Hurting all over is it fibromyalgia rrlated to chemo

Hi there im at my wits end

I had breadt cancer stage 3 in mybleft breast I had a mastectomy and lymphnodes removel in 2013 I have had lots of joint pain cramps sweats to name a few

Inhad radi and chemo followed by tamxifen

I have just had a transflap reconstruction , and mastectomy of my other breast

The problem is I hurt rverywhere and all my sytkms lead to fibromyalgia

Inhave became so sentive to chemical ie soap perfume noise and even bright lights

It is easier to list my problem

Jointpain most joints burningbpain in my body , delsyed reaction severe craving for chocolate, headache, vision chsnged,morning stiffness muscle teitching, firget my words allergies runny noee, earache, riging in my esrs , broken sleep, severe fatigue, teeth grinfing my jaw clicks, loss of sex drive, bloating, pelvic pain, forget things didorited tingling burning, shirt memory, sentive to westher im slways vold or ill have magour hot flushes, depression, moody, bruuse easy severe leg cramos, dry mouth and blusters, sore throat, night swaets, cold hand and feet, balance,

I know its alit I wrote a list down over a few days and was shocked I dont have all of these at the same time

.I know dome are side effects of tamoxifen I taken fentlhn fof a previous bavk problem anc have been given wuintind for leg framps and gabapentin for nerve damage I know it early days after my op but the pain is in my other joint too

I dont know how to sort this out

Please help Smile

22 Replies

  • Sorry about soelling mistakes

  • You have gone through an awful lot I'm not surprised you feel the way you do, I can't be of any real help with this except to wish you all the best, and no one worries about spelling on this forum. Lou xx

  • cheers

  • Don't worry about spelling at one time I could have won any Spelling Bee and now often even if I have spelt the word correctly it looks strange.

    You have been through a tremendous amount and cancer, chemo etc can upset everything in your body. I know my old boss who was on Tamiflexen had some strnge symptoms.

    Often people on the site have reported that fibro started after a period of prolonged stress or illness it is as though the body just goes into a mini meltdown. I know I have some strange symptoms which come and go and I can have several at the same time and then they can go away for days and then return. One day my glasses seem to work perfectly well and another my eyes seem all blurry. I can have tingling in the lower part of my body and up my spine and then the next day it is gone. I can have IBS for days even though I haven't eaten anything that I don't normally eat there seems to be no rhyme or reason with it. Other days I can hardly move because of the joint or muscle pain. It seems sometimes I have the worse flu ever even though I know I don't have the flu but it is the only way I can describe it.

    As you say it is early days after your op. and it could be the way your body has reacted. It is worth going back to your gP and having a talk perhaps taking your list of symptoms with you to see what is being caused by what. Please let us know how you are doing and how you get on.x

  • Cheers. l was hurting before 0P with aches and pains I just put it down to chemo. I have had a op on my back before Cancer and never been right Since reading the symtoms OF Fibro's l ts like reading my own diary it was so Scary i or relate to nearly 90% of it '.I also have ashmaI. I'm the morning and gonna make a appointed

    I have become so bad temprred when people eat and I can hear them also people breathing loudly and when im cold the pain is worse

  • Hi I have just read you're was really weird seeing you're post.

    I to had breast cancer stage 3,lymph nodes 23/24 cancer, had mastectomy to left side,chemotherapy,radiotherapy and then a year of hecptin given every 3 weeks through pic line this was in July 2011.

    After finishing radiotherapy I had a pain in my ankle,dizzy spells. Then the pains spread the sweats,balance,numbness in hands and the list goes on very much the same as yours.

    I have been to many doctors and a couple of months ago was referred to a rheumatologist who diagnosed fibromyalgia. I was fit and well before this I. To had reconstruction to both sides in May.

    My understanding from what I've been told trauma can start it

    My Wrists kill me every min of day.

    So I guess my trauma started it.after my op it hits a high.

    Hope you ok now

    Trace x

  • Thank you for your reply I am thinking more and more it is fibro but im not sure how to put it to my doctor

  • Hi you say you're on gabapentin for nerve damage, that is what I was on at first, I think you just have to be open with your doctor, even though they aren't always with us, as I do feel that all the treatments caused this, but a I am still here!!

    Just tell your doctor that after being in such pain etc you looked it up and wounded if it could be fibromyalgia and see if they can send you to see a rheumatologist, my doc when I asked if treatment caused this, said maybe.

    Let me know how you are doing.

    Trace x

  • I will do thanks

  • I have read your post with so much pain and sorrow for what you are having to endure, and I want to genuinely hope that you can find the answers that you so desperately desire and deserve. I would discuss this with your GP or Medical Specialist and let them know exactly how you are feeling and ask them what they can do to help you, as nobody should be left in this way to suffer.

    All my hopes and dreams for you


  • Hi there, so very sorry to hear about all you've been through, and what you are still suffering from. First of all I would ask if you've ever had your levels of B12, ferritin and folate tested? Also VitD? I think all our vitamin levels can be destroyed when you go through all the treatments and surgery that you have had. I'm not claiming it is the total answer to your symptoms, but could certainly explain some. Have a look at the Pernicious Anaemia Society website, and the symptom list on there. I've had most of the ones you list, sore burning skin, tinnitus, short memory, muscle twitching, cramp, fatigue, etc.... I now have B12 injections and have recently bought a VitD supplement too. Good luck with feeling better soon. MariLiz

  • I hope so its doinb me head in

  • I did have a low b12 score a while ago but the doctor said other test said it wasnt my bofy stopping itself from making it more was what I was eating

  • Rulookingsmiler,

    Whatever your doctor wants to imply about your diet, the fact of the matter is that you have low levels of Vit B12!!

    B12 and vit D are required for practically every function within the body so you need to get your levels up.

    If you suffer from any autoimmune condition, like hypothyroid, RA etc your condition will most likely be preventing you from absorbing B12 in your gut, so whatever your diet, you will not be able to absorb it from your food.

    EITHER- address the problem yourself by taking sub-lingual B12 (ie absorbed under your tongue so it bypasses your gut)

    OR - go to your GP and request testing for B12, follate, vit D3, iron. Do not take supplements until after your blood test as this will skew the results.

    Ask your GP to give you the results and the ranges Ideally, your B12 needs to be over 500 and at best, around 1000. x

  • Just trying to get into the doctors is a nightmare

  • Finaly got in to the doctors and dhe was prrtty nice to me I went with my mother as support as my husband was working

    I Gave the doctor a list I had written down and explaineit the gest way I coukd I got a liitle upset in there told her I havent had no full sleep for days she has given me some zopiclone sleeping tablets and also sending me for blood test for lots ofvt hings hooellynill grt sorted out quickly

    I then bave to go go back in 3 weeks timeshe said need to rule out a few thungs but least the ballmis rolking

  • Hi glad to hear that you managed to see the doctor.

    And that's what they did with me first, i.e. lots of tests to rule out other things.

    Hope the sleeping tablets help.

    Keep us informed how you get on.

    Gentle hugs trace xxx

  • I had a little bit of sleep last night thanks to the sleeping pills

    And I had my bloods done today

    Just waiting on the results now

  • Still waiting on results cant sleep

    I am worried I cant stop eating bars of chocolate Imean8 or 9 today

    I tried to stop but ut beat me I wont be getting and more

    Is there and reason ive started craving lots of chocolate

  • Sorry havnt been on

    ,ive been for check up with my surgeon hes happy with the results but says maybe3 more ops to wort reconstruction out im just waiting now

    Also says the stomache pains are of ops

    he not sure what other pains are caused by I told him im waiting blood results

    Which should be avaible 2sep when im back to see the doctor

  • Tamoxifen 1

    Methocarbmol 750 x2 4 times a day 8t

    75 fentanyl patches every 3 days

    Orah morph when needed

    Trazodone 100mg x1

    Mirtazapine 45 x1

    Gabapentin 300x2 x3 a day 6t

    Lansoprazole x1

    Centrazinex x1

    Senna x 2


    Oruvail gel

    Shampoo Double base cream

    Fosfir pink inhaler Salbutamol blue inhaler .

  • Well I got blood results back they are ok

    My doctor said they cant do muvh for me as they dont know why

    im hurting so much

    She said maybe fibro

    My doctor hasnt got a clue I dont think she believes the aches pains and everything else im in

    She asked if I wanted to be refered to pain clinic or rhumotoid clinc im not 100 sure which one

    As the words just wouldnt go in

    Any help would be appreciated

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