Tamoxifen and Fibromyalgia

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?

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

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.

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.

This is a long shot, but have you tried changing the Tamoxifen brand? The pharmacy changed my brand from Actavis to Mayne, and I developed muscle & joint pain as well as severe muscle cramps. Went back to Actavis and pain & cramps cleared up.
While it hasn’t been formally studied, there is a lot of anecdotal evidence that the fillers used can affect the severity of side effects. From my research there are 3 brands - Mayne, Actavis and Teva. While all three have the same amount of Tamoxifen, Actavis and Teva use the same fillers, while Mayne’s fillers are different. Some people do better with Mayne and others are better with Actavis or Teva.
I hope you find some relief.

He intervenido otras veces en esos grupos donde se trata de los calambres a personas operadas de cáncer de mama.No recuerdo cual fue la marca deltamoxifeno que tomaba pero mis calambres iban e aumento y hoy tengo una neuropatía en mmis piernas que me impiden caminar normalmente No domino mis movimientos.Peto no tengo dolor.La neuropatía empezó alrededor de 8 años después.Primero muy suavemente.Hoy camino con bastón trípode .Y no tengo equilibrio
Simo mí comentario a los de las personas operadas de mamá y que tienen ese tipo de secuela

Gracias

Mercedes Carbajal.

There are about 600 publications (400 of which are orig studies) according to a Cochrane Review in 2022? on the relationship between estrogen blockers and joint & muscle pain. Despite dismissal & invalidation by far too many doctors, the effects of estrogen blockage has been demonstrated via MRI & biopsies. MRIs have shown a weakening/thinning of tendon sheath in fingers/thumbs after period of time on meds. (I'm butchering the exact terminology but I know that the effects are statistically significant & repeatable.) I think there's an acronym for it--aromatase inhibitor initiated musculoskeletal syndrome? AAIMS?--or something like that.

Before I was diagnosed with breast cancer, I was diagnosed with fibromyalgia. What I found worked at that time is also helping me now. I get into hot water and do exercises. I used to swim laps in a hot water therapy pool. It made my fibromyalgia symptoms go away completely nearly. I was then diagnosed with IDC Her2+, estrogen+ stage 2a and had TCHP and a mastectomy without reconstruction.
I moved away from the area where that therapy pool is, and bought a house elsewhere in a rural location-no therapy pool nearby. I stopped doing the swimming and the symptoms returned.
Then, I bought an inflatable jacuzzi because I can't afford a pool. The water is kept at 99 degrees and I do exercises in it. The cardio and the hot water combined is what helped me.
If you can't do the hot water part, do the cardio part after you shower to loosen your muscles. Even if you don't do the shower part, the cardio is key. I went for brisk walks when my jacuzzi was broken, and that helped too.
I am now back to doing well with the fibromyalgia part of things, even though I have plenty of other issues including chemo brain and pain in my hands and feet from Tamoxifen. Do know that I am in pretty poor overall health with a heart condition, so I have to push myself to do anything, but this is really helpful, so I do it.
I hope this helps.

Welcome @julieaz. Nice entrance into the discussion to offer helpful tips and hope. You might also be interested in following both the Breast Cancer support group and the Fibromyalgia support group. Here are the links to both:

- Breast Cancer support group https://connect.mayoclinic.org/group/breast-cancer/
- Fibromyalgia support group https://connect.mayoclinic.org/group/fibromyalgia/

FYI: @leculdesac @jpfefferdittes @sue417 @butterflylan17 @buckimom @spanning @cerwin @elizm @gwinter @mecha and @trese5524 did you know there is a new group dedicated to Fibromyalgia on Mayo Clinic Connect now?

Hi, I'm in the same position. I'm worried at the idea of 10yrs on Tamoxifen.
I've had Fibro ,CFS & and migraines for over 25yrs which was helped by HRT. All pre my cancer & treatments.
All HRT was stopped immediately I was diagonosed with Invasive Ductal Cancer (IDC) & was given Tamoxifen as you say keep growth & recurrence at bay. But the downside of Tamoxefen is horrid my quality of life is worsening with increased muscke & joint pain, fatigue & Migraines.
Pre my cancer at menopause I had HRT and as you say the Estrogen was a total GAME CHANGET improving my Fibro joint pain, fatigue. It was noted also my bone density improved & my dexa scans became normal again.
I'm now very worried about long term Tamoxifen.
Are there any reports, trails etc on the affects on Fibro, fatigue, joint pain & Migraines.. etc
Likewise I'd like to hear from others with Fibromyalgia, Me & CFS to see how they are on Tamoxifen.
I'm finding every day a challenge not because of cancer etc...but because of the awful pain & fatigue I'm positive it's worsening with daliy Tamoxifen. But I've no options med wise as the other medications badly affect my bone density so are a no no...!!