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Amazing Grace (alive but living with nerve pain)

OBI
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 I just looked back at my first post when I had to tell my partner that I had cancer. He is still with me and we are very happy. I had a bout of chemo for CLL in 2012. I became allergic to the chemo drug but I went into remission. I developed shingles and had problems with my vision as I had shingles in one eye. In 2014 I developed breathing problems and severe anemia. I had constant blood transfusions and the Hematologists decided to treat my CLL again. A year of Chemo and at the end of it I was left with incredible pain. At first the doctors thought it might be arthritis with lots of tests it was found I had nerve damage. With winter setting in I have been in excrutiating pain which has left me depressed and exhausted. Am I the only one who has had severe nerve damage and extreme pain?

 

 

 

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    Welcome back to the forum OBI!

    It's so nice to hear back from you and to hear that your partner has been so supportive and you are happy together.

    Sorry to hear you are in great pain though. It might be worth going back to the doctor and seeing if they can prescribe you something to relieve this extreme pain as it must make your life difficult.

    I hope others who have suffered severe nerve damage and pain following treatment will see your message and share their experience with you. It might be worth editing your title and including a reference to your nerve damage and pain so that others can spot it straight away.

    Best wishes,

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Thank you for the advice moderator Lucie, have edited the title.

    I have been back to the doctor several times and she has referred me to the pain management team who saw me once gave me some things to try including a tens machine which I have still not recieved yet. The pain doctor discharged me before the pain was under control and I am now struggling. 

    I wonder if the pain ever reduces to a manageable level?

  • Offline in reply to OBI

    I love the new title OBI! Fingers crossed someone else living with nerve pain will see it and share their own story of how they are coping with nerve pain.

    I also forgot to mention we have some really lovely and knowledgeable nurses who may have some tips for you. You can ring them Monday to Friday from 9am to 5pm - and it's a free number from UK landlines: 0808 800 4040.

    Very best wishes and I hope today is not too bad a day painwise for you,

    Lucie

     

     

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    Hi, just scanning the queries and I noticed 'nerve pain'.  I have been experiencing this over the last pain and am told it may be related to chemotherapy from sometime ago (3 years).  My GP has put me on Gabapentin which is helping, providing I keep to the regime closely.  Ask if you can give it a try, it may help.  Good luck.

     

    Jent

  • Offline in reply to Jent

    Hi Jent thanks for the reply! I am on Gabapentin in fact I am on almost the maximum dose. I was taken off morphine due to it's adverse effects on my breathing. Now I have patches in addition to the gabapentin and the tens machine(hmmm)

    Having been to see my gp recently I have been told I have chronic pain which is very unlikely to go away. I do have good days and bad days but at the moment the bad days far outweigh the good.

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