Are you 55 or younger on Tamoxifen, & having NEW joint pain?

Pinkheart - can't WAIT to see pictures of your garden.  Most of my sunflowers are "volunteers" that manage to escape the chipmunks, squirrels, rabbits.  Every time I plant seeds, or transplant if I've started them indoors, something ATTACKS and EATS the middle of the stem - just chomps, most of the first few leaves, and leaves...pardon the allusion to (Eats, Shoots and Leaves) but I think of that evvery time it happens, or I"d cry.

Still, just passionate about sunflowers - always make me smile- and the birds do so love them.

BTW, I'd ask your rad onc about acupuncture - some insurance companies DO cover it, and as it is your oncologist, maybe he could, ah, well, "code" whatever the treatment is so it could be covered.  Ok, ok, I know I'm "s-t-r-e-t-c-h-ing the truth a little, but darn, we're talking bc, and rads, and some very tough ( lymphedema) stuff...you DESERVE a good deal on this one!

Good luck....

Just found this thread-add me to the list. I'm 42 and never had joint pain prior to BC or during chemo or Rads. Then I started taking Tamoxifen in Sept 2011. Within 6 weeks my right shoulder "froze" and was so painful I couldn't move my arm-my doctor thought I tore my rotator cuff but an MRI showed inflammation, tendonitis and impingement. After prescription anti-inflammatories and 6 weeks of physical therapy it improved and then overnight it happened again-severe pain/impingement. At exactly the same time my right hip started hurting and would wake me up at night. Ortho doctor said it's also severe tendonitis-xray was normal. Both shoulders and the hip still crackle/pop like the tendons/joints are out of whack. I've lost my flexibility in the right hip and can't stretch it out much anymore. Meanwhile, my lower back has joined in as well and aches most of the time-particularly at night to the point that it wakes me up every night.

The PT just shook his head and said that "something" is causing a severe inflammatory response in the joints-any guesses? The MO, RO and Ortho just shake their heads and say this is not a usual SE to Tamoxifen and wonder if I've developed an autoimmune disease. All I know is that all of this started within 6 weeks of beginning the Tamoxifen. I'd be in a panic by now about mets except that I had a clean PET scan in April of 2011 and tumor markers are normal. Seems to me that Tamoxifen is clearly the culprit here. I'm exercising-walking on a treadmill and swimming a few times a week but the pain continues. I refuse to believe this is autoimmune. I'm waiting it out and hoping my body somehow adjusts over time. I'm 90%+ ER/PR+ so I can't consider stopping the Tamoxifen...

Jackboo09 I had Herceptin as well (finished in Jan/2012) and I've been on the Tamoxifen for 6 months now. I NEVER had joint pain prior to the Tamoxifen and the joint pain has become progressively worse and worse ever since. I'm 42 years old by the way. My pain is particularly bad in my hips and back but I've also had it in my shoulders. The more I compare notes with others and think about the variables, the more I'm convinced that this pain is a combination of SEs from Tamoxifen and still being in menopause a year after chemo i.e. no estrogen. Are you still in menopause as well? I see that you are ER+ too. Problem for us is that we can't have estrogen so I think joint pain comes with low estrogen which we can't replace.

I'm now trying Fish Oil and Glucosamine-Condroitin to see if it helps my joints along with exercise. I'll keep you posted. I have decided not to have a bone scan for now (had a clear PET scan in 4/11) . I'm going to wait it out until my next followup in a few months to see if it changes at all-I'm hoping somehow my body can adjust to all of this and it will improve. At first I was spooked by this and feared mets but my joint pain has been progressive in various joints and it does get  a bit better during the daytime when I'm moving around but is awful at night. I think mets pain is more constant.

Get a scan or MRI if you will feel reassured (I had a shoulder MRI and hip xray last Fall that were normal). Mainly, I'm so sorry that you are dealing with this-it is awful. I can relate- I thought I'd finally be feeling better by now but instead I never sleep and have terrible pain. BC problems seem to continue endlessly...Also, hang in there with the Herceptin-you're almost done, you can do it!!!

Jackboo09 Where in England? My husband is English and most of his family are in Devon:) I love it there! We still have a house in Thame and are considering a move back to England within the next few years.

I don't think we have an alternative to Tamoxifen if we are premenopausal. Unless you choose to do surgery which puts you in menopause and then you could be switched to the post-menopausal medications (Femara, etc) but that's rather drastic and I think those drugs are even more likely to cause joint pain because they work by actually sucking the estrogen out of your system (Tamoxifen just blocks the receptors but allows the estrogen to still circulate if I understand correctly).

Yes, I had my PET scan a few months after starting chemo. The MO told me to get it done at the beginning of chemo in Feb/2011 as a "baseline" but I knew she was really checking for mets and I was so afraid of the stupid scan that I put it off until April!

I know what you mean about the doctors opinions. My MO and RO both said this is not a common reaction to Tamoxifen and must be an autoimmune problem. I don't believe that and I know there are countless women having this joint pain from Tamoxifen so we are not crazy. Of course these are the same doctors who dismissed the neuropathy in my hands and said "it must be carpal tunnel syndrome"-it was in fact neuropathy from chemo and it's gradually going away. Doctors don't know everything. They certainly don't like to hear about symptoms that fall outside of the norm because we don't fit in a neat little box.

I think it is a good sign that your pain varies in intensity. Mine does too. It's quite tolerable during the day-background nagging pain as you described. But at night mine is really bad and always wakes me up.

Re: Blood tumor markers are notoriously unreliable-in some people they show activity when mets are present and in others they are normal even when mets are present. Unfortunately, there are no tried and true tests. For that matter, even a PET scan can miss lesions that are smaller than 1 cm-every test has limitations.

I go to the gym 2-3x/week and I've been walking 2 miles on the treadmill each time, doing some circuit weight machines (very light weight these days) and swimming 20-30 minutes. I'm nowhere near my previous fitness level. In fact, just before my BC diagnosis I was hiking and whitewater rafting in Costa Rica. Now I feel totally wrecked by all of this treatment. That's the frustrating part. I thought I'd be getting back to "normal" now.  Instead, I feel I've aged significantly from all of this...

I do wonder if Herceptin is somehow adding to our problems-some people complain about joint pain with it although I never noticed problems on H before Tamoxifen but who knows when they are overlapped? I finished H on 1/18 so I guess I'm hoping that the more variables I eliminate, the more clear it will become and the better I will feel (here's hoping!) I'll definitely keep you posted on anything that works.

And push for a scan if it will ease your anxiety-we have enough to worry about...

Hi Dragonfly

I live in Yorkshire. I seem to remember visiting Thame on a holiday once. Gosh its a small world.Thank you for your reply. I will respond in detail but I have been at the clinic today and I'm beat. Had Herceptin number 16, just 2 to go. I had miscounted the number of treatments, which must be a good thing as they are pretty routine now.

Spoke to the doc about Tamoxifen but nothing to get excited about. 

Will post again very soon.

Best wishes

Liz

Hi to everyone again

Update: Had my 16 tx on Fri March 3rd. Have decided that the docs dont seem interested in side effects. One way discussion with no useful answers. So I went back to my family doctor who has listened and referred me for psyiotherapy. The sciatica comes and goes so I have been able to feel easier about it. I also know that I can experience aches for a short time after Herceptin infusion.

However, I do get cross about the fact that there is no time to have a detailed conversation with one's oncologist. I have questions that I would like to ask about the role of hormones/tamoxifen/periods resuming/being slightly overweight etc.

I actually wish I didnt read/research because it hasnt got me anywhere.Here in Uk, if NICE havent approved it, then it aint happening.

Vent over an done with!!!!!!!

Liz

I am so glad I started reading your posts! I have been on Tamoxifen for 3 1/2 years and never had any pain, until recently. I have tendonitis in my right wrist and now pain in both my hips! I called my pharmacy to see what changes were made with the meds but have not heard back yet, but I will keep you posted!!!

I also have terrible joint pain in my hands. I'm a lace knitter and at first the knitting helped. But not anymore. It's constant now. That coupled with the horrid sweating has brought me to the decision to stop the tamoxifen. 

I'm 52 next week and have been on tammy for about 7  months.

Aged 52 here and on Tamoxifen since June. I have shoulder pain, lower back pain, and oddly, foot pain. I am very active, exercise every day. My MO absolutely attributes this to the Tamoxifen. She said that she will switch me to an AI after two years, and in the meantime, to try to put up with it. It's not in your head, it's the meds.

I've been on tamox since 2010 and I have joint pain that comes and goes, mostly in the shoulders, elbows and most painful, in the right hand (coincidentally my bc was on the the right side, so it's just the "bad" side).  I'm going to be 50 in a few weeks.  I've noticed that the last few days (don't know if it is because it's been raining and damp - this is south Florida, so it's always humid and damp), my wrist, hand and fingers are just killing me.  My hubby did some massage on it last night and I've been taking motrin to try and ease the pain.  It has not been this bad since I started taking it in 2010, after unsuccessfully trying all of the AIs and having such incredible pain that I couldn't walk.  Up until this point, the most noticeable se from tamox has been rampant insomnia, for which I take .5 mg of ambien every night.  If I don't take it, I don't sleep.  Period.  But, this pain in my hand is so painful, as I type, that I am almost in tears.  Why now?  I will have to look at my bottle and see what brand it is - maybe that has some cause?

Funny you should mention leg cramps.  I have always been prone to them, but NOTHING like I get now.  It seems like the littlest stretch causes a charlie horse in my legs and feet.  Sometimes in my arm or neck!  I work out, but if I flex and stretch while laying in bed, boom! I'm out of bed trying to flex the charlie horse back down.  I take dose dense of Vit 3 (1x weekly) and magnesium/zinc daily, but it doesn't seem to help.

Athena-I've tried Glucoamine twice, once for 3  months & then for 2 months.It didn't work for me, but Turmeric seems to be helping my arthritis(worse since starting tamox. Suprised because supplements/homoepathics/etc have never worked for me inthe past.

For leg cramps, I found using a 6 inch foam roller helps http://carrotsncake.com/2011/11/the-right-way-to-foam-roll.html  The other thing that helps me in compression socks. Not the medical variety but the one's made for runner's. They start at about $30(ouch!). But I find if I wear them for even 2 hours a day it really helps. Occasionally I get cramps in my upper legs & butt muscles, Haven't figured out what to do for them.

I've had muscle cramp issues since my teens. They became more persistant after starting tomox. They really got bad when I was anemic. Not sure if this might be the case with anyone else. Just throwing it out there.

I hope you will excuse me for posting here; I am 72 however I did want to add a comment on something that helped me.  I never had a pain before tamoxifen either, now I have tendonitis in my right ankle and it is so painful that I had to give up playing tennis.  I also have problems with my right wrist but I am a jeweler so that may be the cause of it.  However for the spasms in my feet and legs I found that adding potassium  (low sodium V-8 juice) totally alleviated them.  I know just how annoying those can be in the middle of the night.

coraleliz -I will try the tumeric. It seems to be helping a lot of people. Thanks for the tip.