Forum Discussion
Fibromyalgia and Aromatase Inhibitors
Hey Everyone!
I've been on Arimidex for about 14 months now and side effects have been quite debilitating in terms of joint, muscle pain. I came off as recommended for 6 weeks and kept a diary for my Oncologist, I am yet due to see him but the symptoms reduced dramatically. I know there are alot of women who suffer side effects and there are some women who also suffer NONE!
I was diagnosed with Fibromyalgia about 14 years ago, as the years went on I forgot all about it and got on with life, lets face it who has time for it right?? My Medical Team said I suffered so badly through chemo due to Fibromyalgia and that for some reason it affects sufferers badly. I didnt think about it as I said I forgot all about it, it doesnt rule my life and I put up with pain.
The other alarming thing that has come to light is and why I want to share this is, if you have FIBROMYALGIA any Aromatase Inhibitors such as Arimidex actually make the pain worse.
I thought it worth mentioning to anyone else out there who has this and if you are suffering on medication this is most likely why. The answer??? I honestly don't know but will talk to my Oncologist, I know Magnesium is important with Vit D. but since going back on Arimidex the past 2 weeks have been horrific in terms of pain...and finally I worked it out.
Melinda xo
I've been on Arimidex for about 14 months now and side effects have been quite debilitating in terms of joint, muscle pain. I came off as recommended for 6 weeks and kept a diary for my Oncologist, I am yet due to see him but the symptoms reduced dramatically. I know there are alot of women who suffer side effects and there are some women who also suffer NONE!
I was diagnosed with Fibromyalgia about 14 years ago, as the years went on I forgot all about it and got on with life, lets face it who has time for it right?? My Medical Team said I suffered so badly through chemo due to Fibromyalgia and that for some reason it affects sufferers badly. I didnt think about it as I said I forgot all about it, it doesnt rule my life and I put up with pain.
The other alarming thing that has come to light is and why I want to share this is, if you have FIBROMYALGIA any Aromatase Inhibitors such as Arimidex actually make the pain worse.
I thought it worth mentioning to anyone else out there who has this and if you are suffering on medication this is most likely why. The answer??? I honestly don't know but will talk to my Oncologist, I know Magnesium is important with Vit D. but since going back on Arimidex the past 2 weeks have been horrific in terms of pain...and finally I worked it out.
Melinda xo
18 Replies
Sorry that you've had such a crap experience. I have had Fibromyalgia for several years which has worsened over the past 3. I've had spinal decompression surgery when an MRI revealed a pretty disastrous failure in my L3/4 and L4/5. I have struggled with pain and stiffness, but was able to power on with Paracetamol. After being diagnosed with IDC & DCIS in April this year, I was prescribed Letrozole then had a lumpectomy, then a Revision and 5 weeks later a L mastectomy. I have mostly recovered from the surgeries, I really need and want to regain fitness, strength and flexibility, but I sometimes am severely restricted due to joint and muscle pain and stiffness. Oncologist suggested wrapping to Tamoxifen, but I am reluctant to swap one set of side effects for another. The Letrozole was clearly effective in slowing cell growth, seen in post surgical biopsies, so I can tolerate the sweats, dry skin etc. once I have better pain relief, which I'm currently seeking.
After listening to the segment on Fibromyalgia on the recent Health Report on ABC Radio National, I'm reassured that research is being conducted in its cause and treatment, early days yet. At nearly 80, I might not see its development, but actual recognition of the condition is a start.
Gardening ( mostly vegies) is my daily therapy and I plan to be back riding my horse once fibro symptoms are under control. 😁
You've had a tough time of it xx. But don't be afraid of swapping AIs, Meurig ... It was my 3rd one that worked for me (WAY better than the first 2 with less side effects!)
Also, consider raising the possibility of using Medicinal Cannabis Oil (MCO) as treatment for your joint/muscle aches & pains. Ask your Onc about it.
I came from an arthritis background & the AIs made it WAY worse ... I was on MCO for 6 years whilst on AIs. It is a more natural alternative to opioids and more serious pain killers. Just a number of drops under your tongue.
Put 'Cannabis Oil' in the search area, to bring up lots of posts about it.
Take care & all the best xxSorry for my repetitive, rather over explanatory dissertation.
I will go through a process of checking each option for an improved lifestyle and actually get back on my horse.
- @Chabrittson I'm not meant to see my Oncologist til end of May, but I'm going to reschedule. Yes I believe he'll try me on Femara instead..I really hope things are better on that. It took 2 weeks but I noticed a dramatic difference in how I walked and especially getting out of bed in the mornings. So theres no doubt in my mind about Arimidex for me. x
- Oh Melinda,
You certainly have been through a lot.
Have you tried femara instead of Arimidex?
I too have a lot of side effects on Arimidex and my Dr has taken it off me to see if side effects subside. He said if it does, we will try Femara. - Tracey,
I saw my GP today had to get bloods done and I told him how bad my pain is and he said warm water is good for Fibromyalgia and strangely I said AHA!!! is that why I love a hot shower, OMG I stand forever because it really helps!! So thats why flotation tanks must help!!! Melinda xo - Hey Mel,
I hear you loud and clear, as you well know. Keeping a diary is a great idea. I see my oncologist next Wednesday, and will be discussing my options with him the. Have been taking turmeric as a natural anti inflammatory for about 1 week, and there is some difference in pain level, however my pain is still mobile, moving from my right arm to my lower spine to I between my shoulder blades today.
Hoping that you get some answers soon, Trace xxx - Hey Ally Jay, no I haven't heard of it used for Fibromyalgia, Ive heard of it used for other things though. Interesting! Ive heard of flotation tanks help alot though??
- I've got one, but I can't figure out where to put the pads to target a whole leg! Works well on my shoulder though.
- Have any of you fibromyalgia sufferers tried using a TENS machine for pain management? Just curious to know as I know this therapy can help a lot with localised pain in either joints, muscles and tendons?
- @Aine thanks I do too...I really wanted to post for anyone else who suffers the condition too. x M
- Karen, I couldn't work out why the past 10 days the pain has been relentless and it honestly as been since I went back onto Arimidex after 6 weeks break. I'm going to pull my appt with him forward, but I know he'll switch me to something else and I just dont know it will be any better. I'm in a quandry with the meds, I can't take Tamoxifen, because inspite of being on it for 4yrs I had a recurrence, my Surgeon literally threw them in the bin, said cannot take ever again. Once I finished treatment, my Oncologist said he prefers Arimidex to Tamoxifen that he believed I would be better guarded. Who knows...I just laugh now looking forward to being off it all I think and moving on. :) x Melinda
