Chemo induced Fibromyalgia

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  • Justkeeponsmiling
    Justkeeponsmiling Member Posts: 3
    edited November 2016

    Lita57 : Thank you so much for your reply. I'm in South Africa and we are not very aware of all the SE's.. If it wasn't for this forum I wouldn't have known that there are so many of us suffering like this... But i suppose it's the road we have to travel, there is no turning back for us....

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  • Diane1974
    Diane1974 Member Posts: 2
    edited November 2016

    I'm so happy to find out I'm not alone. I am dealing with the all over body pain too. I take a scary amount of pain pills. Lyrics works great. I did wean off opioids- now on suboxone which is much safer. God help us all

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  • Blownaway
    Blownaway Member Posts: 760
    edited November 2016

    I saw the rheumatologist who checked me for everything and found nothing so this proves all my pain is just neuropahy. He suggested I try Cymbalta and prescribed the generic. It has taken my pain level from an 8 (on a scale of 1-10) down to 0. I take it in the morning and contine to take 600 mg Gabapenin at night. Hope you all get some relief also.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited November 2016

    Thanks, Blown, I'll keep Cymbalta in mind for the future as they transition me to AI's.

    L


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  • LovesLoons
    LovesLoons Member Posts: 68
    edited November 2016

    I don't think many docs are good at diagnosing fibro. Many just use it as a label for pain when they can't find a specific cause.

    This happens in Lyme disease (and other tick-borne diseases) as well. The tests are terrible at picking it up. It may be that some patients get chemo and then an underlying or smoldering infection comes out to play. Lyme/TBDs can cause all sorts of nastiness including pain and memory issues. Doctors are even worse at diagnosing these because they believe the tests are 100% correct.

    I'm not saying that is the cause for anyone's issues--but since it is an infection that can lie dormant, it is certainly possible. Only a Lyme expert will be good at diagnosing tick-borne diseases. A good resource is the movie "Under Our Skin," books "Why Can't I Get Better? and "Cure Unknown." Among many others. :) Just something to think about.

    I hear you about all over pain. It's awful, awful, awful and can wear you out physically and mentally. Take care. :)

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  • Marine20
    Marine20 Member Posts: 5
    edited December 2016

    Hi.

    I've had fibromyalgia for 16 yrs and March 2016 I got diagnosed with invasive ductal carcinoma grade 3.

    I was told there was a chance that my fibromyalgia would get worse and it did.

    Now I'm registered severely disabled .

    I have aids in my home to help with bathing.washing.dishes.

    The way I see myself now is I can still get out with my walking frame , I'm still having a laugh.

    I'm a fighter and I so hope I'll never have this horrible disease again.

    I was the only member of my family to ever encounter cancer but it will not beat me.

    You have to stay positive and keep fighting for the rest of your life.

    It was my choice to take the chemo as it was giving me a better chance over the next 5 yrs to not get cancer again but I was meant to do 6 cycles of t-fec but I ended up with pulmonary embolisms in both lungs and collapsed on my hall floor as I couldn't breath. So I only did 3 cycles of fec and cancelled my taxotere.

    My oncologist agreed that I did do the right thing.

    I had to get 20 sessions of radiotherapy which went well.

    I finished 28th Oct 2016.

    Hoping never to see those departments again.

    Keep up your spirits and keep fighting .


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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Marine,

    You're an inspiration, and you have a wonderful outlook on things, despite a rough road. Thank you for sharing your story and we hope you continue to post to encourage others, and share your positivity!

    Welcome to Breastcancer.org!

    --The Mods

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  • Marine20
    Marine20 Member Posts: 5
    edited December 2016

    I saw my oncologist on Tuesday 20th Dec.

    All is well

    I don't have to see my surgeon until may.

    I will have to have some reconstruction but I'm glad to have a break from hospital appointments.

    Meery Christmas to you all

    No matter what life gives you

    You have to fight

    Don't let this disease get you down.


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  • Heyjude101
    Heyjude101 Member Posts: 1
    edited February 2017

    I was just casually searching the web to see if this is possible as my nerve pain is so bad it literally makes my legs and arms jump from the shooting pain. My oncologist also says it's unrelated to the chemo I had which also included Taxotere. I am now finally on Gabapentin after being tossed around from doctor to doctor. A pain specialist finally listened! I'm feeling much more in control of my life but it took awhile to not be spacey from the Gabapentin. I think this is definitely a form of Fibromyalgia brought on by chemotherapy

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  • Marine20
    Marine20 Member Posts: 5
    edited February 2017

    it defo sounds like you have chemo induced fibromyalgia. I didn't think that was possible until I saw it on the macmillan nurses online site.

    As I already had fibromyalgia the chemo made it a lot worse.

    Now I'm registered severely disabled

    It was a big shock to know that the chemo could make it a lot worse but me thinking I'll be fine.

    That won't do anything to my mobility

    How wrong was I

    Now I'm a fighter and keep trying to push myself to do things thinking I'll get my mobility back but all I do is cause severe pain

    Looks like I'll always be this way but I'll will still keep trying. Plus I didn't take my taxotere as after I started to see me mobilty getting worse and ended up with clots in my lungs I couldn't take the risk of taxotere make me lose the feeling in my fingers and toes.

    My mobility was bad enough


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  • Lisamichelle
    Lisamichelle Member Posts: 1
    edited September 2018

    Yes, I have the same issues that you are having except the burns to your hands and feet. I finished chemo 2 months ago and still have bad fibromyalgia which I didn't have until I started chemo. I was wondering if you still have this issue now? I was hoping it would go away over time.

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