Pain

lynn1950
lynn1950 Member Posts: 2,570
edited June 2023 in Breast Cancer #1
Has anyone else read about how common it is for bc survivors to continue pain two to three years after initial treatment? This is the article: Breast Cancer Treatment Leaves Patients With Chronic Pain
Baltimore Sun, 2009 Nov 11 Persistent pain affects nearly half of breast cancer survivors for 2 to 3 years after completion of their treatment.

This is interesting to me, because we don't discuss it very much on here, yet many of us, including me, experience this. For me, pain seems to be a result of my double mastectomy and also Arimidex. The Arimidex is a source of joint pain and finger stiffness.

I had nerve damage after my lymphectomy that has created numbness and tingling in my left arm. But I also initially had cording from my elbow to my chest wall after surgery. Most of the cording has gone away, but I still have quite a bit of tightness and sometimes pain in my chest area. Still, the worst pain is in my left shoulder (bc side). I have limited movement in my arms and shoulders (I had PT and now do Yoga) and sometimes the pain is so bad, I can't sleep. There is also some pain and motion limitation in my right shoulder, but not nearly as bad as the left.

I am really curious to know others who share my experience and what steps they have taken to find relief. xoxoxoxo Lynn

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
    yes pain is real
    I have been in pain for the first 12 months since radical mastectomy and nodes removal. In order have 6 -7 hours sleep I was taking sleeping pills. It has been gradually getting better, but still 16 moths after the surgery I do have it in missing breast and my arm.. I am having lymphedema which contribute to being pain situation as well. I do stretches every day, still feel very uncomfortable, but is getting better as well.
  • lynn1950
    lynn1950 Member Posts: 2,570
    #3
    New Flower said:

    yes pain is real
    I have been in pain for the first 12 months since radical mastectomy and nodes removal. In order have 6 -7 hours sleep I was taking sleeping pills. It has been gradually getting better, but still 16 moths after the surgery I do have it in missing breast and my arm.. I am having lymphedema which contribute to being pain situation as well. I do stretches every day, still feel very uncomfortable, but is getting better as well.

    My surgery was in April,
    My surgery was in April, '08...so it's been 19 months for me. You're right, some of it seems to be getting better and in other spots I feel more pain, as the numbness subsides. So, sometimes I think that being able to feel the pain is a good thing; that it's my body healing??!?
  • New Flower
    New Flower Member Posts: 4,294
    #4
    lynn1950 said:

    My surgery was in April,
    My surgery was in April, '08...so it's been 19 months for me. You're right, some of it seems to be getting better and in other spots I feel more pain, as the numbness subsides. So, sometimes I think that being able to feel the pain is a good thing; that it's my body healing??!?

    I guess pain is better than numbness
    However Sometimes I am wondering could excruciated pain break my spirit? Being in pain for more than a year probably changed me physically and emotionally. Do I still have the will power to fight? Meditation and Praying have been helping .
    BC is very long journey, I still believe that eventually we all be back to normal.
    Hugs
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #5
    Continued Pain, Yes
    Hi, Lynn, I listened to a radio piece on the article. Joint creakiness and stiffness started for me during chemo. Then, pain in my left arm and shoulder began during radiation. My muscles are trying to "freeze up," I was told. My condition is due to the surgery with lymph node removal and radiation.

    I was seeing a St. Louis PT who specializes in treating bc patients, and I am still doing 3 exercises she gave me, but I have not been able to get up to the city and see her since August. I'm trying to schedule an appt asap in December.

    Before I went back to work, the pain had lessened so that Aleve took care of it; now I'm back to Lortab. Limited movement is also a big problem. The PT in St. Louis is at Wash U, which trades spots with USC as the number one or two PT school in the country. I will share anything I find out from her. I do remember her telling me to "respect the pain" when I did exercises. If it hurts, I don't do it.

    If anyone has ideas on pain management without Lortab, I'd appreciate it.
  • lynn1950
    lynn1950 Member Posts: 2,570
    #6
    Moopy23 said:

    Continued Pain, Yes
    Hi, Lynn, I listened to a radio piece on the article. Joint creakiness and stiffness started for me during chemo. Then, pain in my left arm and shoulder began during radiation. My muscles are trying to "freeze up," I was told. My condition is due to the surgery with lymph node removal and radiation.

    I was seeing a St. Louis PT who specializes in treating bc patients, and I am still doing 3 exercises she gave me, but I have not been able to get up to the city and see her since August. I'm trying to schedule an appt asap in December.

    Before I went back to work, the pain had lessened so that Aleve took care of it; now I'm back to Lortab. Limited movement is also a big problem. The PT in St. Louis is at Wash U, which trades spots with USC as the number one or two PT school in the country. I will share anything I find out from her. I do remember her telling me to "respect the pain" when I did exercises. If it hurts, I don't do it.

    If anyone has ideas on pain management without Lortab, I'd appreciate it.

    Aw, Moopy, you too? I'm
    Aw, Moopy, you too? I'm sorry. I've heard of "frozen shoulder" and I wonder if that has anything to do with muscles freezing up? The pain did seem to be exacerbated by the radiation. Since the pain is worst for me at night, if I can't sleep, I take Xanax. Sweet dreams! I will be really interested in what you learn.
  • carkris
    carkris Member Posts: 4,553 Member
    #7
    lynn1950 said:

    Aw, Moopy, you too? I'm
    Aw, Moopy, you too? I'm sorry. I've heard of "frozen shoulder" and I wonder if that has anything to do with muscles freezing up? The pain did seem to be exacerbated by the radiation. Since the pain is worst for me at night, if I can't sleep, I take Xanax. Sweet dreams! I will be really interested in what you learn.

    I had pain after radiation
    I had pain after radiation ,i had radiation a year after my surgery. this was 15 years ago. In the last couple of years I had bad shoulder pain on that side, so i went to my chiropracter and the culprit was scar tissue along the bra line pulling on my shoulder. The massage therapist did deep tisue massage broke up the scar tissue and no more pain. I never thought it would be that. but I had full chest radiation, an expander removed prior.
  • lynn1950
    lynn1950 Member Posts: 2,570
    #8
    carkris said:

    I had pain after radiation
    I had pain after radiation ,i had radiation a year after my surgery. this was 15 years ago. In the last couple of years I had bad shoulder pain on that side, so i went to my chiropracter and the culprit was scar tissue along the bra line pulling on my shoulder. The massage therapist did deep tisue massage broke up the scar tissue and no more pain. I never thought it would be that. but I had full chest radiation, an expander removed prior.

    Carkris
    How many sessions of massage did it take? I am tight across the chest and it could be due to (at least partially) scar tissue. Thanks for chiming in!
  • carkris
    carkris Member Posts: 4,553 Member
    #9
    lynn1950 said:

    Carkris
    How many sessions of massage did it take? I am tight across the chest and it could be due to (at least partially) scar tissue. Thanks for chiming in!

    Hard to remember but prob
    Hard to remember but prob 3-4 it was not light massage I could feel the pop. could have been called tissue release. I had it on my back and side not on the front
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #10
    lynn1950 said:

    Aw, Moopy, you too? I'm
    Aw, Moopy, you too? I'm sorry. I've heard of "frozen shoulder" and I wonder if that has anything to do with muscles freezing up? The pain did seem to be exacerbated by the radiation. Since the pain is worst for me at night, if I can't sleep, I take Xanax. Sweet dreams! I will be really interested in what you learn.

    Carkris and Lynn
    Thank you, Lynn. And Carkris--my thanks to you as well. I will ask about chiropractic care. That massage treatment makes sense.

    Yeah, frozen shoulder is what I'm getting. I wasn't having pain until rads. My PT said doctors are not able to predict which bc patients will develop the condition. But it has to be treated because neighboring muscles can start freezing up, til your entire side is affected.

    I would have seen Renee, the PT, each month but was in a job situation where I could not be off work for 90 days. I'll report back as soon as I can get in to see her. (Interestingly, I saw the lymphedema specialist at the clinic once when Renee was out of town. I developed more pain from the exercises that PT gave me, and Renee told me--ever so tactfully--not to do them anymore.)

    By the way, Lynn, have you tried resting your arm on a pillow, keeping the arm and shoulder level? The PT suggested this to me. I try, but sharing the bed with 3 dogs and Aortus does not leave lots of pillow space!

    Well, it's bedtime for me. I'm going to take Lynn's advice and use my Xanax. My best to you both.
  • lynn1950
    lynn1950 Member Posts: 2,570
    #11
    Moopy23 said:

    Carkris and Lynn
    Thank you, Lynn. And Carkris--my thanks to you as well. I will ask about chiropractic care. That massage treatment makes sense.

    Yeah, frozen shoulder is what I'm getting. I wasn't having pain until rads. My PT said doctors are not able to predict which bc patients will develop the condition. But it has to be treated because neighboring muscles can start freezing up, til your entire side is affected.

    I would have seen Renee, the PT, each month but was in a job situation where I could not be off work for 90 days. I'll report back as soon as I can get in to see her. (Interestingly, I saw the lymphedema specialist at the clinic once when Renee was out of town. I developed more pain from the exercises that PT gave me, and Renee told me--ever so tactfully--not to do them anymore.)

    By the way, Lynn, have you tried resting your arm on a pillow, keeping the arm and shoulder level? The PT suggested this to me. I try, but sharing the bed with 3 dogs and Aortus does not leave lots of pillow space!

    Well, it's bedtime for me. I'm going to take Lynn's advice and use my Xanax. My best to you both.

    Moopy, Thanks for the pillow
    Moopy, Thanks for the pillow advice. We do have lots of pillows. Sounds like you need a king size bed! Our dogs sleep with our kids, so we do get the bed to ourselves.

    And Carkris, 3 or 4 sessions sounds easy! How spread apart were the treatments and how long did each one take?


    xoxoxxo Lynn
  • creampuff91344
    creampuff91344 Member Posts: 988
    #12
    lynn1950 said:

    Moopy, Thanks for the pillow
    Moopy, Thanks for the pillow advice. We do have lots of pillows. Sounds like you need a king size bed! Our dogs sleep with our kids, so we do get the bed to ourselves.

    And Carkris, 3 or 4 sessions sounds easy! How spread apart were the treatments and how long did each one take?


    xoxoxxo Lynn

    Pain
    Lynn, the pain you have described is exactly what I was experiencing before finally seeking help from an orthopedic surgeon. I did have PT for about three weeks prior to seeking the help of a surgeon, and he decided PT just wasn't enough. Since my surgery in April 2008 (we are on the same time frame), it seems that the pain has been continual, although it does move around. Some days I will have pain in my arm, some times my abdominal area, and some times in the neck. The ortho said that the oncologist seem to encourage you to take high levels of Calcium and Vitamin D3, both of which contribute to a buildup of calcium in your bones. Mine resulted in the formation of a bone spur in the shoulder of the side affected by bc. I would assume that these high calcium levels will be somethng we all will need to keep up as a result of taking hormone theraphy. It is all a round robin....take calcium to make your bones stronger, and then develop bone spurs from the over abundance of calcium in your system. Exercise does help, and I am still in PT following surgery. You wonder if it will ever end, but you also have to trust your doctors to know what is best for you. Good luck to you in finding what makes you feel good. I am trying to ween myself away from Hydrocodone following surgery, and find that heat on the area helps quite a bit. Let us know how things progress as you try to find what makes you feel good. Hugs.

    Judy

    P.S. As Moopy says, the pillows do help to sleep at night. I keep one about the level of my abdomen and lefel with my arm so that it is out straight from my body rather than sloping downward. It does help.
  • lynn1950
    lynn1950 Member Posts: 2,570
    #13
    creampuff91344 said:

    Pain
    Lynn, the pain you have described is exactly what I was experiencing before finally seeking help from an orthopedic surgeon. I did have PT for about three weeks prior to seeking the help of a surgeon, and he decided PT just wasn't enough. Since my surgery in April 2008 (we are on the same time frame), it seems that the pain has been continual, although it does move around. Some days I will have pain in my arm, some times my abdominal area, and some times in the neck. The ortho said that the oncologist seem to encourage you to take high levels of Calcium and Vitamin D3, both of which contribute to a buildup of calcium in your bones. Mine resulted in the formation of a bone spur in the shoulder of the side affected by bc. I would assume that these high calcium levels will be somethng we all will need to keep up as a result of taking hormone theraphy. It is all a round robin....take calcium to make your bones stronger, and then develop bone spurs from the over abundance of calcium in your system. Exercise does help, and I am still in PT following surgery. You wonder if it will ever end, but you also have to trust your doctors to know what is best for you. Good luck to you in finding what makes you feel good. I am trying to ween myself away from Hydrocodone following surgery, and find that heat on the area helps quite a bit. Let us know how things progress as you try to find what makes you feel good. Hugs.

    Judy

    P.S. As Moopy says, the pillows do help to sleep at night. I keep one about the level of my abdomen and lefel with my arm so that it is out straight from my body rather than sloping downward. It does help.

    Thanks, Judy. I had my one
    Thanks, Judy. I had my one year check up today! It's been one and half years since diagnosis. I learned today that scar tissues continue to form for a year after radiation. That's why it continued to worsen after treatment was finished. My radiation onc said today that it shouldn't get any worse. She asked me if I wanted to try PT again. I spent SO MUCH time with PT in May, it makes me queasy just to think about it. I've decided to try 4 sessions of deep tissue massage first, and then go from there.

    I tried the pillow last night (thanks, Moopy and you, too Judy) and it did help ease the pain.

    It really helps to feel not so all alone and neurotic to know that others are sharing the experience (though I certainly don't wish it on you!). I wish someone would have told me about the scar tissue formation; I would not have gotten so discouraged with the PT last spring.

    Happy Thanksgiving, dear sisters.


    xoxoxoxo Lynn
  • one_happy_island
    one_happy_island Member Posts: 5 Member
    #14
    https://csn.cancer.org/discussion/comment/742797#Comment_742797

    10 years out and terrible chemo-induced neuropathy has been diagnosed and although gabapentin works for some or tramadol....I have tried everything short of a spinal cord stimulator. I have a history of frequent falls following chemo due to CIPN, and all the drugs and therapies and modifications to my life leave me with chronic pain that YES, wears me down!! I feel sometimes it has broken my spirit but I rally. I used to be able to change that hopeless feeling with, "well at least I don't have cancer!" but even that doesn't work after 10 years of daily pain. All my friends (and there are too many) who have had BC, no longer have the neuropathy. I guess my case is not "typical" but I can tell you, it goes on and on....I pray yours diminishes with time.a (((hugs)))

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