Sick joke?

Dukip
Dukip Member Posts: 40
edited September 2017 in Pain

I had treatment starting in October 2014, wide local excision, sentinel node biopsy followed by axillary clearance, FEC-T chemo, 15 whole breast radiotherapy, 5 boost to tumour bed.

I cannot accept the level of pain I am left in, I feel so abandoned by my team. I have stared Gabapentin for the nerve pain, and am up to 2700 mg per day and it is not touching my pain.

I am in pain across the right of my upper chest, all through my axilla and down my arm, even walking sends pain signals all through this area. It feels like there is barbed wire all coiled round inside my body that twists and tugs as I move about. The only relief I get is to lie naked waist up on my bed and lie very still - well I won't enjoy my life much if that is all I can do!

Why is it acceptable for me to be left like this? I also have lymphoedema in my right breast with the most hideous scar that you could store spare change in if you so wished.

I feel so pissed off at my situation and can't seem to find a way through.

Not sure why I am posting this rant, just hoping some of you can help me with suggesting some coping mechanisms?

Thanks for reading my rant and apologies if I offend.

XX

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Comments

  • New-girl
    New-girl Member Posts: 358
    edited June 2016

    I am so sorry for all the pain you are experiencing.  Can you see a pain management doctor?  Have you told your doctor in detail what is happening with your pain level?  My experience has been you keep talking until someone listens.  My first breast surgeon left me in terrible pain for a month before another doctor got me some relief.  Look at all methods too.  Yoga helped me to relax and deal with the emotional trauma.  Get adequate drug levels given to you. 

    Breast cancer is bad enough without suffering in pain constantly. 

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2016

    Being in pain in this day and age is unacceptable. Doctors worry too much about addiction but I've gotten myself off morphine three times including Fentanyl patches! When I don't need my pain meds it only nauseates me to take them. When I do need them it's to be able to function as a human.

    Pain is very hard to control and you have to take something BEFORE you are in pain as it's harder to bring down the pain level once it gets too high. See a pain specialist. There are so many gentle meds that could help you. I wouldn't be surprised if they started you with Amitriptyline as it works well with an unknown pain source and isn't a narcotic.

    You have the right to be pain free.

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  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Dukip....Im so sorry you are in so much pain. I get it! I have an autoimmune polyneuropathy that renders me with pain all over. Since my BMX it now includes my breasts and axillary. What you describe sounds like neuropathic pain which can be horrible. I agree you should see a pain management doc. The Neurotin is obviously NOT working. I take Cymbalta for my neuropathy. For me it worked better than any of the conventional drugs. No you should not have to live like this. Chronic pain is eroding. Good luck and keep us posted....

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  • Dukip
    Dukip Member Posts: 40
    edited June 2016

    Thank you all so much for the responses. I am with a pain clinic (in the UK), I have tried Amitriptyline with no success, I am trying Gabapentin, I can tell it is not going to work. Doc says Pregabalin next. Failing all of those then Paravertabral Block injections. Have any of you experiences these injections? Do they work?

    New-girl, no I didn't think of yoga, been meditating, but will look into that, thanks.

    Barbe, my pain has been getting worse and worse since October last year, I have seen a surgeon three times, first I saw the one that did my surgeries, he almost pretended like he didn't hear what I was saying! Then I saw him again in January, this time he sort of acknowledged what I was saying but didn't respond. Then I saw another one, who referred me to the pain clinic. The doctor at the pain clinic after assessing me announced 'this pain is going to be very difficult to treat' - thanks doc!

    Dtad, thanks for the reply, I have not heard of that drug, I am off to google it now.

    Thanks all for listening.

    XX

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2016

    I have Fibromyalgia which is a pain syndrome that is very hard to treat. It exacerbates any pain I do have which also makes it excruciating but someone else would just say ouch. Good luck, sweetie, and keep us posted!

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  • Maya15
    Maya15 Member Posts: 323
    edited June 2016

    Dukip, definitely not acceptable for you to be in that much pain. I agree with comments above. Have you had a referral for physiotherapy? I have pain in axillary and all down my arm that feels like wires twisting all the way down, and it is. Mine is axillary web syndrome (cording). It's treatable with physio. I know it's not that easy to get referred in the UK (need a good GP, dealing with NHS waiting lists), but you've been in pain so long it's worth a try.

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  • mom4kids
    mom4kids Member Posts: 5
    edited June 2016

    I am so sorry you are going through all of this. I am also having pain from radiation. I am still working on how to work with the pain. Hoping that you have a treatment that works for you soon.

    The whole process is so frustrating.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited June 2016

    Cymbalta on top of the gabapentin helped me. Hope you get help soon.

    Brenda e

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  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Cymbalta is an anti depressant that works on neuropathy pain too. Pain and depression neurons are interrelated. You can't have pain without depression and vice versa. Good luck to all.

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  • Dukip
    Dukip Member Posts: 40
    edited June 2016

    Thank you all so much for taking the time to reply. I have decided to be a warrior . . . well an annoying woman anyway. I am just going to keep annoying all of the doctors until somebody gets so annoyed they decide they have to find something that works.

    I wish you all well.

    XX

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  • niknakrockstar
    niknakrockstar Member Posts: 1
    edited July 2016

    I has surgery Feb 2014 - lumpectomy & sentinal node biopsy, followed by an aggressive chemo and radiation plan. As well, I started taking tamoxifen in August 2014. I live in chronic pain since the start - about 2 1/2 years now. It usually is all through my left Breast, down my ribs, my shoulder, neck and arm. Doctors say it is nerve damage. It could go away eventually, or not. I also have lymphedema in my breast and armpit and upper arm areas. I have tried everything... physio, accupunture, massage, supplements and drugs. Nothing seems to work. I am on oxy 24/7. I also take Lyrica and Amitriptyline. Even with all this I still get bad pain. it is difficult and frustrating. People in my life do not understand... they assume that because I don't look sick anymore then everything is fine. But I deal with chronic pain and chronic fatigue. I think the tamoxifen is mainly responsible for the fatigue and it can also increase pain. The challenge is accepting and learning to live with my new normal. I have found that essential oils help ease the pain a little and also an ice pack. And sometimes none of my methods work and I just lie in bed and suffer through it. I don't think it will ever go away. I spoke to a radiation tech and was told that a lot of women have long term damage and pain from radiation. The really can't do anything to fix it so I just keep trying different levels of pain killers until I find something that works. It is a long process finding the right balance. But I guess I should just be grateful that the cancer didn't kill me. But it is hard sometimes to stay positive while living in constant pain.

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  • flaviarose
    flaviarose Member Posts: 442
    edited July 2016

    I live with someone who has chronic pain. It is called RSD, or CRPS - Reflex Sympathetic Dystrophy or Chronic Regional Pain Syndrome.

    My husband broke his foot skiing..... and it has evolved into a whole body pain complex many years later. An injury or surgery can do nerve damage that spirals into this debilitating condition.

    I'm not saying that all chronic pain is RSD - but it might be something to look into.

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  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited September 2017

    flavia, I have crps/rsd I have had it for a few years. I currently receive ketamine injections (work well) and take gabapentin at a high dose. I had it diagnosed through a tri phase bone scan. It's really done a number on my life. I had to retrain for a new career which I just started and yay now have breast cancer...lol I'm gonna get sick of lemon

    How does your husband manage his?


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  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited September 2017

    just realized how old this thread is, sorry about that!!

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