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Tamoxifen and Fibromyalgia
I had stage 1 estrogen driven breast cancer - surgery in summer 2022, radiation in fall 2022. Cancer free now. I've had severe fibromyalgia for the past 25 years (currently 54). I am now on Tamoxifen to block estrogen and reoccurrence of the cancer, and my fibro is worse than ever. I have tried absolutely everything over the years (chiropractor, pain meds, acupuncture, medicinal marijuana, massage - you name it, I've tried it), but since the cancer event, nothing is improving. I can hardly work, be active, etc. There must be a connection between lack of estrogen in body and fibro symptoms or cancer events triggering severe fibro symptoms. Who else has been down this road? What have you tried and what worked/didn't? I'm desperate. Thanks for your time!
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I started on Letrozole, which crippled me after two months, then was put on Exemestane, which almost finished me, took a 3-month break with little improvement. I have been on Tamoxifen for 4 months now, and my fibro is through the roof. I have pain in all my joints and bones, muscles and tendons. Life has become hard with just crumbs of joy now and then when I take more anti-inflammatory drugs than prescribed. Both my oncologist and my GP tell me that Tamoxifen shouldn't give me such painful symptoms. They have no idea how it affects fibro, which is depressing. Don't know where to turn. Before the mastectomy, my oncologist asked my rheumatologist to check I was fit for such a big surgery in September 2024, so she did all the usual tests, checking markers, etc., and they were all low. I had been seeing her for joint pain 10 years earlier, so she was still in my medical records. Fast-forward to February 2026, and I had such unbearable pain in my spine that my oncologist ordered a full-body bone scan, worried the cancer had spread to my bones. Luckily, there were no tumours detected; however, it showed arthritis in most of my joints and lower and upper spine and neck, shoulders, elbows, wrists, thumbs, clavicles, hips, and toes. My oncologist said 'you've got a bit of arthritic uptake in the back, shoulder and wrist but offered no solution other than to stay on Tamoxifen to reduce my chances of the cancer coming back. My GP offered no solution either. I asked her for a referral to my rheumatologist and to an osteopath, as in addition, I have spontaneous fractures to three vertebrae and a slight scoliosis. I am being proactive, trying to find solutions, as my life otherwise, as it is, with all the pain and not being able to have a social life or work, barely able to look after my home and my pets, is not worth it. My doctors, on the other hand, are lame, lazy, not interested, and just want to move on to the next patient. It's going to be hard paying for the specialist's appointments, but I don't know what else to do. Just typing this long message will leave me in pain from my shoulders to my fingers and hips from sitting in one position for a relatively short time. Has anyone had a similar situation where blood tests come back clear of arthritis markers, then just a few months later, they are riddled with arthritis? I knew for a long time about my fibro. Are the hormone blockers to blame? It seems that way, but why do doctors play it down?