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Fibromyalgia and AI Treatment
I am wondering if there are others out there going through cancer treatment who previously had been diagnosed with fibromyalgia, and feel like the fibromyalgia is “supercharged” by the treatment. This is my story - for possibly 20 years I’ve had doctors suggest my pain symptoms may be fibromyalgia, but I did not get an actual diagnosis from a rheumatologist until around 2019. But even then, he prescribed a med (that was not especially helpful so I eventually stopped bc the side effects were intense), but gave no further guidance. I’ve never fully “owned” the diagnosis, I guess, because it’s always felt vague.
Fast forward to last June (2024) and I was diagnosed with ++- breast cancer. I’ve mentioned in other threads - I had a lumpectomy in July (three tumors - invasive ductal AND lobular, yay) AND I had 6 lymph nodes involved, so two weeks later they did a full LN dissection (32 removed in all). Radiation followed Nov/Dec, and I’ve been on Letrozole and Verzenio roughly since then. I know the side effects of both can be rough, and they have been - fatigue, brain fog, joint pain, hot flashes, GI problems, dryness, and for me, skin sores. We’ve adjusted dosage and I take a slew of meds to alleviate side effects from the primary meds. But I am just not adjusting and it is getting really hard to function. I especially suffer if I push myself harder than usual (the bar is LOW!) and end up in bed for a day or two, not only sore, but outright sick - nausea and diarrhea. It can days to get back to a manageable state. I do acupuncture which helps a bit, especially to keep joint pain and hot flashes at bay, and I am working with various specialists at Mayo, but they think my symptoms are worse than they would expect given my set of circumstances. I am less looking for answers, but moreso wondering if my previous fibromyalgia diagnosis is complicating things (thanks to a counselor there who keeps leaning on that theory). When I look at ways later-stage fibromyalgia can affect a person, a lot of the symptoms are similar to those while on systemic treatment for hormone-positive breast cancer. So I am wondering if others who have both are experiencing life the same. I will start a fibromyalgia clinic next month, so I hope to learn more and start “owning” it, along with the cancer. I am reluctant to change cancer meds too much because I am really a high risk for recurrence, but I know that could be part of a future solution. Mostly I’d like to hear from others who might experience cancer treatment differently die to fibro flareups igniting in a new ferocious way.
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I wish you didn’t feel that sick. And I am glad you have a supportive counselor. I also did not own my fibromyalgia going back at least as long as you. Mostly because others would say that anyone could have those symptoms so I often questioned myself as to whether it was a real thing. I never got prescribed any of the meds that eventually were approved.
During my cancer treatment, I couldn’t tell what was causing any side effects. I was on AI and Prolia for early stage and both caused similar effects. 2 years ago, I finally went back to a new rheumatologist about osteoarthritis because my meniscus tore. His bio said he treated fibromyalgia. He confirmed that I have it without me realizing that he was checking even though there isn’t truly a real diagnosis and also said that my arthritis was worse than the radiologist described when he looked at my MRI.
He gave me Meloxicam as needed which I will take if I know I am going to have a very physical day. I don’t see a significant difference, it doesn’t do anything for headaches and you can’t take something else if you do have a headache. I also tried Cymbalta because it’s the only medication approved for AI pain and fibromyalgia. It’s an antidepressant/anxiety medicine. I didn’t help the physical symptoms but I think there is a mental component which I am open to. I am on Wellbutrin which helps with motivation and focus.
It’s 8 years later, off the cancer medications for 2 years and I am in the middle of a flare up. The gastric issues keep setting me back, in the mornings, just like when it all started years ago. So I take what I can, self prescribed. I have been doing yoga since the cancer. It helps with mobility and bones and the joint pains. There are gentle practices and ones that you can do in bed. Everything hurts less if I move. (But you can’t be moving all the time!) I am pretty dedicated to it now. I am in a position where I don’t have to push myself and I don’t, if I don’t have to. Unfortunately, 1 year in, I was so exhausted at my son’s wedding. I cried when he said we weren’t scheduled to dance together until 9pm. But I was grateful that I didn’t need chemo, had my hair, and didn’t do much else during the party so that I would be able to dance. I should have asked to be seated during the service because I was in so much pain while standing. I cancel things when I just can’t do it even on vacation. I am trying to find a rheumatologist again now—the other one moved away. Studies are starting to show possible connections between AI and tendon issues. I have had surgeries for that. Everyone has different side effects. My DIL’s mother switched to Tamoxifen because she couldn’t even get her shoes on. Don’t be discouraged. It’s depressing to not have the quality of life that you had before. But remember, the radiation wipes you out too and side effects from everything can continue. But battling the cancer is what’s important. We also have to remember that our bodies are aging anyway while we are being treated so you never know what the cause is! I am 8 years older now. Back to Imodium and Dramamine which helps my brain and dizziness. Don’t take anything without discussing! It’s a journal…
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7 ReactionsI am using an armband with special app to help me pace my energy. I have fibromyalgia and ME/CFS (chronic fatigue syndrome) i thought i was pacing well before (30 yrs experience!) but with the app i learned a lot more about my body, especially since everything is on high alert with the cancer treatments. Now I can avoid the really debilitating symptoms of flares from overdoing.
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3 ReactionsSorry you’re dealing with all of this. It must be tough. I was diagnosed with fibromyalgia 30 years ago along with rheumatoid arthritis and suffered for decades until I learned that diet plays a major role in these conditions. I dramatically changed my eating habits by switching to an anti-inflammatory, plant-based diet, and guess what—all my symptoms disappeared. Yes even the RA as I test for it every year. Since being diagnosed with breast cancer three years ago, I also eliminated sugar, stopped eating processed foods, and cut out alcohol. I believe diet is greatly underestimated by most doctors, but it can significantly help reduce many symptoms. I’m sorry you’re on so much medication, but a major dietary change will help with the fibro and possibly some other symptoms. Yes, it was a challenge to eat this way at first, but now I absolutely love it.
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2 Reactions@rbarber100
I am sorry you have had this fibromialgia and CFS but glad to hear about this issue. My doctors have never mentioned that the CFS could be causing my horrible side effects with Tamoxifen. I have told them during office visit but they never manage to add that to my official health report and I think they (meaning my bc team) should be sure to get that on record. It is frustrating. I had to stop the tamoxifen after taking it 10 weeks. That was in June and I still am having the side effects for some hours daily. That's better than 24/7 as they were for the whole time I took the pill and the several months after taking were still 24/7. I'm frustrated and angry. I have an appointment with my internal medicine doctor Friday and while he's not on the official cancer team I keep him informed. There will be much discussion with him on the subject Friday.
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1 Reaction@luckbme
That sounds very hard. I hope you get some clarity. I don't know for certain there is a connection, but it really only makes sense, if there are triggers that cause flare ups, it seems cancer treatment would be a BIG trigger. I feel like there should be more attention to this possible connection.
@maymore
That is great to hear that diet and exercise have helped you so much. I tried an elimination diet several years ago, with limited results. I know diet and exercise will be part of the solution. It's good to know it helped you completely. I'm not sure that's the case for everyone, but it has to help!
@delfinogn It's certainly a commitment but I'm the kind of person that wants to take as little medication as possible so I remind myself daily why I'm doing this and that helps keep me on the straight and narrow!
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