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Tamoxifen and Leg Cramps~ what have you done about it???? OUCH!!!!

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

I have been taking Tamoxifen for my recurrance for about 5 weeks now...and OMG~ the charlies horses I get in either leg in the middle of the night is absolutely affecting my quality of life! I mentioned it to my oncologist who sorta poo-poo'd it as odd and shrugged it off. No mention that it is a side-effect or what if anything I could/should do about it.
So my sisters...if any of you has experienced this~ any remedies that helped???
Thanks in advance!

Hugs,
Chen♥

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I havent had leg cramps, but i do get hot then cold then hot. I dont sweat too badly, but in the heat or sun my skin feels prickly. I had leg cramps when i was preganant I learned to never flex my feet downward and thry stopped. hope it continues to work

Curlz's picture
Curlz
Posts: 42
Joined: Aug 2010

To confirm my suspicion (that Tamoxifen can indeed be blamed on my terrible foot cramps) AND to offer up creative solutions! I know that potassium is good for charlie horses, so I've taken it on occasion, but I really hate bananas (unless they're in banana bread...hmm...maybe I've got to find a light muffin recipe?). LOVE tonic water, but didn't know about avocados being so high in K--will try them too.

The crazy thing is that I went to my massage therapist (OMG, I leave there feeling like jelly) and he spent the first 1/2 hour on one foot. And the next 1/2 hour on the other. That's how bad they were! It suddenly dawned on my that my doctor's assistant has asked me a few times if I have leg cramps (nothing of great note), but maybe that's what's causing the feet to cramp! And here I was blaming it on the switch from sandals/bare feet to closed shoes. DUH!

Thanks for all of the info/tips, ladies! Will let you know if the soap thing works for me. One question--do you put your feet/legs ON the bar? If so, I'm wondering if the elevation is helping too...?
Curlz

chenheart's picture
chenheart
Posts: 5182
Joined: Apr 2003

My foot/leg are NOT on the soap...they are just there..on my side of the bed...one kinda at calf level, and one at the foot, but nothing special. Good luck!

Chen♥

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

CRAMPS!!!! OUCH!  Well this is what works for me.  Have a banana and a glass of water late evening,  the banana supplies potassium and of course water hydrates. Cramps happen when your muscles are a little depleated of both.  Good Luck and God Bless!.... Kathy

Other foods high in potassium

Baked Potatoes (With Skin)

Dark Leafy Greens (Spinach)

Dried Apricots

Baked Acorn Squash

Fish (Salmon) 

Avocados

Mushrooms (White)

White Beans

 

Rague
Posts: 3305
Joined: Aug 2009

While it enough for some with low K levels to add more foods that are high in K (potassium) - for some of us it isn't enough.  I eat a LOT of 'green leafy veggies' (collards, kale, turnip, beet, mustard and spinach greens), potatoes with skin on (baked, boiled or mashed) several days a week, at least 3 avocados a week (LOVE then) - not to forget bananas.  Unfortunately though since 1/2 way through 12 weekly Taxol, I've had to take mega doses of K to keep my levels in the 'normal' range.  My body tells me real quick when it is dropping lower so increase it for a day or two.  I never go anywhere I'll be very active, especially in warmer weather, without having a bottle of K in my saddle bags, tackle box. backpack and glove boxes of all our vehicles 'just incase'.

Winyan -The Power Within

Susan

JuJuBeez's picture
JuJuBeez
Posts: 332
Joined: Apr 2010

Thank you for bringing this up! I thought I was going crazy! My feet and calves have been cramping so bad. I just started Tamoxifen mid-August. There are nights that my toes will shift because my feet are cramping so bad. Now I know what to look for. Knock on wood, I haven't had any weight gain, but the hot flashes are bad sometimes. I'm like a Katy Perry song, I'm HOT, I'm COLD, I'm UP, I'm DOWN... ha ha! I am definitely going to try the soap thing. I'm on 37.5 mg of Effexor too. I started out on the 75, but I was a zombie on it!! I was dozing off at work at 8:30 in the morning. Even with sleep and coffee!! I notice I get dizzy a bit from the Effexor (I'm assuming it's from that... but who knows.)

Thanks, Ladies! I appreciate your stories and tips!!

JustRenay's picture
JustRenay
Posts: 54
Joined: Oct 2010

The things that have helped me the most are walking/stretching and sometimes I have to take a pain reliever...check out this website, and you can research any med...see what others have experienced...I read there that for most people, the side effects subside within a month of stopping the medication. Not sure how long you have to take it...I've been on Femara for 2.5 years, after 2.5 on Tamoxifen, and my side effects (similar on both meds) have gotten a little worse over time, but my doctor says that when I stop the meds (in April 2010), the side effects should ease quickly. Hang in there. Renay

SIROD's picture
SIROD
Posts: 2130
Joined: Jun 2010

Claudia,

I had them too. Awful enough in having to have help out of the pool.

Calcium, Magnesium and Potassium. Make sure you take some of those. I can't remember the amounts, but your primary doctor should help with that information. Oncologist, just aren't into that stuff.

Best,

SIROD

EveningStar2's picture
EveningStar2
Posts: 494
Joined: Jan 2009

I was on tamoxifen for 10 months and had a lot of problems with leg cramps. After I was off, I was put on Magnesium because my primary doc checks *everything*! I realized after I was on it for awhile, how much better my feet felt. It's OTC and cheap at Sam's club.

Maureen

helen e's picture
helen e
Posts: 222
Joined: Sep 2009

when I was on it (am going back on it in 2 weeks) I didn't get the cramps but my restless leg syndrome was much worse. I have been off it for two months and haven't had any issue with my legs. I never made the connection. Just another thing to look forward to when I go back on it.

Helen

Curlz's picture
Curlz
Posts: 42
Joined: Aug 2010

And I'm still sleeping w/a bar of soap under the bottom sheet, down by my feet. I admit that I've also been drinking grapefruit juice each day to up the potassium, but that didn't start for a couple of days after putting the soap in the bed. Can't be sure yet what's working, but I'm NOT COMPLAINING!!! :-)

THANKS FOR THE TIP!
Curlz

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

Wow am I glad this post has gotten bumped back up - i found out that I will be starting on Tamoxifen soon - i didn't think I would because im such a weak receptor, only 1-4%, but my Dr. feels this is enough for me to still benefit from taking Tamoxifen. And hey, if it'll offer me even a little bit of extra protection from this coming back - im gonna take it! I never researched it because i didn't think it would apply to me.
I hope I dont get the leg cramps - with both of my pregnancies I would get leg cramps at night when I wasn't drinking enough milk during the day - i found when I drank more milk, I didn't get the cramps. Hopefully if i get the leg cramps i can keep them at bay with the milk, toxic water (love that!! ;), soap in the bed and cucumbers (because i just CANT eat bananas!!)
*hugs*
Heather

Curlz's picture
Curlz
Posts: 42
Joined: Aug 2010

Glad I'm in such good company! :-)

Fwiw, everything I read/heard was about LEG cramps. Never heard anything about feet, so it took ME a couple of weeks before the light bulb went off. I've been on the Rx since early July, but I really didn't start moving my arse around a whole lot until mid-Sept--and that's right about when I started noticing the foot cramps. More exercise = more need for potassium for me, I guess!

Sher43009's picture
Sher43009
Posts: 601
Joined: Nov 2009

Bumped up for MGM42

Hope this helps.
Sher

mgm42
Posts: 494
Joined: Nov 2007

Thank you so much. Hugs, Marilynn

PinkPearl's picture
PinkPearl
Posts: 280
Joined: Oct 2010

I have a friend, an old university swim coach, who swears by the bar of soap under the sheets. I could hardly believe it but she has used it for years and it works for her. I took tamoxifen for 6 years and never had leg cramps from it --only hot flashes. :(

mgm42
Posts: 494
Joined: Nov 2007

The STAR trial was just completed, which compared the Evista type drug (raxofeine ??? sp) and tamoxifen. Onocology researchers were SURPRISED to find that leg cramping was a side effect of tamoxifen and at the number of women who complained of severe leg and foot cramping. Duh. All they needed to do was read these boards. My info comes from a news article on breastcancer.org. I, too, have these cramps throughout my body. Been on tamox for 13 months. They just started in full force about 6 weeks ago. I'm going to try diet tonic water with a bit of fruit juice at night, the soap in the bed thing, massage, accupuncture, an electric blanket to keep my legs warm at night, and spliting my dose to 10mg in the AM and 10 mg at night. At this point I will try anything. If something works, I'll gladly post it. Hugs, Marilynn

Sher43009's picture
Sher43009
Posts: 601
Joined: Nov 2009

Another bump up

sausageroll's picture
sausageroll
Posts: 415
Joined: Dec 2008

I had not seen this thread earlier..but thank you Chen.

I am on Femara and the leg cramps started after about 2 weeks. Then my hair fell out ...again! I too asked my oncologist about these side effects and she too poo pooed it. However her nurse practioner talked to me before I left and said she had seen these side effects with other patients.

Thanks for all the info ladies. I'm definitely going to try the soap and the tonice water. My podiatrist said to drink water during the night too.

Glad to hear you are feeling good Chen. I know what you mean about waiting for the other shoe to drop. take care. Pat

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

bumping up for laurissa!!!! hope this helps.

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

bump so Laurissa can see it

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Bumping up for Laurissa.

taleena's picture
taleena
Posts: 1612
Joined: May 2009

Chen... I've been getting them pretty bad for the last three months (since I stopped the Zoladex, Femara combo) and went on the Tamoxifen... I agree they do interfer with the quality... you can't get a good night sleep... I find myself up and walking around at least 3 to 4 times a night... I have found that if I eat a bananna to help replace some of the potassium it seems to help... If I don't eat a bananna I'm walking in the middle of the night trying to walk off the leg cramps... ugh! My onco shrugged it off too... but I didn't have this issue until I started the tamox.

Good luck ... Hugs

~T

samsarah's picture
samsarah
Posts: 1
Joined: Aug 2011

Hi - also suffering from cramps in legs at night and sometimes in the day.

Will try the soap thing.

Does anyone have a bubbly twitchy feeling in their legs?

Thanks for all the great advice.

dyaneb123's picture
dyaneb123
Posts: 951
Joined: May 2009

I've been on Tamox for over a year with no problems until this extreme heat. Last weekend I was outside doing some heavy lifting in 90 degree heat. Later every muscle and joint in my body was screaming! I had charlie horses in my thighs for gosh sake! I ate a banana, hydrated, and took a muscle relaxer. Something in that combo worked.
Dee

TKMomma
Posts: 54
Joined: Jun 2011

Started tomaxafin about a month ago. Very painful chuck last thursday, two on Tuesday night and three Wednesday night. Starting to be afraid to go to bed. trying to make sure aI have enough pottassium and water from dehydrading. Just a thought ..... get night sweats and since sweating out possible pottassium maybe that's what brings it on. Don't know will ask my doctor when I see him in Sept. Find this interesting so keep thoughts coming. All I have to say is OUCH !!!!!

Gzie
Posts: 1
Joined: Apr 2012

I'm on tamoxifen almost 5 years now. I found that if my legs were in any way cold, I would get cramping. At night, I wear thick sweat pants and warm socks and keep my legs covered with a down comforter. Sometimes use a heating pad. It's odd because I don't feel cold, and even if the room temp is warm, unless my legs are covered up and not exposed to the air, I will get cramps. (I also take a calcium supplement, Citrical+vitamin D. Without vitamin D, your body cannot absorb the calcium.)

srreed1981
Posts: 1
Joined: Mar 2013

I was having foot camps in both feet, leg cramps, and charley horses; day or night.  Be careful, because one night I jumped out of bed on the cramping leg and it did not "work"!  I fell flat on my bottom.  I eat a banana a day and it did not help.  I tried tonic water and coconut water.

I asked my oncologist about it and he said to try magnesium supplements.  I forgot to ask the mg amount, so I bought 500mg and started taking one at dinner every evening.  Amazing results.  I did not have a cramp for two weeks.  I have them occasionally now, but the occurrence has been cut by probably 75%.  I mainly have strange foot cramps; nothing I do helps, except to find some hot water to soak them in!

I eat foods that should supply magnesium to my body, but for whatever reason, maybe I am deficit.

Try it and see if it works!!

disneyfan2008
Posts: 5337
Joined: Oct 2010

Terrible, painful seems like they last forever............always at night...

 

Dr says it has nothing to do with Tamoxifen...I question that...i have 6mths left on tamoxifen-I am not sure how long it will stay in my system-but I will take not if I DO not have the cramps..

 

Denise

LBConant
Posts: 2
Joined: Jan 2013

I too have serious leg cramps, toe and feet cramps.  I have experienced Charlie horses before but, nothing that can compare with them since I started the tamoxifen.   My dr.  also made me feel there is no connection.  I eat banana 's, and lots of avocado.  I know that my potassium level is ok.   Has anyone found any thing that eases the occurrence of muscle cramping?  I sure would love to know....theses things are excruciating...

All suggestions appreciated.

Linda

jojo2
Posts: 28
Joined: Apr 2013

There is a product by Peter Gilliam called Calm that has magnesium and calcium that comes in a powder. It is mixed in water and tastes good. It worked well for me when I had many leg cramps before diagnosis. Now since I'm ordered to take Calcium with Vitamin D to protect my bones I just take a magnesium supplement every other day and increase to daily if I have lots of muscle cramps. I'm on Arimidex and have more problems with spasms in my chest wall if I overdue with lifting things. Like with moving or packing to go to the lake, the cramps over my chest (I had a bilateral mastectomy), are fairly severe. I found a natural product by Hyland that is called Leg Cramps that works great. I dissolve 3-4 under my tongue and get relief. May have to take a few doses.They are available everywhere, I have them stashed everywhere because I can't be without them. Hope something works for you. jojo2

peanutcat's picture
peanutcat
Posts: 104
Joined: Mar 2011

Hi Everyone!!! Mag Ox the supplement works for me. My pmc told me about it. I thought I was getting clots but he said no try Mag Ox.  Potasium I heard is good too. He mentioned eating bananas, but mag Ox worked a lot better.  Ask your doctor everyone.

 

Let me know what you guys do. OK!!!!!

HUGS to you all

desertgirl947's picture
desertgirl947
Posts: 419
Joined: Oct 2012

Makes me wonder.  I started tamoxifen in August.  It seems to me that I have been plagued with arch/toe cramps for which I have no answer.  It's not that I have wiggled my toes weirdly; usually my arch cramps are due to my feet being cold.  That's not been the case here.  I just "gut it out."  On a rare occasion I get a cramp in my leg.

These cramps are not a daily occurrence, but they seem to be at least weekly.

e

peanutcat's picture
peanutcat
Posts: 104
Joined: Mar 2011

Laughingchenheart,

My primary told me to take Mag Ox it really wors. Ask you oncologist or primary if you can takr it. It take about 2 weeks but it works.

peanutcat

KathyLQ
Posts: 78
Joined: Dec 2010

Well, I just spent a horrible night waking every hour with leg cramps... and I'm suspecting the Tamoxifen.   And I know about taking potassium, magnesium, calcium, I take them regularly, and I drink lots of milk.  None of those stopped the cramps, that's evident.  They've just been getting worse.   I'll go back and tell the doc but I suspect I'll have to make my own decision to stop.

These drugs they give you have bad side effects.  Is it worth it?  I was on Arimidex for 2 years... had progressinly worse joint issues... ended up with a severe left hip/SI joint/leg pain, the docs just gave me pain meds.  Then a MRI and other tests.  They found a buldging disk touching my nerve going to the left leg. Pain doc said I'd have it the rest of my life.  It was so dibilitating, I couldn't sit to work, I started working at home in my recliner, on my computer.   On Tramadol constantly and laid around a lot to get pressure off the back.   Had physical therapy, made it worse.  Couldn't lift anything.   Then, I decided to stop the Arimidex, just had a gut feeling.  And guess what?   2 months later, most of the back/leg pain is gone.  No more serious pain meds.  $10,000 in charges to the insurance and none of them figured it out.  I had to figure it out myself.  So they switched me to Tamoxifen... and now I'm dealing with bad leg pain.  And they keep warning me there is a risk of blood clots in the leg. 

So I guess I have to make a decision.  Quit or not?   What is quality of life?

 

 

disneyfan2008
Posts: 5337
Joined: Oct 2010

magnesium helps me..

 

i just stopped tomixifen this month-after years of conmmenting on TERRIBLE painful cramps at night (while sleeping) finally Onocologist office NP suggests magnesium-and for months now only 1-2 in past ongoing 4-5 weekly

Denise

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