Tamoxifen and Fibromyalgia

Posted by jpfefferdittes @jpfefferdittes, Jan 7 2:41pm

I had stage 1 estrogen driven breast cancer - surgery in summer 2022, radiation in fall 2022. Cancer free now. I've had severe fibromyalgia for the past 25 years (currently 54). I am now on Tamoxifen to block estrogen and reoccurrence of the cancer, and my fibro is worse than ever. I have tried absolutely everything over the years (chiropractor, pain meds, acupuncture, medicinal marijuana, massage - you name it, I've tried it), but since the cancer event, nothing is improving. I can hardly work, be active, etc. There must be a connection between lack of estrogen in body and fibro symptoms or cancer events triggering severe fibro symptoms. Who else has been down this road? What have you tried and what worked/didn't? I'm desperate. Thanks for your time!

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

Miriam, Volunteer Mentor | @mir123 | Jan 7 4:27pm

I have chronic pain with fibro-like symptoms (but it is not an exact diagnosis for me). The pain was indeed worse after surgery and radiation. My PCP doubled my pain meds (I do well on these) and I continue with rolphing/PT/micro current twice a week (yes, out of pocket). About 8 months out from treatment, I'm back to "normal." But I have thoughts for you. Will your oncologist allow a tamoxifen "vacation"? That will give you more information about source of fibro increase. In addition, can you switch to a different estrogen suppressing drug? I'm doing well on letrozole (although yes, many women have bad symptoms). You might also discuss dosage--can yours be lowered without ill effect etc. Also, try and get some actual statistics. If tamoxifen lowers recurrence rate just a little you might see if you really think it is worthwhile. Sorry that this advice is work for you, when you least need it, but it is what came to mind. I do think chronic pain made my recovery harder, but at least I expected I wouldn't be "fine" 3 days after lumpectomy! Wishing you some positive change.

sue417 | @sue417 | Jan 7 4:10pm

Hi
I also have fibro. Just had surgery for dcis stage 0 awaiting pathology. May I ask how many radiation treatments? I also have osteopenia with a compression fracture t8. 2022. I believe tamoxifen is the only medication. I will be able to take if I have Estrogen positive. How many mg do you take. I will only take 5mg if they won't agree I am not taking it. Fibro makes me very hyper sensitive to meds.

elizm | @elizm | Jan 7 4:08pm

Dear @jpfefferdittes,
By way of explanation, I acquired severe chemo-induced peripheral neuropathy during and after my BC treatments in 2017... and still suffer from it. The usual treatment for that is similar to treating fibromyalgia (duloxetine, pregabalin, etc.), except that I was unable to tolerate those meds. At first a practitioner of Chinese medicine gave me a wonderful herbal treatment which helped a great deal, but my oncologist noted that it was raising my hemoglobin too high, so I stopped taking it.

In my desperation, I scoured the net and found a forum of European neurologists who stated that they had been giving their CIPN patients something called Palmitoylethanolamide (PEA) which I was able to obtain on Amazon. Within three weeks, I was noticing a great deal of relief. In the meantime, I discovered that several well-known American medical institutions were studying it and finding it promising for some things. Among its great benefits is that it has NO known drug interactions nor adverse effects... and it is something which your body naturally produces.

According to the NIH: "Palmitoylethanolamide (PEA) is an endocannabinoid-like lipid mediator with extensively documented anti-inflammatory, analgesic, antimicrobial, immunomodulatory and neuroprotective effects. It is well tolerated and devoid of side effects in animals and humans. PEA’s actions on multiple molecular targets while modulating multiple inflammatory mediators provide therapeutic benefits in many applications, including immunity, brain health, allergy, pain modulation, joint health, sleep and recovery." You can read more about it at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8157570/

After reading your post, I googled if it was effective for fibromyalgia, and found another NIH article which confirmed that it was: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676767/

Over the past seven years, I have found that none of my physicians were familiar with it, although one of my internists (now retired) started taking it himself with good results. I currently take 1,800mg/a day (one 600mg capsule in the morning, at dinner, and before bedtime) and it has brought me great relief.

If you decide to give it a try, you will wish to look for micronized PEA without any additives (including no vitamins). It is not inexpensive. I currently buy (on Amazon) Gold Health PEA Extra Strength (600mg capsules), 120 capsules/bottle, for $30... less if you Subscribe/Save and which lasts me 40 days.

I wish you well in your pain management journey. - @elizm

Colleen Young, Connect Director | @colleenyoung | Jan 7 3:12pm

Welcome, @jpfefferdittes. I added your question to the Breast Cancer Support Group. , I believe @sue417 @butterflylan17 @buckimom @spanning @cerwin @elizm @gwinter and @trese5524 have fibromyalgia and are or have been taking an aromatase inhibitor or tamoxifen. They may be able to offer tips from their experience.

I can imagine that you are desperate. This sounds debilitating. But you are not alone. Have you ever been to a fibromyalgia specialty clinic?