I have been in Tamoxifen now for almost 2 years. The first year and a half everything was great. Now I can barely walk and the pain on the bottom of my feet is incapacitating. Getting out of bed takes so much effort, just because putting my feet on the floor is so painful. I finally told my doctor this week and she ordered a bone scan, but now I see my case is not an isolated case. Can anyone tell me if they have found a solution or what have the doctors done for you?
Sorry you're going through this, I very much empathise, I know how hard this is. If you can, I'd say - keep taking some form of treatment as long as you can. An option that was open to me was to have an ovary removal op, which put me into post menopause, and I could then take an aromatase inhibitor drug instead of tamoxifen. It seems to vary from person to person what side effects you have on which drug. I had muscle pain on aromatase inhibitors but some don't experience it as much as I did. After 5 years on Exemestane (an aromatase inhibitor) and then stopping it, my muscles have been better - I still have pain sometimes, and that will partly be due to the fact I'm post menopause and not getting as much estrogen. Although estrogen can cause Breast Cancer it seems to be needed for muscles! My tack now - after stopping Exemestane - is to have a diet high in aromatase inhibitor foods, not to drink alcohol (extremely small amounts occasionally) and not to eat or drink things for the most part which are risky for breast cancer (the website foods for breast cancer can help with this). Hope you can find a way forward that is best, I know sometimes it's just waiting it out for a bit..
I have excruciating pain in the tops of both feet, sometimes it's unbearable and stops me in my tracks. I do go to the gym to keep my heart and lungs healthy but its hard work. My job doesn't help, on my feet for 8 hours + and I too believe this is all since taking tamoxifen.
Just wanted to give an update on foot pain with Exemestane (aromatase inhibitor). Ive been reading everyone's posts and it's so useful to hear that this is a common problem on these meds, and the things that have helped. I've been taking Exemestane now for 5 years, and I think generally although it's a drug you can live through, it does have its difficulties! For me my muscles generally seem more challenged, and in my right foot the muscle that's supposed to lift the foot arch is now very inflamed and a chronic problem, causing pain in my foot and round my ankle. Some heel pain too.. Gabapentin helped, though Ive stopped taking it now. I've been using an anti-inflammatory gel. Sleep is the best healer I've found. There are a lot of anti-inflammatory foods, and some herbal things like devil's claw (ignore the name - it's an anti-inflammatory!). A good website I found to check if foods or supplements are recommended or not for breast cancer is foodforbreastcancer.com - it also lists which foods are aromatase inhibitors (applicable mostly for post menopausal stage), and it includes the scientific studies that have been done around each food or supplement. As I've previously mentioned I took B vitamins, it does give a warning on that website about taking a couple of the B vits as supplements - folic acid among others - it depends what you're taking alongside them sometimes. I found it difficult to hear that some of the things I've been taking for years might have been a problem. But knowledge is power! I've now made some good lifestyle changes to try to lower my breast cancer risk..
Love and courage to everyone on the cancer pathway - it's a difficult one, but there are positives along the way.. xxx
I have been on tamoxifen for 18 mo and started noticing bottom of foot pain which has now progressed to really bad L heel pain in last 4 mo. I am 51, a runner for over 8 years with never, ever anything like this before tamoxifen. It doesn't hurt during runs because I don't heel strike, but walking around all other times, it is intermittent from low grade to O.M.G. I see a physical therapist regularly for self care on running and there is nothing wrong, injury- wise. So, I guess you could say that I finally figured out that it must be the tamoxifen and Googled it--I mean, if a known side effect is bone pain and joint pain, well--here ya go. Lots of women post breast cancer on meds having the same problem. Just saw my onc and she had no idea, but I'm sharing all of this with her now. Thanks so much, everyone, for the validation!
Let’s talk about Letrozole! It’s strange as I have pain in my right foot but not my left, pain in my left hand but not my right!
I’ve been wearing Strive sandals and found they really help my feet, they’re quite pricey but I only buy when a sale is on. I’ve not tried their shoes or slippers (I’m wearing my “Capri” sandal indoors with socks!) but they also do orthotic insoles for normal shoes, which is a cheaper outlay and means I can wear my normal shoes and boots.
I am feeling validated. I also have pain in my left heel after being on Letrozole for 2+ years. I do a lot of hiking (especially during the pandemic), and attributed the pain to hiking. I bought rubber heel inserts for my hiking boots. However, even while at rest, the pain is present. I haven't hiked since Thanksgiving 2021, but the pain is worse now. I have tried Aleve, and I think it helps (some).
Hello again everyone, wanted to update you on things to help with pain in feet and other muscle/nerve pain, side effects of aromatase inhibitors... I've finally found something that works - Gabapentin. It's not something to be taken lightly, but I've found that it even helps at a low dose which could be considered a child's dose, which is great for me as I don't like taking drugs if I can help it. It's also something that can help sleep, but as usual I'm atypical, and it seems to raise my blood pressure a bit if I take too much or later in the day, so doesn't help my sleep. So, the regime that's working is to take about 30mg of Gabapentin (I twist open a 100mg capsule, discard some and then close the capsule again) with breakfast, and then another 40mg early in afternoon. This covers the time I'm working so I can walk better, and leaves enough time before sleep. For me it's a stimulant, so I'm limiting caffeine as well to balance with the Gabapentin- last cup of tea/coffee just after lunch & that also helps sleepwise. I think the Gabapentin is also helping with hot flushes - they're not gone, but seem a bit better. So if your doc thinks it's ok to take Gabapentin in light of other things you're taking / conditions you have etc. might be worth a try... X
Hi Dawn, that's a good thing to know about the B bits. I take them as well - a really good Viridian B complex. I still have the foot pain, and I've got at least another 10 months on the Exestane - I thought it probably wouldn't help switching to another one, as basically it is prob the lack of estrogen causing the problems. So I'm trying to stick it out, but it's very hard and is affecting work. So - the things I've found that help are - more sleep, but keeping moving each day and getting exercise - along with the B vits I take magnesium citrate, Lambert's Magasorb is a good one, I also take high strength glucosamine sulphate - I've found (strangely ?) that eating more fresh fruit & veg can help. Aspirin sometimes makes the pain better, and Vitabiotics jointace gel sometimes helps but not always. The cancer consultant I've just seen said vit D can help but I already take that, and I eat enough calcium which she also said could help. A herbalist might be able to suggest things specifically that can help with nerve pain, I'll be looking into that as well! Hope this is helpful Dawn, I think this is something we need to get through, you have my full sympathy - it really is hard! Hugs...
Did you found anything that has helped? I have just started getting peripheral neuropathy after having no side effects of letrozole for a year. I thought i had been lucky in getting no side effects from the drug, but i the pain in my feet and hands seems to be building. They say it can be due to lack of B vitamins in the body, especially B12, so i am taking them now, but my blood test came back as B12 being ok. I take amitriptyline at night, which does ease the nerve pain so i can sleep, but i am at a loss as what else to try. I feel changing to another type of estrogen blocker wont really help, as its the overall effect of having no estrogen in the body causing the issues, which is what all the estrogen blockers are meant to do.
I'm trying out Ginko Biloba, helps increase blood flow and turmeric for inflammation, I'll report back if they help..
Its so reassuring hearing all that everyone has to say - I thought I was going mad ! I've been shopping for two days, trying to find comfy shoes for a 13 hr shift - I'm a nursing care assistant in a hospital - underneath my feet and arches are agony - Im on anastrozole and Ibandronic acid and didn't know which was causing it. No shoes help - I will go and test another drugs combination - Very Best Wishes. Thanks All. x
Hi All, I came across this blog searching as many of you have for 'arimidex and pain in feet'. I can tell you that pain in joints and feet seem to be the norm here in the US as well. I am sorry all are suffering. I have fibromyalgia and have suffered from intense pain from this illness for many years. May 2018 I was diagnosed with stage 2a HR+/HER- breast cancer. I did the surgery, radiation and now I am 4months into the arimidex (generic anasterole). The pain is insane. Someone mentioned feeling like 90 on here, yes indeed!
Talked to my oncologist and family doc and both of them suggested using Clariton (allergy med) along with the arimidex. For some reason this helps many people with the pain from the arimidex. I use it and do find it helps. I recently saw my podiatrist (sp?) and got a cortiszone shot in my left heel. My left foot is a nightmare at times. Going back to see the podiatrist very soon and see if I can get another shot.
I wish you all the very best in your treatments and your journey!!!
I have experienced pain in my feet as well. It is excruciating at times. I am a housekeeper so it interferes with my job as you can guess.
I've just had my ultrasound and mammogram so I know I am cancer free at this time although I did have breast cancer last year. I tried three different cancer drugs before exemestane. I experienced joint pain with all of them but the pain in the feet is the worst so far.
I have an appointment with my oncologist next Monday so I will relate any information she offers but I am relatively sure that the cancer has not come back into the feet as you thought. It's just a side effect of the drugs we are taking.
Cancer is a scary thing. Don't let it get the better of you, please. Stay strong and fight it with all you can muster which, I agree...at times isn't much. The alternative is unthinkable.
Oh Dear June, what a horrible time you are having.
I really think you need to contact your Oncologist about this, or your BCN, for a professional opinion. What makes you feel the cancer might have spread? It sounds as though you are being monitored so don't frighten yourself with the thought of metastaces when these Aromatase Inhibitors can have dreadful side effects of their own. You could phone your BCN or your Oncologist's secretary and make an appointment to see one or the other as soon as possible as the pain is clearly severely limiting your life.
It's easy to say, I know, but try not to worry; keep telling yourself there will be a solution to this.
I have been taking exemestane for about 2 months after changing from Lesterole because my tumour had doubled in size ,I tolerate the side affects quite well except for odd days when they overwhelm me .
my biggest problem is the agonising pain in my feet .walking is a moan out loud as the pain is so bad ,my fear being has the breast cancer spread to my feet or is it side affects of the drugs .
Does anyone else have these symptoms ,is it side affects of the tablets ,or is it because the cancer has spread ....June Leech
Hi. I thought I would Google Anastrozole and pain in feet to see if the pain I have relates to the Anastrozole; which clearly it does. It’s interesting that the pain is in my right foot, as appears to be a common thread. The reason I wanted to post is that I see there has been some discussions on hormone blocking medications. I wanted to share my experience. I was on Letrozole for 12 months and the side effects were horrendous - the psychological ones much worse than the physical. I thought I simply had to “grin and bear it” but when I mentioned it to my Oncologist he changed it to Anastrozole. As we all know; still side effects, but for me it’s better. Therefore don’t hesitate to ask to change drugs to see if it is beneficial. I’ve been on Anastrozole for 12 months now, roll on the next 3 years 👏
I am getting server pain in my right foot, it just cramps up when I am in bed. It wakes me up, and I have to get up and try and walk, as the pain is so bad. This keeps happening, I am on Anastorzole, but have only been on this for 4 weeks, not sure what I should do, as so exhusted getting no sleep.
i am so sorry to hear about the pain you are in. It sounds similar, but worse, than mine. I am on Anastrozole with monthly Leuprorelin injections, plus daily calcium supplements and alendronic acid for osteopenia. Every morning I feel as if I am about 90; I can barely move my feet, knees and fingers. It gradually wears off as the morning gets going but returns if I am still for any length of time. I saw my oncologist yesterday and she said my symptoms were 'classic' Anastrozole side effects, but she was hopeful that things would ease off as my body gets more used to them (I have been on them since Feb). She did, however, tell me that if I really can't cope with it there are other hormone treatments that I could take instead of Anastrozole. She mentioned Exemestane in particular. I will give it until Christmas and see how things are. I really hope you manage to improve your situation.
Hi Pamela, how awful to be experiencing so much pain. I think you're right to discuss this with your consultant as its quality of life were talking about here. I think there are alternative hormone tablets, so don't be scared to ask for a change. Wishing you luck.x
Hi I'm taking letrozle but reading your post about your pain my pain is the same in my feet hands and in my right knee they hurt so much now I'm not coping at all which I can put up with at lot of pain but this pain is bad I can't hold anything now without it hurting me can't walk without going standing in bath with very cold water in which helps a bit with the feet pain my knee hurts a lot now I think I'm falling apart so think I'm going to talk to doctors about changing my tablet but I'm so scared just in case my cancer comes back 😡I hope you get sorted with your pain thanks for reading xx
I haven't been on here for a while. I have been getting a lot of pain in my feet, legs and right knee. I also get pain in my hands which all seems to stem from the se's of Anastorzole which I have been taking for 20months now. is anyone else getting similar problems?
I had pain in my right foot so bad I was unable to walk.I have bone mets and had also badly injured that foot a few years ago in a fall.As with every ache and pain I blame it on chemo(my toes are still numb 2 years down the line)mets or letrozole.My gp sent me for an x-ray and that did not show anything.He is a lovely man and insists on ruling out all the usual before getting around to it being because of bc.He sent me to the foot clinic at the practice and they made me a special pair of insoles for my shoes.These have helped really well, and not just with the foot pain they have also helped with back pain because they make me walk upright!
I am up for trying anthing that does not involve a pill,potion or needle.
Not sure they are made to fit Manolos but they sit quite nicely in my hotters.
Just having a browse.................firstly pain in feet bad again! And I now know it's not due to alendronic acid as not been taking these for a while now. Initially feet were fine, even pain free but then back with a vengence, so still not sure what's causing it. But never mind. I find myself unconsciously singing / humming to distract me from it! LOL.
Anyway I was interested in Mimsy's comments re 'Manolos'.....never heard of them. Will google in a bit. I find it so amazing that this is such an international community...........at the moment I'm trying to read your comment in an American accent......apologies I mean well. Now wondering if you do the same? ie read it with an English accent.....mine's not posh just middle of the road, as haven't really got a regional one.
Anyway all the best to everyone....hope you've all had lots of yummy Easter Egss!
Dovedale, I`ve more or less given up any sort of heels for everyday and wear shoes with thick soles and that are cushiony inside. Clarks seem to make their shoes that way,and some other brands, but I`m in the US so brands are probably different. For summer there`s Flyflot who make sandals that mould to your feet.
I guess the Manolos are out now. Thats how I cope!
Hope I`m not depressing you!
Welcome back to the forums. It's good to see that you're getting some support from the well informed users of this site. If you need a little extra support then the helpline team are only a free phone call away.
Thank you so much for your comments. They have really helped. I don't want anyone else to suffer, but at least I know it's probably part of the treatment. I had chemo, surgery, radiotherapy some 8+ years ago, (apparently I would have had herceptin too, but my bc was before) so I'm not complaining. I'm actually going to see a podiatrist but that's not till the end of April. I also see a chiropractor and although she HURTS my feet, her treatment and aftercare suggestions ie pummel my feet have helped.
Your replies have made me think I should look into getting those is it MBT shoes?
My GP doesn't think it's down to the meds at all and has said it won't hurt if I stop taking the alendronic acid tabs for a while, so I will!
Fingers crossed for all of us and keep smiling, it's a beautiful day today! xx
I'm only on letrozole and would say sore feet are my worst side effect. More on the bottom, heels especially. A bit different from you though as I don't get the pain on wakening, only when I get up and start walking, more hobbling than walking really. Does wear off in general then on and off depending on what I'm doing. Strangely I do wake up with pains in fingers. I'm trying acupuncture for the second time, seems to help a bit, especially as I don't do well with painkillers.
Sounds like you may be getting a double whammy with the other meds too.
I am also on amytriptyline, have been a few years before BC, and other than a sweet tooth and a few extra pounds I do OK with them.
Dovedale - don't think the pain I experienced after my chemo is the same as yours but having read a thread on here I bought some fitflops and found that I could walk in them (even first thing on a morning). Was a bit cold in the winter mind, even though I only wore them indoors . Might be worth a try if you can get some at a bargain price as I did. Good luck. xx
Dovedale, did you have chemo? I had TAC drugs and have peripheral neuropathy in my feet, which is a side effect. The soles of my feet manage to be both numb and painful at the same time. Blast!
Thank you very much KatieF, yes I've been on Amitryptalin too, side effects worse than pregabalin.
The pain has been much worse today, in fact I think I played it down yesterday (think we're all guilty of that one). Today it feels like someone is standing on top of my foot and grinding their foot down! / or it's broken? I now think having read the alendronic acid tabs leaflet that the pain is due to taking them. I always have pain to some degree in my feet, but this time it is far far worse, having to fight back the tears really. Anyway I will speak to the local pharmacist as never seem to have the same brand twice and I've noticed the ingredients seem to be different? So will query this and fingers crossed there will be an improvement.
Are you taking alendronic acid tablets? I'll post the answer after seeing pharmacist.
And I have now had this pain for over 2 years now and have had periods where I have kind of just got used to it, but feel it's too much now, ie affecting my quality of life.
I have pain in my feet and my GP said it was periphrial neauropathy linked to the Arimasin I take....
I've tried Amitriptyline but it knocked me out too much. I now take Zopiclone sleeping tablets to keep myself asleep at night, the pain kept me awake/woke me every time I turned over, and continue to start the day hobbling....
At least I'm not over tired so that helps with the pain and as long as I keep my feet moving, after a slow start once up, I'm ok. I go for a walk every morning wiggling the toes as I go!!
It is uncomfortable although I think I'm getting used to living with it.
Take care and I hope you find something that works for you soon
Hi Ladies (and gents)
Just browsing as many years since I've been on this site. Looking really as VERY fed up of pain in my feet, which I feel may be linked to either Letrozole or poss the Alendronic acid tabs I take as my bone density is not what it should be for a woman of my age (52). Expecting soon to be taken off the former as time approx 3 yrs soon up.
My GP thinks the pain in my feet is due to nerve damage when I slipped and fell downstairs a few years ago as still in pain from that, but I'm not so sure. I also take tablets for the (neuropathic)pain in my feet currently pregabalin, having tried various ones, the pain is less but still there. The pain wakes me at night and can be in different areas on my feet both under and on top. I can liken it to being tender / sore after a bruise, but no signs of bruising. Without the tablets it is hard to walk first thing in the morning and I have had to stop jogging. I have tried to reduce the dosage but have to keep going back to about 350 / 400mg?
Just wondering if this is familiar to anyone?
Many thanks if anyone can help? x to you all!