Dealing with Fibromyalgia pain after breast cancer surgery

Hey! I have hEDS and just dealt w/ surgery for a second primary. This might have something to do with the inflammatory response of the body to surgery. I think it's cytokines? prostaglandins? or something like that which is aggravating pre-existing tenderness.. Fibro, and hEDS, is notoriously sensitive to inflammation.

I also think a factor I've yet to see any researcher discuss is that removing breast tissue may lower the body's estrogen levels in and of itself, in addition to potentially triggering/hastening menopause. Simultaneously, women on HRT are going off of it at point of surgery. This is well before any estrogen blockers. Estrogen itself is tightly coupled w/ tendon/connective tissue health--which a few hundred studies have established through 2023. That's why aches & pains are worse in older women & HRT and sSRI's sometimes help w/ pain. So depending on where you are in that situation, hormones could play a factor.

In fact, after the mastectomy I had in Sept last year, I thought i was developing polyrheumatic athralgia on top of hEDS. It was like I was being randomly stabbed w/ a fork across multiple joints, but for no more than 10-20 secs at a time. It's actually settled down now, even after my tissue expander exchange 2 mos ago, which does make me wonder about whether it's the tissue removal that triggers the estrogen and name-of-inflammatory-circulating-thingie and not the cut into your skin per se.

Finally, very little research is boing done on the demonstrated role that surgery--and multiple surgeries--can play in promoting angiogenesis for wound healing, but thus creating a tumor microenvironment more favorable to recurrence and/or mets. This isn't a matter of a lumpectomy releasing tumor cells, or even sending the cells into the lymphatic system--which are documented risks too . . . But on a deeper level, circulating tumor cells, which are understood now to be common once you've had any invasive tumor, even 2 mm, find it easier to set up shop b/c your body is doing a bunch of stuff to heal that wound. I don't think plastic surgeons are even aware of this when they rush you through planning.

keep us posted! 🙂

Hi
I don't really understand a lot of what you said but thanks for responding

From the article link on contributions of surgery to mets risk, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5380551/

". . . all tissue trauma, including the sterile dissection carried out by surgeons, elicits a cascade of local and systemic cellular and humoral inflammation which has the potential to capture the cancer cell and support its survival and metastatic growth."

These inflammatory cytokines, prostaglandins, and catecholamines can make fibro a lot worse, at least for me. So if it were me, I'd increase as many anti-inflammatories as possible--beyond prescription & OTC ibu, there's quercetin, bromelain, dietary changes, etc. I'm sure your healthcare provider will have the best ideas.

PS: Here's one of many articles discussing the role of increased cytokines in worsening fibromyalgia. Cytokines are increased after surgery to help your body fight off infection.

I, too, was diagnosed with fibromyalgia way back in 1997. The diagnosis was secondary to my participation in the MOST study for people with damaged joints and arthritis and I was in it from 1997 to 2020. I did get a referral to a rheumatologist, but when I went to his office, the other people were so bad, compared to me, that I left feeing foolish about my minor aches and pains, primarily in my neck and back. After my lumpectomy (1/27/2022) I had the worst back pain I've ever experienced in my life (and I had never had really bad back pain until I started taking Anastrozole on Feb. 1, 2022). I was in hell and spent most of my sleepless nights trying various home remedies for pain in my back and muscles and joints, including sleeping on the floor, lying in a hot bathtub (as hot as I could stand), using a massaging instrument we call "the Thumper," and taking Ibuprofen and Meloxicam. Nothing worked, and I began actively searching for my leftover Oxycontin from a root canal, but, when I found it (it was from 2020) it said you couldn't take it with a benzodiazepam and I take 1 mg. of that daily to sleep, so the Oxycontin---the only truly strong pain reliever in my limited arsenal---was a no go. Nobody ever asked how I was doing or seemed to care that the pain I was experiencing at age 76 was the worst pain I had ever had from anything in my entire life, and I've given birth to two children (one a 9 lb. boy) and had 3 major surgeries for other things. I was in hell. When I tried to tell my oncologist about how the pain was a "10" on a 10 point scale and I was also experiencing blurry vision from dry eyes, dry skin, brain fog, teariness, mood swings, and vivid violent nightmares. And then my left knee completely blew out and I had to get injections of an anti-inflammatory (32 ml; 6 ml of Durolane) and was given 15 Tramadol pains (50 mg.) because I could no longer walk at all and was in a wheelchair or hobbling with a cane from September (2022) until March (2023). My Illinois oncologist, rather than discuss alternative methods or adjuvant therapies, simply said, "Don't take it then" and walked out of the examining room. No discussion of maybe moving to Tamoxifen or one of the other A.I. pills. He simply couldn't be bothered seeing me (only 2x in 8 months) and rejected my contention that the Anastrozole he put me on had now contributed to semi-crippling me, saying, "The only side effect from taking Anastrozole is a little stiffness in your hands and fingers in the morning, and it goes away when you quit taking it." (I have that in writing, since he never deigned to actually show up for my appointments, but pawned me off on his P.A.'s and that was written back to me on the patient portal.) Tamoxifen, which I subsequently tried with my Texas doctor, did not cause the same one pain, but gave me extreme exhaustion and non-stop UTIs. I'm off all drugs since August 30th, despite an oncotype score of 29 and a doctor who never bothered to order that for me at the time of surgery. That news came to me after 17 months of asking politely for it, but only after I changed oncologists. My score of 29 (and I had no chemo because it wasn't ordered early) means that I have a 36% chance of a recurrence if I don't take some of the adjuvant therapy pills and an 18% chance of recurrence if I take Tamoxifen for 5 years. Naturally, I am apprehensive, but I was never a good candidate for A.I. pills, given the inflammatory nature of the pills and my over 20 years in a study for people with bad arthritis and damaged joints, and Tamoxifen did not go well, either. I doctor for cancer, Type II diabetes, Fibromyalgia and osteoporosis (which was also brought on by taking Anastrozole.)

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:

Hi
Wow I respect your determination, it just goes to show as women we have to do our homework and be diligent. I wish you well.