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Neck and shoulder pain - feeling so dejected

jules72
jules72 Member Posts: 13
edited October 2020 in Pain

hi all,

I'm a year and 4 months out from a single mastectomy on my right side. I had reconstruction just over a year ago. last may I started getting bad pain in my shoulder and neck area. Since then I've had flare ups about every two weeks and sometimes weekly. I've tried everything from massage, physical therapy, meds, heat, ice you name it. Today I stayed home from work (again) because it's just so bad and gives me headaches too. Every now and then my collar bone hurts so I start thinking bone mets which I understand can "come and go" at first. Would they only come and go once a week or once every 2 weeks? Is this common? My PT and massage people tell me my neck and upper back are really tight whenever I go. It comes on so suddenly and lasts about a day and then disappears until a week or so later. When I have it though it's so bad. I've even thrown up from it. Just doesn't feel like I'll ever get better and I don't know what to do. I had dcis and a mastectomy. No lymph node removal, no radiation, no chemo. Anyone else have this? Anything that works to resolve it?

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Comments

  • jules72
    jules72 Member Posts: 13
    edited January 2017

    Cananyone recommend a more active discussion group than this one?

  • Lafish
    Lafish Member Posts: 32
    edited January 2017

    Hi Jules72, I am more than 4 years post mastectomy and continue to require monthly pt maintenance for shoulder and neck pain, lower back and hips as well but i can attribute that to osteoarthritis. For me I know that I carry myself differently meaning that my posture continually needs correcting and stress is a big factor. Physio and being aware of sitting and standing properly does help. Hope things improve for you soon.

    LAF

  • jules72
    jules72 Member Posts: 13
    edited January 2017

    Thank you so much for responding. It helps to know I'm not alone. Mine flares up about once a week or once every two weeks, then it's pretty much fine the other days. I'd assume it it was bone mets it wouldn't come and go like that

  • kiks1
    kiks1 Member Posts: 118
    edited January 2017

    Jules, I am so sorry you have not gotten a response. I had gotten a bmx about a year ago and had gotten intermitten neck and shoulder pains. AND, like yours, it does cause migraines for me at times. I was thinking of posting here as well but just never got around to doing it. My headaches are sporadic mostly when I am stress or if I didn't get enough sleep. However, when it acts up, it feels like it is caused by the pulling and pain from my neck. My collarbone aches sometimes as well. The thought of bone mets has crossed my mind but I was dealing with so many other scares that I have not addressed this issue in depth.I had the pains since bmx but it has not gotten worse. I mentioned it to MO a few months ago and she thinks it is due to posture changes resulting from bmx. I am also on aromasin and I wonder if it is not somewhat related as well. Have you mentioned it to MO?

  • jules72
    jules72 Member Posts: 13
    edited January 2017

    Thanks for responding! Yes I mentioned it to my primary doc last may and we could tell at that time it was a muscular issue so she sent me to PT. PT helped it get a bit better for awhile, less time between episodes, not as severe, and it moved up my back a bit so not as large of an area. Since I stopped PT it is getting worse again. We also tried some dry needling to release those muscles. The PT could tell my back muscles were really tight and the neck muscles were carrying the load versus my proper back muscles. I'm doing my exercises religiously now so we'll see if it helps. It's just disheartening when I have an episode, I usually have to miss work with them. I almost think the scar tissue is healing incorrectly, it flares up, I use massage or the theracane to break it back down, and it builds back up and causes pain again in a vicious cycle, but I don't know...

  • Peppy321
    Peppy321 Member Posts: 6
    edited January 2017

    Hi I had a lumpectomy just 19 days ago and have different pain issues. Before my operation I was a Fitness instructor for Prime Movers teaching Seniors from 50 to 97. Have you ever had time to put on your favorite music and just relax and move to it? I had neck pain day and night for nearly 5 years till I learned some simple and fun exercises. So sorry to hear about your pain. I need to get better pain management for my sensitive areas at the moment. XOX 😋

  • Peppy321
    Peppy321 Member Posts: 6
    edited January 2017

    Hi so sorry to hear your painful news. Wish I could suggest something positive and effective. Moving and dancing to happy favorite music is the only thing that relaxes my neck and shoulders where we keep all our stress and tension. You are in my thoughts and prayers. XOX

  • Sanai
    Sanai Member Posts: 2
    edited January 2017

    Hi! I'm also having neck and shoulder pain since Nov 2016. I had to go back to my chiropractor last December.He did adjustments on my neck and it really helped.I had massage afterwards.I did these 2x a week for 3 weeks. Right now, the pain lessened but I'm still worried that it's something else.

  • Sanai
    Sanai Member Posts: 2
    edited January 2017

    Hi! I'm also having neck and shoulder pain since Nov 2016. I had to go back to my chiropractor last December.He did adjustments on my neck and it really helped.I had massage afterwards.I did these 2x a week for 3 weeks. Right now, the pain lessened but I'm still worried that it's something else.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2017

    we have had a few frozen shoulder threads....but they haven't been active for a while. I had horrific shoulder pain...I strongly recommend an orthopedic appointment.... ladies....i feel your pain and the mental misery that you go through worrying if it is caused by mets....rest assured...for many of us breast cancer and most pain issues are treatable. Talk to your team and don't let that pain continue to interfere with your recovery! Good luck

  • Falconer
    Falconer Member Posts: 801
    edited January 2017

    Hi- I'm in the same boat! After my MX in August, I begged my surgeons to set me up with PT. The pain runs up my shoulder and into my ear. Physical therapy was ok, but most recently, now that rads are done, I tried acupuncture and cupping, and afterwards felt great! I'll definitely be returning for that treatment. Check your insurance it may be covered.

  • minustwo
    minustwo Member Posts: 13,070
    edited January 2017

    My RO is the only one who listens when I say "help - pain". It's been 2 years since RADS and I was released from her care. Never the less, I have been having pain and sent her a message to approve some more PT treatments & an LE evaluation. She said yes, but she wants to see me first - just because she cares. Hope you can find a doc that will listen.

  • bluekoala
    bluekoala Member Posts: 73
    edited April 2017

    I have been having horrendous neck and shoulder pain since surgery (7 months ago). It improved a bit, but then got really bad when I started wearing a silicon prosthesis.

    I've been working with a physio for about two months and I'm not sure it is getting any better, just the pain is moving around.

    My husband has been massaging some of the knots out every few days but they just keep coming back.

    I spend half my day with a heat pack on my shoulders.

    Even though I am sure that it is entirely muscular, there is that fear in the back of my head that my spine is full of cancer. Also is the fear that even if it is muscular it will never get better and I will be in pain for the rest of my life.

    I have another session with the physio this week, and if she can't help me I might have to try something else but I don't know what

  • jules72
    jules72 Member Posts: 13
    edited April 2017

    my symptoms sound almost as exact with it moving around and the knots. I started intense physical therapy in January and just finished in March and I'm finally feeling better. It took several weeks for my headaches to dissipate and a good 3 months until I got it under control. I do I's Y's and T's exercises on an exercise ball every morning and night religiously it's 10 each and then one set of band exercises. My PT did some light massaging and some dry needling -highly recommend dry needling twice a week for awhile then weekly. I also worked religiously on my posture at all times. Chin tucked down, stretch neck and head up like there's a string to the ceiling. Shoulders down and back and keep holding it there often during the day. Feels great to fix my posture. While I always wanted to work on getting the knots out because it felt good for the moment it just irritated it more and stretched the muscles that were already stretched forward. I still sometimes feel it's crunchy back there but not if I perfect my posture. Now if I have minor flare ups the exercises help a ton and posture correction. I feel human again but it was a good 3 months of continuous work. Keep at it and it will get better. Know you're not alone and it is muscular.

  • bluekoala
    bluekoala Member Posts: 73
    edited April 2017

    thanks Jules. I will keep persisting.


  • Why2015
    Why2015 Member Posts: 14
    edited September 2017

    Hi,

    Sorry to hear you have been having pain. I have had neck pain and now have been diagnosed with a frozen shoulder. The pain is horrendous and I can't lift my arm or stretch it without experiencing severe pain. The PA indicated it's a result of breast cancer, surgery, and radiation. This damn cancer is the diagnosis that just keeps giving. I've had lymphedema and cording. Quality of life has gone from 9 to 3. I don't sleep nights, and I still have to work having a 12-hour day as a result of my commute back-and-forth. I am on tamoxifen which is giving me a big fat stomach and prevents me from sleeping. I'm so disgusted I could just break down and cry so fucking discouraged.

  • Why2015
    Why2015 Member Posts: 14
    edited September 2017

    Sorry for your pain. I truly understand how to dejected you must feel. Take care of yourself and just take it minute by minute hour by hour, and the days will pass and hopefully you'll get your mobility back. This is the sisterhood I would never have wanted to be part of if given the choice

  • Falconer
    Falconer Member Posts: 801
    edited September 2017
    Jules, what is dry needling?
  • jules72
    jules72 Member Posts: 13
    edited September 2017

    Dry needling uses needles that are similar to acupuncture but they go directly into a muscle and are moved around a bit with the goal of getting that muscle to immediately release. Your body then learns what it is supposed to feel like to not have that tight muscle. It's worked really really well for me when paird with regular PT exercises. My PT specializes in dry needling. I made a lot of progress with these two things and I've recently added some chiropractic to help get me back to normal hopefully.

  • Falconer
    Falconer Member Posts: 801
    edited September 2017

    Hope that you find relief, Jules

  • jagT
    jagT Member Posts: 2
    edited September 2017

    is it normal to have pain in shoulder and spinal cord with breast cancer

    As I never had breast pain but got doangoned eoth breast cancer . Now waiting for bone scan

    Any help plz ????

  • Falconer
    Falconer Member Posts: 801
    edited September 2017
    Jagt, I too am awaiting results of bone scan. Keeping fingers crossed for you and me both. I'm not sure of your diagnosis and what type of surgeries if any, you've had. If you add them to your signature that'll help others understand your situation. You asked if it's normal? Not sure what is "normal" anymore; it is normal that your doctor follow up on pain your experiencing and good that he or she is proactive about it. Keep us posted when you get results.
  • marijen
    marijen Member Posts: 2,181
    edited September 2017

    Maybe you have cervical disc disease. You can look it up. It' degeneration of the discs in your neck, the shoulders could be referred pain. Just a guess.

    Go to www.spine-health.com

  • Falconer
    Falconer Member Posts: 801
    edited September 2017

    marijen,

    Thanks. The scan was clear except for the hemangioma. I do have a fair amount of arthritis in my cervical spine so referred pain sounds right. How do you get relief from the pain?

  • marijen
    marijen Member Posts: 2,181
    edited September 2017

    I just started taking chondroitan gluclosemine MSM, tart cherry supplements, tylenol and a muscle relaxer. I'm looking for other things I can do that helps joint pain. I was recently diagnosed with arthritis in my knees and hip but I think it's everywhere. I read decreased estrogen makes it worse - at Public Med. My neck and shoulders hurt too, plus wrists, ankles, feet, fingers Is a bone scan the same as a bone density scan?

  • marijen
    marijen Member Posts: 2,181
    edited September 2017

    Falconer, do you get arthritis flare-ups. The last couple weeks have been really hard for me. My PT suggested it could be flare ups. I don't know that much about it

  • Falconer
    Falconer Member Posts: 801
    edited September 2017
    No a bone density test measures just that. A bone scan is a nuclear test where a small amount of radiation is injected into your bloodstream. On the scan dark spots appear as places where the uptake indicates injury the the bone, so a fracture or a tumor can be detected.

    I was taking chondroitin/ glucosamine but I'm not sure it was helpful. I also have a supplement w cucurmin, turmeric etc. you're right about the flare up. I do seem to feel worse in high humidity. And that's been the last week. Ugh.

    Hope you're able to get relief soon!
  • marijen
    marijen Member Posts: 2,181
    edited September 2017

    What about CT scan with the IV dye? It comes back with no sign of mets? Is that the same thing as bone scan

  • jagT
    jagT Member Posts: 2
    edited September 2017

    they want to remove whole breast as it's Tumor 3 n

    Estrogen related

  • marijen
    marijen Member Posts: 2,181
    edited September 2017

    jagT first you should fill out your profile. Thentry the mastectomy site or the site that fits your dx. Look to the left side down at the bottom, you will find the jump to forum. Scroll down, find the forum that most fits your needs, hit go.