1. < Cancer: Managing Symptoms

Tamoxifen and Fibromyalgia

Posted by jpfefferdittes @jpfefferdittes, Jan 7, 2024

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!

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Mentor
Laurie, Volunteer Mentor | @roch | 14 hours ago
In reply to @imjodi "Hi, I'm on this road right now and I am so miserable! I have tried just..." + (show)
@imjodi

Hi, I'm on this road right now and I am so miserable! I have tried just about everything! NOTHING HELPS and Dr's and nurses DON'T understand or "get it!"
I'm in bed crying and searching for anything that will help!
Cannabis does help a little but it's expensive!
The pain and aches and spasms and and and... I just sent a note to my Dr that I need a break from the Letrozole but I know I really shouldn't. HELP!

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@imjodi

Welcome to Connect, many members have had bad experience with Letrozole and other Aromatase Inhibitors (AI). It is always a tough decision when evaluating risk of not taking a medication due to side effects vs the good it does controlling cancer. Your provider might suggest a different AI or advice on medication to help with side effects. Can also ask about risk factors if stop taking. Do not stop taking medication without discussing with your doctor.

Are you taking Letrozole for Breast Cancer? If so, have you looked at Mayo Connects support group for Breast Cancer? AIs are a frequent topic. You might want to start with this discussion: https://connect.mayoclinic.org/discussion/decision-about-letrozole/

REPLY
imjodi | @imjodi | 22 hours ago

Hi, I'm on this road right now and I am so miserable! I have tried just about everything! NOTHING HELPS and Dr's and nurses DON'T understand or "get it!"
I'm in bed crying and searching for anything that will help!
Cannabis does help a little but it's expensive!
The pain and aches and spasms and and and... I just sent a note to my Dr that I need a break from the Letrozole but I know I really shouldn't. HELP!

REPLY
1 reply
sue417 | @sue417 | 1 day ago

Hi
I had dcis hormone pos her 2 neg. Completed treatment radiation 2024 apr. I have fibromyalgia and osteopenia with a fracture in my spine. I decided to forego the AI. Too risky. Tried tamoxifen lasted 2 wks. Maybe you need to reconsult with your drs. Quality of life is important. I st ill have side effects from radiation. They would have been worse on those meds.

REPLY
sharon44r | @sharon44r | 1 day ago
In reply to @brightside21 "Hi, I'm in the same position. I'm worried at the idea of 10yrs on Tamoxifen. I've..." + (show)
@brightside21

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...!!

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I afraid to take tamoxifen since the side affects on older women of uterine cancer and blood clots.. I have osteoporosis, so that’s what they want me to take. Haven’t been mentally ready to experience the side effects since I have so many other issues..

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mhamernel | @mhamernel | 2 days ago

I am on tamoxifen and have fibromyalga too. It has taken years to balance my fibromyalga and my lifestyle,now with tamoxifen I am struggling. I also think there is a link between the estrogen and fibromyalga. Am seeing my specialist tomorrow and hopefully I will get some clarity. I also think the stress levels of diagnosis and treatment are playing a big role in my flare ups.

REPLY
sue417 | @sue417 | Jul 31, 2024
In reply to @brightside21 "Hi, I'm in the same position. I'm worried at the idea of 10yrs on Tamoxifen. I've..." + (show)
@brightside21

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...!!

Jump to this post

Hi
I took tamoxifen for 6 days
The side effects were horrid. So I made a decision for my health and I stopped it. I am not taking any of the AI's. Not worth my health to take a med that does so much damage to your quality of life. I am er/or + her2- stage 0. Both my oncologist are fine with my decision.

REPLY
sue417 | @sue417 | Jun 22, 2024
In reply to @mir123 "I have chronic pain with fibro-like symptoms (but it is not an exact diagnosis for me)...." + (show)
@mir123

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.

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Hi
I only took tamoxifen for 6 days. I have never felt so disgusting in my life I almost blacked out driving. It is two months Since I stopped the tomoxyfin and I still feel Off. 10 wks Since radiation stopped and my fatigue It seems to be Worse ever Day. Very frustrated

REPLY
sue417 | @sue417 | Jun 5, 2024
In reply to @brightside21 "Hi, I'm in the same position. I'm worried at the idea of 10yrs on Tamoxifen. I've..." + (show)
@brightside21

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...!!

Jump to this post

Hi
I tried tamoxifen for 6 days no thanks. Horrid side effects. I have fibro. Osteopenia, compression fracture, heart issues amongst other things. I had stage 0 dcis so my oncologist agreed not worth the risk. If it's diminishing your life why stay on it.stopping estrogen causes serious issues. I don't feel it's a guarantee for me

REPLY
sue417 | @sue417 | Jun 5, 2024

Hi
I tried 5mg Tamoxifan lasted 6 days it was horrid. I can say my fibromyalgia and fatigue have been horrid. I am 8 weeks out since finishing radiation. I have a day I am good if I do my appts and errands the next day I am leveled. Do depressed and frustrated. Since going off my hrt moods menopause is horrid wicked hot flashes sure the fatigue is part of that

REPLY
sue417 | @sue417 | May 18, 2024
In reply to @brightside21 "Hi, I'm in the same position. I'm worried at the idea of 10yrs on Tamoxifen. I've..." + (show)
@brightside21

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...!!

Jump to this post

Hi
I tried the 5 mg of tamoxifen 6 days was all I could tolerate I met with my oncologist this past week and because my side effects were so severe he agreed that I was not the medication I should take. We discussed the AIS but because I have osteopenia already and a fracture in my spine along with other health issues I decided not to take anything. Although my cancer was dcis Erpr positive her to negative stage zero he is fine with me doing nothing and he said if you wanted to try it down the road you can it's totally up to you but I do not want you to suffer daily. To me it's only logical if you take away all the estrogen your body is going to suffer horrendously I cannot understand why after all these years they have come up with something else for breast cancer that is hormone positive

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