buy some compression socks that helped for a while and if I use them occasionally they seem to work better. Its movement that has helped the most. Even sitting on the sofa and stretching my legs and moving my feet up and down, making circles with them. With walking- I was the same at first and even 5 minutes would be a lot but I have found it has been a case of doing a little regularly and building up. If I walk too far then my legs will be really stiff, feel heavy and ache. I get a lot of numbness on the soles of my feet and the pins and needles. When I do too much then it would feel difficult to actually move them- almost like before all the cancer- if you have been on your feet all day and literally can't move. Hard to describe. 

    Hot water bottles help. Soaking my hands and feet in warm water. Thick gloves and socks. Massaging them. 

    I have also found the flip flops etc are out. Footwear can make a difference. I wear soft trainers with the textile tops- they give enough support without being too stiff or heavy. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm