living with joint pain long after chemo (WHY)

Trust me, I am most blessed to be a breast cancer survivor since 2011. However I also have developed all over muscle soreness and joint pain, which does not go away. My GP diagnosed Fibromyalgia,  however I recently visited a specialist (arthritis) to see if there is anything else that may be causing this issue.  I also suffer from "brain fog" and findI have difficulty formulating basic sentences, and have been so fatigued sometimes that I sleep ALL DAY, only getting up to use the restroom. I do know that my cancer was caused by my hormones ( was at stage 1, I had a lumpectomy with no removal of lymph nodes).  I started my menstrual cycle very early (age 8) and at age 51 I was still having regular periods, so my oncologist made a chemo "cocktail" that would also send me into menopause. And I am still dealing with that as well. I visited my oncologist in September and asked could chemotherapy have caused this issue and of course he said "No" and also went on to say that Fibromyalgia is a "Garbage Pail" diagnosis when they can't figure out what is wrong with you. But Praise be to God I now know I am not alone.  Thank you!

I had some joint pain before chemo from an old injury.   Noticing I wake up achy everyday now, knee and today elbow.   I used Baxyl before for the joint pain and just went and bought a new bottle at the health food store.  Hoping it still works well.  It's expensive but worked well for me.

beefjerky said:

I too am experiencing joint pain ten months after I finished chemo. I had six months of 5fu and leucovorin. I wonder if anyone else has joint pain from this chemo.

5FU, that was my chemo drug. I think I had leucovorin as well.  Now I'm stuck with knee pain.

NoTimeForCancer said:

catsrule, I can tell you what

catsrule, I can tell you what I and you can take it for what its worth.  After my treatments I asked my sister to help find me something as I wasn't sure the glucosamine things would work. 

She saw that "eggshell membrane" was supposed to work.  I had to give it a try and within 3 days I felt immediately relief.  I found it at the Vitamin Shoppe, $25 or so a box.  I took it for about a year I would guess and decided to go off and see if the pain came back.  It really never did like when I first had chemo. 

I just throw it out there because it helped me, but everyone is different.

Thanks for this. I'm going to give it a try!!!

-j

Sannong, I certainly hope u have found an answer!! 

I am so sorry you had to be put thru all of those tests! And I hope you are Better! Some GPs/ Family practice know there stuff with post cancer Care, 70% according to several mail out studies do not. Why would they? The aromatase therapies esp. FEMARA! causes all of those symptoms and more! Go to www.askapatient.com search for Femara or whatever hormone therapy u are on! Some of side effects go away. Joint pain can be helped mild exercise, bike, swim, anything low impact. The Other drugs in that class as Femara más be less. Femara has been shown to decrease metástasis 30%! So  to treat side effects as much as posible! 

After 5 yrs u can switch to Tamoxifen but it does Not have as Good as stats.

weazer said:

living with joint pain long after chemo (WHY)
I am so glad that I took it apon myself to try to find out if anyone else was suffering like me.
I went to my Onc yesterday for this reason and I'm set up for another bone scan on the 12th of April.
I'm six months out of Chemo and radiation....and my pain started right at the end of treatment and is getting gradually worse.
However now I have hope that I wont be crippled from this because I will try to exercise more and keep with it, I was discouraged because after a walk or even really doing some house work I would feel worse.
But you have given me hope and I will try to put an excercise routine together,
I'm a triple negative Breast cancer survivor and that in itself is frightening to me because of the lack of knowledge on how to treat it if I should have a reacurance. But it it what it is, and I'll be 51 in a week and I'm truly looking forward to regaining my strength and to concure this pain that I have, my fingers are a little bit better but my wrists elbows, hips and knees are aweful.
Thank You so much for giving me hope.
Weazer

Dear weazer, The oncos know some but not all. 

Exercise does help. The Pain is Not from chemo, it is from the Aromatase drugs, there are 3, I am on Femara And it has very Good stats to decrease metastisis 30% decrease. Most try to stick it out for the normal time 5 yrs. But it is Hard for many .As of now there r no studies for longer Use . So Tamoxifen being easier MDs switch to that. I am IIIc ILC so motivated but if you Go to www. Askthepatient.com. you will see the reality for 50%+ , some that rate 5 still suffering but hoping! good Luck pass the word! For soñé they Go off " ruin life" I have MS too so some effects are doubled. 

evemcqueen said:

Joint Bone Pain

Dear Briestarr,

You can read my story further down the page but yes, I am experiencing the same type of side effects you are and I can assure you that after much research on the internet, as well as a report by Brian Wiliiams on NBC Nightly News a couple of weeks ago, the joint/bone pain is a result of chemotheraphy. Research has now proved it according to the Nightly News. I began experiencing the same type of pain after many months of chemo. On Sept. 8, 2008 I was diagnosed with Stage IV Her2 Positive Breast Cancer. The left breast had a tumor so large they could not remove the tumor without chemo for many months. Finally in May 2009, after taking chemo every three weeks for eight months, they were able to perform a radical mascetomy. Sometime in that time frame like you, I began experiencing extreme  "bone pain", the only way I knew to describle it. Realize now it is joint and bone pain. We are now in May 2014 and I am still suffering from severe pain in my back at my bra line, my legs, my shoulders, you name it... anywhere there is a joint. I was in such pain that I discussed it with my oncologist and he basically thought I was crazy or I had fibromylias. I began researching the internet to see if there were any other women out there that were going through the same thing I was and to my amazement, there were tons of complaints and it seemed everyone was of the same thought. This had to be a direct effect of the chemotheraphy. I researched fibromyasia and according to the research, opiates do not help fibermyasia. The doctor had prescribed opiates for my pain and they worked so this told me I did not have fibermyasia. The aching, throbbing pain would have me in bed for days on end..It has now been six years and the side effects are still here. You mentioned your shoulders were the worst. That is how mine also started out. My shoulders ached so bad I would be in tears. Eventually, every joint/bone in my body hurt severly. It moved down my legs, my ankles, my wrist....and then worse of all... now my back at my bra line. When mentioned to the doctor, he shrugged me off saying he didn't think chemo was the cause although he didn't have an answer. I encountered that not only from my oncologist here in South Carolina, but also at MD Anderson Cancer Center in Houston Tx. where I was born and raised. I spent three years there, getting chemo every three weeks until the struggle and pain was so much I quit the program and returned to SC. I suffer from fatigue very easy and cannot even hang clothes out on a clothes line for more than 10 minutes before my back starts throbbing and aching so bad I can barely stand it. Vaccuming, sweeping the floor has the same effect on me. Although I am on pain medication, it is not helping. I was 53 yrs. old when diagnosed and now...six years later... I feel as though I am 85 -90 years old. I wish I could help you but the only thing I know is that I literally live with a heating pad on my back. That helps.. The best way I use to describe the pain is that I feel like the TINMAN in the Wizard of Oz that has been left out in the rain for a few years. I used to be on a 100mcg patch for pain but they didn't last three days and many times they would come off (they were on my back) at the pool or beach and I wouldn't realize it until it was too late to find it. The two days that they lasted did give me great relief from the pain but you can only get those filled every thirty days so I finally asked to be removed and given a pill. I can't say that the morphine 60mg morning and one at night really help. I got great relief from the 15 mg because when I am in dire pain, I could take three or four of those and gosh, it would allievate the pain within 20 minutes or so but my doctor took those away from me last month for whatever reason I have no idea. I was able to manage the pain to the point that I could at least get out of the house and work in my flower beds and even go for a short trip to the store but that has now changed. Most days find me in bed. The worst thing for me but as you know, when you are in pain, get the heating pad and lay down. I honestly believe the doctors know about these long-term side effects but if disclosed, a great many of us would have rejected the chemo. I know I would have. Quality of life is much more important than quanity. I am sorry for you and will say prayers for you. I do believe in the power of prayer and may God help you and comfort you. Brenda, you can contact me anytime at evemcqueen@yahoo.com . I will give you my number and although I can't take away the pain, I can certainly be a friend during the rough times. God Bless You.

Eve 

 very sorry for your pain! Hormone therapy can cause to- Go to 

www.askthepatient.com type in your drugs to see others. 

evemcqueen said:

joint pain after chemo

In 2008 I was diagnosed with Stage IV Her2 Breast Cancer. Tumor was so large that I had to undergo chemotherapy for several months before a radical mascetomy was performed. Left breast removed and 27 lymph nodes. After surgery, I spent then next year and a half on Chemotheraphy Herceptin. Shortly after the mascetomy, I began experiencing extreme joint/bone pain. Started in my shoulders but over time has spread to every joint in my body. This has impacted my life severly. When I complained to doctor about it, they just shrugged it off as if it was nothing and they couldn't imagine why I was having this pain. The pain was so intense that I was put on the patch 100mcg to help with pain. Patch was supposed to work for three days but reality is... only lasted two days and even worse I would often find the patch was gone, having come off after bathing or a day at the beach and wouldn't notice until pain started setting in. Of course, insurance (medicaid) is not going to allow a refill before 30 days. Finally, so fed up with the patch, I requested pain relief in form of pill and have been taking 60 mg extended relief morphine with 15 mg morphine for breakthrough pain. I cannot even vaccum the living room and my bedroom or hang out clothes on the line without it causing pain so I would take three or four of the 15 mg  and it was working great for me. Last month, my doctor pulled the 15mg from my medication list. I could not believe it and was very upset because it relieved the pain within 20- 30 minutes and I could manage to get a little more done in a day. The doctor has instructed me to take the 60 mg. once in the morning and then again at bedtime. I have NEVER used pain medication and feel it should only be used if I am in pain. I feel the doctor is creating an addict because now if I don't take the 60 mg in the morning, by mid day, I am having withdrawal pains.Breaking out in cold sweats and barely able to do anything but lie in bed or on the couch. This makes no sense to me whatsoever. I want to make the point that when I started having the severe joint/bone pain in my shoulders, elbows, wrists, legs, ankles,back (really bad) the doctor tried to tell me I had fibromyalgia. I had researched the internet extensively trying to determine the cause of my pain. One thing I learned was that opiates do not help fibromyalgia so it wasn't possible that was the cause of the pain because the patches and the morphine definitely relieved the pain. I am extremely frustrated because when you mention this pain to the doctors (and more than one) they refuse to acknowledge that the pain could possibly be from chemotheraphy. It was only after reading many stories such as the ones on this page that I discovered I wasn't the only one suffering with this. Approximately two weeks ago on NBC Nightly News, Brian Williams announced that research has revealed some types of chemotheraphy has long term side effects, the chief complaint....bone/joint pain. I am now in the process of trying to find a new pain management doctor due to the fact that obviously he doesn't understand how intense the pain is and his response to my complaint is that " I must be overdoing it and to slow down"! That is in direct opposition to the advice that the leading Pallative Care Expert in the United States, Dr. Buerra,employed by MD ANDERSON CANCER CENTER has told me. I was under his care for almost three years before returning to South Carolina. He directed me to make sure I got at least 45 minutes exercise per day, that it was imperative if I were to get better. Basically, Dr. Dunbar of South Carolina where I reside and returned to after three years at MD ANDERSON is not only creating an addict with the manatory dosage of morphine morning and night but also by taking away the 15 mg of morphine for break-through pain, it is not possible for me to get 45 minutes of exercise per day due to the pain. Something I also failed to mention is that upon my return to SC (he was treating me prior to my transfer to MD Anderson) instead of keeping the prescriptions down to as little as possible, he has prescribed a variety of other drugs that I have never taken and don't care to take. One of them I tried, knocks me out for 12-14 hours and upon awakening, I feel as though I have been run over by a Mac truck. I cannot understand why he feels the need to fix something that isn't broken. As I mentioned , I have never been on pain medication in my life and feel that the less pain medication I take, the better off I am. Am I just crazy thinking, why take 60 mg morphine in morning if I am not in pain at that time and even if I am, it is extended release so it takes so long to kick in that half of my day is gone and then take another 60 mg at night, whether I need it or not? My common sense tells me that I need a strong enough fast acting pain medication to take WHEN I start hurting real bad. I would aprreciate any and all feedback on my situation. I give thanks to God for those of you that have shared the joint/bone pain I have been suffering with for almost five years. I know now that I am not alone and I am certain the chemotheraphy has caused this condition which has basically stolen my life. As you know, it isn't even possible to go to the grocery store shopping because within ten minutes of shopping, my joints/bones start to ache and within 30 minutes, I am back at home in bed due to the pain. I used to be very active. Planting flower beds, camping, fishing, riverrafting, etc.. all of those things are no longer possible. If I had known the pain and suffering I have been experiencing since taking that chemotheraphy, I can assure you I would have opted out of the plan and left it in God's hands. Thank you for taking the time to read this and I pray for help and feedback. May God Bless You and heal you.

 

I am reading your post thinking with every line, this is me!!!!  I have had the same reactions from doctors.  This is not being addressed by the medical field.

I hurt every day and every night, my pain started 9 months after finishing surgery, chemo, and radiation.  It hasn't stopped since September 2014.  I feel like my body is deteriorating right before my eyes and no one understands.  I am 44, I have 3 awesome boys and all I have energy to do is work 40 hours a week and that takes every ounce of determination I can find!  I would give anything to have help and my problems to be addressed, at least recognized.  My quality of life it deteriorating and I am fighting, but there is something new everyday.  We just want help!!! There was help, thank God, when we were diagnosed with cancer, but where is the help dealing with the after effects????!!!!  Doctors want to say I have fibromyalgia, I guess that's an answer when they don't know what it is!  Fibromyalgia medication doesn't help one bit, it's NOT fibromyalgia!!

I am praying for you and other people in our shoes!!! Something has to be done about this!!!  I have been to so many doctors and specialists and not one of them will even discuss the possibility that my chronic neck and back pain and osteoarthritis is related to my treatments, even though most of my pain is in my left upper back, exactly where I received radiation....hmmmm?

I hope and pray our voices will be heard, because we do matter, you matter!!!!

God bless all of you!!!

I finished treatment almost 5 years ago.  Chemo to fight TNBC along with a bilateral mastectomy.  My body aches now more than ever.  Recently, my right hand gets numb most of the time.  Saw my PCP and she ordered lots of lab work.  It's worse at night.  Also, when I get up after sitting, my upper leg joints, hips maybe, are so stiff and painful that it hurts to walk.  I'm 45 years old.  I hope these lab results can come up with a clue.  Frustrated with this pain.  The lowest part of my back was searingly painful this week as well.  I looked up some bone names and it seems to be where the iliac crest is located. Horrible pain.  

My Chemo was back in 2006, I was healthy as heck until after chemo, I finished chemo in Dec of 2006, before end of 2008 I had to have both hips and both knee's replaced, Severe back pain,ankle shoulder,wrist pain 24/7.. Most recent (last couple months) MRI's show screwed up disks in my back, Docs wants to operate on both my shoulders cause MRI's show torn ligiments and tendins in both shoulders also doc want to scrap the shoulder joints\ball's from enlargemnt from arthitis.. Arthritis spurs on most my finger joints, Ankles both show damage and are SO painful to walk on much most days..  Even after joint replacements, replaced joints have become crazy painful not long after they were replaced.. grinding, locks up all replaced joints show arthritis build up all around the replaced joints I swear are worse now then before I let them replace them.. I live on 120mg+ of morphine daily plus other pain meds and anti-flammatories and arthitis meds... oh by the way i am a now 48yr old male but feel like I am 85..  I was told for years chemo usually doesn't cause arthitis.. BULL !!! but now my newest neorologist does say it causes issues like this..  I have had EVERY test under the sun to see if they could find any things going on with my body and ALL tests always come back negative.. I was a software engineer most of myt working life so not like i put my body through major physical work daily like construction work or anything.. I had testicular cancer that had mastastisized to my stomach causing multiple tumors some 3 inches on my lyphnodes in lower stomach area.. I had chemotherapy no radiation.. but chemo was 5 days a week 5ish hours a day then would get 2 weeks off before doing it again over and over.. So after reading so many other of you having joint issues and pain after chemo just continues telling me what I have said to my docs for SO long, I felt fine and NO issues before chemo then SO quick after joints are gone how can it NOT be from the chemo when they would say chemo usually doesnt cause joint issues and arthritis.. Again BULL !!!  I know I need to be happy and thankful I am still on the green side of the grass seeing they gave me a year or so to live without treatment but I just wish Onc's would get on the ball and let patiants know about this possibility and maybe even give something that may help protect joints or something if they even can do anything to help this long term side affect..