Pain in entire body
Hi Friends,
I am 45 and I was diagnosed in 2019 on right side, mastectomy was one and then
implant was placed. I have been taking Tamoxifen since 2019. My Dr explained lot of side effect of Tamoxifen and I am aware of them.
After surgery I was going to lymphoma clinic to drain and then Physio Therapy because I started developing cording on right arm from where lymphnodes are taken out. My nurse told me I started having cording(AWS - Auxiliary Web Syndrome). Later they showed me how to break the cording, even my husband do them for me. I had been doing some starches, exercise to manage the pain and keep mobility as much as possible.
Initial it has started on right arm but after 1 year or so I started having on left arm and it has progressed in all over body. I have done MRI and even lately I have seen rheumatologist and did test and it was clear.
Even after 4 years of surgery and I am still living with pain mostly due to cording. Sometime it will be on legs, on finger, calf, stomach or chest. I am very active women and try to control my weight, do exercise, walking, keep my self busy with kids and family. But this pain drags me and my family behind.
Any one has any similar situation and how did you manage? Any suggestions are appreciated.
Comments
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Cancer meds are harsh and only small percentage of people have no SE. I have suffered from SE of letrozole for almost 3 years and I have tried all, phycial therapy, acupunture, other meds, you name it. The only change that made the big difference is changing the medication. Talk to your doctor if you can have OS and aromasin. It will take weeks to months to feel the diference. Let us know how it goes.
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And yet, given the ongoing minimization of women's symptoms—particularly pain—in healthcare, even in 2023, per the latest research and feminist analysis, the same establishment that browbeats women breast cancer patients into taking these drugs regardless of severity of side effects will deny us any serious regular pain meds, despite evidence that chronic pain patients have been managed well for years on these until the CDC overreached, leading to patients turning to suicide or the streets to address their pain (hence overdoses, since patients could no longer get them safely from drs). The condescension (and affluent myopia) behind suggesting massage, bubble-baths & MBSR classes, which are "faux self-care" tx pretty inaccessible to low-income (predominantly Black) women & women w/ disabilities, as means to treat severe pain, is infuriating. But it's consistent with ongoing sexism in medicine.
Fortunately, I'm finding a growing community of persons seeking a more humane policy to pain treatment. I'm even seeing Stage IV breast cancer patients being denied adequate pain relief. I mean, what's the worst that can happen? You're ALREADY FACING DEATH. In Canada, you get to apply for euthanasia, as of March 2024, if you're "addicted," because why not have the state kill you rather than allow you to manage your own healthcare w/ drugs that pennies on the dollar.
Like, what's the risk of taking low-dose opioids—if they work—to stay on a drug that we're browbeaten into taking because it "saves our lives?" The risk is that we might, um, die? There's actually a small proportion of people who misuse the drugs, but all pain patients have been tarred w/ the same brush. The illogic is women must suffer, suffer, suffer, on cancer tx's to try to prevent recurrence (which still isn't an absolute prevention), but you cannot take something to increase the likelihood of taking that drug because of inflated claims that the treating drug will "kill" you. Of course, that decision is a policy & administrative one, because humane doctors are being hounded by the DEA for appropriately tx their pain patients, and has nothing to do w/ actual health CARE.
I'm very, very sorry—and I hope you can find a palliative pain mgmt unit in your cancer center or get on the long waiting list of pain "management" docs to get tx.0
