Dealing with Fibromyalgia pain after breast cancer surgery

Posted by sue417 @sue417, Dec 17, 2023

Hi
I had surgery December 15th for In situ breast cancer.
My fibromyalgia pain is off the chart in my neck , whole back, thighs. It's insane . I feel like I have whiplash again. Everyday seems to be getting worse. My fibro is usually under control with supplements which I had to go off for 2 wks prior to surgery. Anyone have experience with this?

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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.

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Hi
Wondering if anyone on here that had surgery for dcis breast cancer had fibromyalgia I just had to have my second surgery in 8 weeks on my fibro is off the chart in my legs I wasn't like this the first surgery very frustrating.

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@sue417

Hi
Wondering if anyone on here that had surgery for dcis breast cancer had fibromyalgia I just had to have my second surgery in 8 weeks on my fibro is off the chart in my legs I wasn't like this the first surgery very frustrating.

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Hi Sue, in addition to the helpful post you received from @heather626, I'm tagging other breast cancer members who have had surgery and live with fibromyalgia, like @jpfefferdittes @butterflylan17 @kathyomaha55@spanning @cerwin @elizm @kensiejames and @nanahatton65. They can share their surgery recovery experiences and share tips.

I'm sorry to hear that this second surgery is proving to be harder to recover from than the first and causing additional fibro flare. Can you share more about what is going on with your legs? What have you tried so far to reduce the flare?

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@colleenyoung

Hi Sue, in addition to the helpful post you received from @heather626, I'm tagging other breast cancer members who have had surgery and live with fibromyalgia, like @jpfefferdittes @butterflylan17 @kathyomaha55@spanning @cerwin @elizm @kensiejames and @nanahatton65. They can share their surgery recovery experiences and share tips.

I'm sorry to hear that this second surgery is proving to be harder to recover from than the first and causing additional fibro flare. Can you share more about what is going on with your legs? What have you tried so far to reduce the flare?

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Dear sue-417
As noted previously, I have been taking Palmitoylethanolamide (PEA) since 2018 for chemo-induced peripheral neuropathy as I cannot tolerate the pharmaceuticals recommended for it. I also subsequently learned that it is effective for fibromyalgia. Here is a National Institutes of Health article which may be of interest to you:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676767/
I highly recommend your consideration of micronized PEA which I buy on Amazon.

Best of luck on your recovery and blessings for your struggles. -- Liz

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@colleenyoung

Hi Sue, in addition to the helpful post you received from @heather626, I'm tagging other breast cancer members who have had surgery and live with fibromyalgia, like @jpfefferdittes @butterflylan17 @kathyomaha55@spanning @cerwin @elizm @kensiejames and @nanahatton65. They can share their surgery recovery experiences and share tips.

I'm sorry to hear that this second surgery is proving to be harder to recover from than the first and causing additional fibro flare. Can you share more about what is going on with your legs? What have you tried so far to reduce the flare?

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Hi
There's not much I can do but take my muscle relaxer at night take my Tylenol in the day and rest

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@elizm

Dear sue-417
As noted previously, I have been taking Palmitoylethanolamide (PEA) since 2018 for chemo-induced peripheral neuropathy as I cannot tolerate the pharmaceuticals recommended for it. I also subsequently learned that it is effective for fibromyalgia. Here is a National Institutes of Health article which may be of interest to you:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676767/
I highly recommend your consideration of micronized PEA which I buy on Amazon.

Best of luck on your recovery and blessings for your struggles. -- Liz

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Hi
It's not pain that I feel it's like someone beat my legs with a bat and muscle fatigue I normally control my fibro very well and don't take any prescription drugs except the muscle relaxer and I do take CBD oil which I have been off so I may go back on is this product you're talking about a drug or a supplement

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@elizm

Dear sue-417
As noted previously, I have been taking Palmitoylethanolamide (PEA) since 2018 for chemo-induced peripheral neuropathy as I cannot tolerate the pharmaceuticals recommended for it. I also subsequently learned that it is effective for fibromyalgia. Here is a National Institutes of Health article which may be of interest to you:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676767/
I highly recommend your consideration of micronized PEA which I buy on Amazon.

Best of luck on your recovery and blessings for your struggles. -- Liz

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Hi
I will ask my naturopath doctor about it as I've never heard of it thank you for sharing

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@sue417

Hi
It's not pain that I feel it's like someone beat my legs with a bat and muscle fatigue I normally control my fibro very well and don't take any prescription drugs except the muscle relaxer and I do take CBD oil which I have been off so I may go back on is this product you're talking about a drug or a supplement

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Palmitoylethanolamide is an endogenous (made in your body) fatty acid amide, and lipid modulator. It has no known drug interactions nor adverse effects. Think of it as a supplement.

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@elizm

Palmitoylethanolamide is an endogenous (made in your body) fatty acid amide, and lipid modulator. It has no known drug interactions nor adverse effects. Think of it as a supplement.

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Thks my naturopath responded she did test me on that age said. So when she us back from vacation will go see her. May switch to it.thks

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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! 🙂

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