Extreme pain with no end in sight!!! Please give me hope!!!

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  • Freya244117
    Freya244117 Member Posts: 603
    edited January 2017

    Wonderful news Cosmo, so pleased for you.

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  • Sue2009
    Sue2009 Member Posts: 228
    edited January 2017

    cosmogirl, I know I am late here, but want to add my 2 cents. Fentanyl patches saved my sanity. I have been on 25mcg for over 3 yrs. I am allergic to moriphine. Also be careful when increasing the dose, when I had a flare it was suggested to put 2patches on. This made my muscles twitch so much I was being lifted off my bed. I too take flexeril at bedtime to keep muscles spasms at bay. Last thought , after my mastectomy (bilateral ) I was in so much pain when I woke up at home. I could barely lift my arms to turn off the alarm clock . After reviewing my meds I saw that Lipitor could cause severe muscle pain. It was a new med started by a cardiologist. When I stopped the Lipitor the muscle pain disappeared. Also aromasin caused severe joint pain. Stopping it helped, but my cancer started to progress after that. Sue.

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  • Aoibheann
    Aoibheann Member Posts: 555
    edited January 2017

    Hi Cosmogirl,

    I'm also late in reading your post. I just wanted to make another suggestion which is to think about adding lyrica to the mix. I have severe pain with my bone mets and as well as the 75mg fentanyl patch, I take 150g lyrica twice a day. This is because as well as bone pain you might also have nerve pain (lyrica is for nerve pain). Somebody suggested taking cymbalta which is also good for nerve pain but I had a bad reaction to it. I also take oxynorm for breakthrough pain and paracetamol.

    On another issue I see that your lymphoedema nurse has advised you against having your arm etc. massaged. I'm very interested in finding out a little more about this as I too have lymphoedema. It developed in my right arm after I had a pin inserted as my humerus was eroded by bone mets. The arm is driving me insane! It feels so heavy and draggy and really wearies me. My onc and physio are reluctant to give me MLD as, like your nurse, they fear the cancer spreading to other areas. I don't really understand the reasoning as surely by being stage iv the cancer has spread and is in my blood and lymph. I mean they test the blood for cancer markers. I know they don't know what causes it to jump to our organs and I don't want to take any chances but I would love to have some relief for my blinking arm!

    Glad to hear that you are feeling so much better. Take care

    Aoibheann x

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  • Cosmogirl
    Cosmogirl Member Posts: 30
    edited February 2017

    Thank you Sue2009. I have increased mine up to 100 micrograms and it's working. I would say I am 90% there No muscle spasms, drowsiness, sickness or tiredness, no side effects at all. I don't want to stop taking my Tamoxifen as the risk is too great. If I don't get to 100% pain relief with Fentynal then I may well mention to my GP to include a nerve pain related medication in the mix.

    Aoibheann, hello and sorry to hear of your dilemma. I would definitely recommend seeing a Lymphoedema Nurse. Mine gave me a compression sleeve and glove. These work great and reduced the swelling in my arm from not even having a visible elbow down to exactly the same as my good arm. With massage, the worry is that, by doing so you, can inadvertently push cancerous cells across the body (chest/back) into the healthy side of your body. Go for the sleeve and glove to reduce the heavy dragging arm but avoid the massage, it works great for me.

    Thank you for the heads up on Lyrica. I will add this to the mix if I do not get to 100% pain relief.

    Thank you all for your help.

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  • cliff
    cliff Member Posts: 290
    edited February 2017

    I too have stage 4, but no chemo or rads, only tamofloxin pill every day. and an exgeva shot every month to prevent bone loss. its the exgiva that gets me, 6 days of extreme pain after every shot. the one month I didn't get a shot for dental reasons, there was no pain. I have tried taking ibuprofen before breakfast and every 4 hours on the day of the shot, along with plenty of fluids, and it seems to be working. it seems we all have different side effects from meds.

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  • EWB
    EWB Member Posts: 2,927
    edited February 2017

    I have similar pain - deep achy constant pain that feels like it is deep in the bone, muscles and joints. Hands feel swollen, badly bruised with someone jabbing a fat needle in the joints. I was on femara for 9 1/2 years and recently switched to arimidex. Once I changed meds the pain improved...not altogether gone but more manageable. I am on ms contin and percocet, warm heat (hot bath or hot tub) is helpful and careful planning of my day also helps. Nothing makes it completely go away. Also noticed that what time of day I take the femara/arimidex changes the amount of pain I have. Bedtime is much better than morning. Really hope the docs are able to sorted it all out and you are feeling better soon.


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