I’ve been taking tamoxifen since Xmas 2012 and just this last week I’ve noticed my toes and fingers have intermittent (but increasing) numbness and tingling. I only had one cycle of FEC back in November 2012 and I don’t remember having tingling then, so I don’t know if it could be the tamoxifen. I’m also on mirtazapine (antidepressant) but my doc doesn’t think it’s that.
I had a bone scan last month as I’ve been getting upper back and shoulder blade pain, but it was clear which is great! But, I’m still worried of course that there’s something growing and pressing on nerves somewhere, or some other sinister condition going on!
Anyone else out there with the tingling numbness who can explain?
Thanks,
Lisa
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Dear Lisa
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Janet
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Bumping for Lisa.
Apologies Lisa, I can’t comment as I’m just at the very start of my journey. But I’d like to wish you the very best of luck for thr remainder of your treatment.
Soft Squishy Cyber Hugs
Martha xx
I’ve only been taking tamoxifen for a month and have vague pins and needles in my hands and feet,
Thanks everyone who has replied.
Martha, wishing you well on your journey and better luck than I have had/made myself. Hugs. Nobody wants this journey and I for one hope it will end well.
Maire, it was such a relief to read your post! Gives me hope that it’s just a normal side effect and nothing to worry about. I realise there are many possibilities, but it’s good to know I am not alone with my tingling. I can’t blame surgery/rads as it’s in both feet and my other arm, just woaffront the ‘affected’ hand.
Janet, I will certainly give the team a call next week; I am also seeing my GP so will quiz him - although he’ll probably just say ‘maybe side effects’.
For a separate medical condition I’m having a chest CT this month, and have my 6 month mammo in June. So should know more in a few weeks about anything lurking inside.
Love and light, it’s a tough old hill to climb sometimes but we’ll get there.
Lisa x
Hi Lisa79,
tingling/aching/pins and needles type pain in the hands/feet seem to be a side effect of Tam and Letrozole, there is a thread on here that may be of some help to you, I take Gabapentin for mine which works for the pain but I still have a numb feeling. I also get very bad rib ache which my onc has said is yet another se which we suffer to keep this dam thing at bay.
Thanks Milo, good to know I’m not alone. I don’t really want to take yet more pills, already on mortars pine for depression and to help with sleep, but will keep gabapentin in mind if it gets worse. Another 4.7 years to go…!
I’m actually looking forward to a chest CT this month to see if there’s an obvious cause for my back pain, and my 6 month mammo in June. Is that odd?!
Chin up,
Lisa
Hi Lisa79. I developed severe joint and muscle pain during chemo which ended April 2012. Can’t remember when i started the tamoxifen. I have had ongoing pain and tingling and reduced sensation in my hands and feet since. You need to watch when handling anything hot or freezing as you can get burned and not realise. My feet feel as though i am walking with cotton wool balls to them and this can affect my balance. The pain in your back and shoulders is something I have only recently developed. I have been told these are all side effects of my treatment, I know it is very worrying and I am not sure myself how to overcome this. My last appointment with the consultant was in November and not sure when I will get my next check up. I attend a chronic pain clinic too and they have prescribed gabapentin, tramadol and I am also on diclofenac and paracetemol as required. Do you have any pain?
Hi Annie, thanks for your reply. Sorry you hear you have a lot of chronic pain. I hope the clinic and meds are helpful.
I do have pain, it’s not severe but always there in my shoulder blade (same side as the BC), that shoulder clicks and grinds a lot, and it feels like my spine is twisting a bit away from the affected side. It is always clicking, even from just rolling my shoulders. I don’t find ‘normal’ pain meds do anything for it, and am worried about taking anything stronger. I get heartburn from NSAIDs sometimes so my doc is reluctant to give me diclofenac. I also have quite a weak, sore left knee which feels like soft tissue pain, but I don’t want move it much as it makes it sore. I think Tamoxifen somehow makes weak parts of our bodies play up. Thanks for the reassurance that my shoulder and back pain are to be expected.
I agree, it is difficult to not worry about things, ESP as I foolishly didn’t complete my chemo (only did one FEC) so I have to make the tamoxifen work, or at least stick with it. I know (hope) it’s doing something as my periods have totally stopped, and I have increased anxiety/depression and sweating hands, so I can imagine the aches are related. I haven’t ever found relaxation techniques to work as I start worrying again as soon as I stop them! But maybe give meditation a go and see if it helps you 
I’m told the anxiety is ‘normal’ in cancer survivors and in anyone with chronic (serious) conditions. Doesn’t make me feel any better/less worried, but nice to know I’m normal
I hope your next appointment goes well. I see the surgeon for me 6m ish check this month, but it’s my mammo next month that will give me more reassurance (or not).
Love and light,
Lisa
I started taking tamoxifen in early of 2012 …only recently in 2016 I first felt tingling & numbness in my second right toe…Then 1 month ago numbness started in my fingers,left arm,dull pain in left shoulder blaze for about a month now I am sick of this **bleep**… Although I have been working out since 8 months after my breast cancer surgery 4 to 5 days a week high I impact Cardio & Toning I just love it…But this numbness & dull pain I have been taking 800 milligrams the pain still come back