Restless legs and tamoxifen

Hi group, Does anyone have "restless legs"? I`ve recently starting getting these and was wondering if being on tamoxifen might be the cause. I`ve been taking tam. for 8 months and I would think if this was a side effect it would have showed up earlier. I have a fluttering feeling in my calves and my legs feel like the have to be moved all the time. This really bothers me when I go to bed at night. I`ve asked my onc and he said it could be from the tam. but has never heard any of his other patients complain of this. Anyone out there who might know something on possible restless legs/tamoxifen and what you can do to help this. Thanks in advance! Toni

My wife has had the same symptoms for years and has never been on Tamoxifin. But hers actually gets better if she lays down. I think hers came and went with her blood pressure meds. Her BP went away when she lost weight and I don`t remember which one it was. But my guess is that the "restless legs" was caused by low potassium or magnesium due to the diuretics washing them out of her system. Try an over the counter suppliment high in these minerals. It might work in a few weeks. Joe

Yes, supplements was the first thing I tried and still am. I been using potassium, magnesium, calcium, the B-vitamins, plus my regular multi-vitamin for 2 months now. But still no luck with the flutters that I have in the calves. I plan next to get a referral to a specialist.
Just was wondering if anyone else is in the same situation I`m in: I`m 42 with stage 3, invasive ductal carcinoma with 3 positive lymph nodes. I had 6 months of chemo, a/c followed by 12 weekly taxols. Then radiation, and currently on weekly herceptin and 20mg of tamoxifen, both for 8 months now. I developed these restless legs rather suddenly.....seems like they came overnight. (I have flutters in my calves along with an tickly electrical feeling that is really annoying). No really major diet changes that I can think of...only eating more healthier than before. More veggies, less red meat. I have always taken multi-vitamins and eaten lots of fruit. I`ve always exercised and still do...tredmill, yoga, volleyball and softball, I`m in good phyiscal condition.
Maybe it`s not the tamoxifen but the herceptin...I don`t know. I just wish I knew what is causing it so I can fix it!!
Still looking for more advice from someone with the same experience. Toni

Perhaps you`re cutting back too much on meat? Check for B12 and/or anemia Check your ingredients lists for caffeine in products you perhaps would not suspect Urinalysis (urinary tract can sometimes cause restless legs) - check for kidney function.
By the way, restless legs usually presents as "twitching esp in the leg muscles and esp later in the day, and an over-whelming and sometimes subconscious urge to keep moving".
Without realizing it, it can severely impair quality of sleep (and contribute to daytime sleepiness/fatigue). Research into the cause of RLS is ongoing and answers are limited, but we do think that RLS may have different but perhaps overlapping causes.
RLS often runs in families. Researchers are currently looking for the gene or genes that may be responsible for this form of RLS, known as primary or familial RLS.
RLS may be the result of another condition, which, when present, worsens the underlying RLS. This is called secondary RLS. During pregnancy, particularly during the last few months, up to 15% of women develop RLS. After delivery, their symptoms often vanish. Anemia and low levels of iron in the blood are associated with symptoms of RLS, as are chronic conditions such as peripheral neuropathy (damage to the nerves in the legs and feet) and kidney failure. Recent literature also points toward an association between RLS and symptoms of attention-deficit hyperactivity disorder.
If you have no family history of RLS and no underlying erhaps you`re cutting back too much on meat? Check for B12 and/or anemia Check your ingredients lists for caffeine in products you perhaps would not suspect Urinalysis (urinary tract can sometimes cause restless legs) - check for kidney function.
By the way, restless legs usually presents as "twitching esp in the leg muscles and esp later in the day, and an over-whelming and sometimes subconscious urge to keep moving".
Without realizing it, it can severely impair quality of sleep (and contribute to daytime sleepiness/fatigue). Research into the cause of RLS is ongoing and answers are limited, but we do think that RLS may have different but perhaps overlapping causes.
RLS often runs in families. Researchers are currently looking for the gene or genes that may be responsible for this form of RLS, known as primary or familial RLS.
RLS may be the result of another condition, which, when present, worsens the underlying RLS. This is called secondary RLS. During pregnancy, particularly during the last few months, up to 15% of women develop RLS. After delivery, their symptoms often vanish. Anemia and low levels of iron in the blood are associated with symptoms of RLS, as are chronic conditions such as peripheral neuropathy (damage to the nerves in the legs and feet) and kidney failure. Recent literature also points toward an association between RLS and symptoms of attention-deficit hyperactivity disorder.
If you have no family history of RLS and no underlying []
I can extrapolate from that, that perhaps hormone fluctuations could cause such to erupt. There`s some causes and meds mentioned there. If you don`t find the cause, perhaps a mild benzo (if not contraindicated) would resolve the problem ? HTH J

Toni wrote << Maybe it`s not the tamoxifen but the herceptin...I don`t know. I just wish I knew what is causing it so I can fix it!!
I have not had this difficulty, but I do know that restless legs may be associated with some neurological conditions and/or even some medications. My suggestion, if you haven`t already done so, contact your oncologist and explore possible need to see a neurologist. Take care and wishing you all the best!

Hi toni, I suffer with restless legs have done for years has nothing to do with the tamoxifin, mine just started one day and I have had them ever since, no real medical reason for it. Take care Balsey

"Sleep-Ease". I don`t know which ingredient. Lots of sympathy from me to you, it`s horrible.

Hi,
I came across the question concerning "restless legs".
I have had restless legs for years. Going to the movies was a nightmare, I would cross and uncross my legs a million times, driving me and the person I was with crazy. Then I found an inexpensive miracle; it's called RESTLESS LEGS by a company called Hyland's. They are Homeopathic quick disolving tablets. I use them when I go anywhere where I will be sitting for more than 15 minutes and also use them at night if the need arises.
They can be found in CVS, The Vitamin Shoppe, Walmart and several on line and catalog vitamin companies such as Swanson and Puritan Pride. I have paid anywhere from$3.99 to $7.99 a bottle.(50 tabs per bottle) I recently found a sale for $3.99 and ordered 10 bottles. I have turned friends and relatives on to this great remedy. The bottles states that they temporarily relieve symptoms of the compelling urger to move legs, to relieve sensations of itching,tingling,crawling,and restlessness of legs.
I can tell you it worked for me, my friends and my 83 yr old Aunt.
Dee

Hello Healthyme. Welcome to the forum. I hope you will like it here. You know so many people in your direct environment (friends and aunt) that have restless legs? I can hardly believe that. Sorry

Anyway, I would like to take this opportunity to advise our members to read things like this with caution. The ONLY and I mean the ONLY way to use these kind of products is by your doctor's agreement to it. These are not things one take without consulting a doctor.

Hi:
I have found that there seems to be a great number of people who suffer from restless leg problems. I have met
many people who have told me about their problem. Maybe like attracts like?? lol. I tell people what worked for me and I leave it up to them to decide whether or not to try the product. I have never found any problems with the pills, but checking with your doctor ( as long as he/she is open to homepathic remedies)is always a good idea.
Dee

I never had restless leggs before the tamoxifen. Nurse told me it was from the benedryl that was given in conjunction w/the tamoxifen. I tolerated it for the first few treatments but then it got so bad I thought I was going to go NUTS! I mentioned it at the next treatment - they lowered the dosing of benedryl and it worked wonderfully. Talk to the nurse before they infuse - once it's in you they can't do anything.

Hi Brown welcome to the forum. Lucky for you you could stop the progress of this restless legs thing. I don't think there are tests to see if one is prone to such side effects of other medicines, no?

I know you posted almost 3 years ago but I'm having similar symptoms. I've been on Tamoxifen for about 28 months. During that time I started having restless legs. I didn't associated it with the Tamoxifen but my oncologyst told me that one side effect is muscle cramps (which I had also started having at night). Then I began thinking maybe the resless legs could be a side effect as well. Anyone else have this problem?

Hi Trudy, Welcome! I am one that had alot of restless leg and cramps with Tamoxifen. still have alittle bit, But I was told to drink more water and it would help sometimes. I have to get up and walk sometimes. Are you taking anything to help them? There is a patch that I buy for pain and it helps it. Please take care, I also have pain (in bones) taking Arimidex. Good luck and keep us knowing how you are doing,Debbie