← Return to Dealing with Fibromyalgia pain after breast cancer surgery

Discussion
Comment receiving replies
@einnoc

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.)

Jump to this post


Replies to "I, too, was diagnosed with fibromyalgia way back in 1997. The diagnosis was secondary to my..."

Hi
Omg that is so sad and frustrating and makes me angry no one listens to women when you go through this. I'm going to ask for a fourth time next week for the oncotype test and ask them why they won't do it and see what they say. But I have made up my mind I'm not taking any medications serms or a eyes I just have too many health issues and 5 mg of tamoxifen what have did to me is not even fathomable. This is day five off of it and my brain still is not back to how it was prior to this drug I can't imagine what people go through on 20 mg and why stay on it when it debilitates your life. It's very frustrating doctors don't listen and take women more seriously