Dealing with Fibromyalgia pain after breast cancer surgery

So sorry this is happening to you. I think the root cause is having to go off of your supplements. I have Fibro also and all my meds say to not skip and dosage! Of course, you had no choice with surgery. I know when my Fibro flares up really bad, I go to 8 weeks of physical therapy and that really helps. I also do a low impact pilates class taught by an older woman, who does not try to kill us each session, also helps. Any sort of twisting excercise where the top half of the body is twisting one way, and the lower half is twisting the other way, really streches those back muscles and retrains them to relax. I'm not sure what state you are in, but THC gummies help also! I've never done any sort of drugs, alcohol or cigarettes my whole life, but I was in pain like you, so I tried the THC gummies and it really helps. Especially on important days that you want to enjoy, like a wedding or graduation. Good luck with everything. I hope you find some solutions.

When my knee actually blew out (9/15/2022) I quit taking the Anastrozole and stayed off it for 9 full months. We were on our way to Texas (for the winter) then, and, feeling apprehensive about recurrence (since I did not have an oncotype at that point and did not know my "odds," as the Illinois oncologist just flat out refused to order it for me), I decided to pay (out of pocket, $300) for a HerScan test (ultrasound) from a traveling van at a local motel. It showed something that could have been bad beneath the right (lumpectomy) breast and I was advised to get an oncologist immediately. I ended up with Dr. Uyeki at Texas Oncology and, as I have done with all doctors new to my case, I gave him the written account of all of the above to date. It was not a good time to be spending over an hour with a patient, as we had had an ice storm here and all appointments had to be canceled and re-schedued, but Dr Uyeki spent over an hour with me---so late into the evening that he had to show me how to get out of the hospital. I heard him discussing my book-length recitation of the previous year with the Illinois doctors and treatment. (They didn't know I could hear them through the door that was ajar.) They were aghast and appalled at the remarks and the attitude(s) I had experienced, to that point. Dr. Uyeki said, "I'm going to get an oncotype for you. It's illegal to deny a patient access to their tumor." (*Take note). He went to war with the Trinity Health Care System back in Illinois and I finally got the oncotype I had asked for since December 7 of 2021, but I didn't get it until March of 2023, despite constant, persistent, repeated attempts to ask my Illinois doctor to order one, always through the patient portal, since he never showed up for any of my scheduled in-person appointments. This allowed "the minions" as I have called them to say to me in writing, "That is not an appropriate question for the patient portal. You should ask doctor in person when you meet with him," which was a neat way of keeping me coming in as a patient while never meeting or responding to any of my requests or concerns. In fact, when I left (for the last time) in October of 2022, the minions were hassling me about setting up an appointment for when we returned to the Midwest. I explained repeatedly that I would have to wait to make that appointment, because we never know exactly when we are returning in the spring It was a big shock to me to get a phone call here in Texas telling me that I had an April 9, 2023 appointment, when I had specifically said I would NOT be making one until we returned from Texas. Obviously, it was important to keep the source of revenue returning and paying for appointments with Physician's Assistants who ran interference for a doctor who picked and chose which patients he would actually spend any time with. I was not selected for any time or the answering of any of my questions or concerns, because he either didn't care, had decided I was not sick enough in his godlike way, or he didn't like dealing with the pesky woman who asked all the questions. Doctor Uyeki in Texas got me my oncotype and the 29 is not a good score. He has said that I would have had 3 bouts of chemo if I had been his patient at the outset. He has also said that the chemo ship has sailed, but, due to the somewhat high number of my oncotype, he suggested I at least try Tamoxifen. Because I truly think he is a doctor with the right motives and with concern for his patients, I agreed, but only took 10 mg, every other day. That lasted from April 23 to June 23, as I have related, when I was urged to move up to 20 mg. a day because of concerns that the 5 mg. daily I was then taking would not get the job done. Clinical trials did not exist documenting the efficacy of only 5 mg. daily, but they did exist for 20 mg. daily. I did not do well on 20 mg. daily. I had EXTREME fatigue and constant seemingly never-ending UTIs. The joint pain was going to happen with any A.I. pill and two Texas doctors have marveled at the fact that an Illinois group would even put a woman with my well-documented history of joint pain and arthritic issues on the A.I. pills, as I had been in the MOST study for over 20 years. Any of the A.I. pills suggested were bound to inflame my fragile joints and cause pain, which they most certainly did. I did learn one encouraging thing when I changed my Midwestern doctoring to Iowa City and my doctor there said that, until a few years ago, the cut-off for chemo was 30. They lowered it due to the upsurge in young women being diagnosed with b.c. With a score of 29, but a cut-off for chemo of 230, I could be considered more "borderline" for chemotherapy. I am not sorry to have missed out on being bombarded with those toxic substances. As of August 30, 2023, I quit taking all of the adjuvant therapy drugs suggested. My blood work on March 7, 2023 going in to the Tamoxifen experiment, was good. (I had been off all Anastrozole for 9 months and was feeling "normal" again). When I called up in extreme fatigue in late August, more bloodwork was done on August 30th and 10 (ten) things were "off" on the bloodwork taken after I had been on Tamoxifen for 5 months. I had 33 radiation sessions. I am hopeful that it killed any errant cancer cells, and I am trying hard to be vigilant about any recurrence(s). I feel like my old (emphasis on "old") self now and have an appointment on May 1 with Dr. Uyeki before we leave Austin, at which time a new bone scan will be discussed (The Anastrozole caused my bone density to decline from -1.4T to -2.2T where -2.4T is osteoporosis.) Then I will travel back to the Iowa/Illinois Quad Cities. and I will have a May 24th appointment in Iowa City with Dr. Vikas, who will do bloodwork and meet with me. I have had mammograms at 6 month intervals, to date, but am dropping back to an annual mammogram because, as Dr. Uyeki has said, "I'm not so worried about it coming back in your breast. I'm more worried about it going somewhere else," which normally can mean the bones, liver, pancreas, etc. It is worth noting that the kind of tumor I have is noted for going along OK for the 5 years but is more apt to recur late in life. I am almost 79. The question is whether I can sail along feeling fine (as I do now off everything) and make it to the age my mother did (almost 96) before those dormant cells are somehow "triggered" or can science and research come up with a test that will find these dormant cells and ways to eliminate them. (There IS research along these lines going on now.) Since I am pushing 80 hard, my life span years are a big factor in discontinuing. I don't want to spend my final couple decades of life (optimistic look at my life span) sitting in a wheelchair or fighting UTIs brought on by the pills I was told to take to "protect" me. I need protection from the protection. And I need research like this to bear fruit: