Post mastectomy pain syndrome

How awful. You've been suffering for a year and no one can help you. Terrible. If I were you, I'd find a new doctor and get a referral to someone trained in myofacial release therapy. It's worked wonders for others with your problems. You can Google it to find someone in your area. Also look up Post Mastectomy Pain Syndrome. A significant number of women have it, so you are not alone. There are pain clinics that are trained in relieving that kind of pain. Another option to look into acupuncture. I've had it and it truly does work. You can get other opinions on one of my other discussion boards - www.breastcancer.org.

Hi there, I am new to this site and have posted maybe a few times. After reading this thread, I am nervous about having the bilateral mastectomy and the after affects that it can cause. Am I most likely to have this? I also have fibromyalgia. I have DCSI and because it is a secondary cancer due to radiation treatments, it needs to be done. Any tips on what to prepare for? Does anyone have body pillows? What should I have on hand for recovery?
Thanks

I am so glad to read these posts. Every one of them describes my experience. I had a double mastectomy with reconstruction in 2011 and did not know what to expect. Knowing what I know now I WOULD NEVER HAVE HAD IT! My cancer was trivial (in one breast) and non-existent in the other (but they didn't tell me that at the time. I complained of TERRIBLE pain from the moment I woke up from the anesthetic but my concerns were dismissed, by the surgeon and then by the plastic surgeon. For the year and a half it took to accomplish the reconstruction (implants) the pain got worse and worse. I had changed plastic surgeons by then and the second plastic surgeon ALSO told me, "Oh the pain is only your body getting used to the implants." By the time I was ready to rip them out of my body with my bare hands, I called the second plastic surgeon for an appointment to remove them. He was on a vacation. I wanted them out right away so I found YET ANOTHER plastic surgeon. He examined me, told me he could remove them but unfortunately it would not eliminate all the pain (I had some pain from swelling). He told me that most of the pain was nerve pain caused by post mastectomy pain syndrome and should have been treated right away. Just to make sure of his diagnosis, after he removed the implants and I had healed, he sent me to a pain management doctor who numbed the nerve that controls that section of the chest. The pain stopped immediately and came right back when the drug wore off. I hate to tell you but the pain has gotten worse over time. My pain feels like constant electric shock across my chest plus a sensation like a metal band cutting into my chest from armpit to armpit. This never stops - all day and all night. Nothing touches it - not pain pills, nothing. I take a beta blocker, a calcium channel blocker and an anti-seizure drug for other health problems and they do nothing for this - it is monster pain. Add to that the fact that I cannot wear any kind of breast prosthesis - I can barely stand for a shirt to touch my chest. Sympathies to every woman on this forum. PMPS is the secret in breast cancer treatment - I have NEVER heard anyone speak of it.