living with joint pain long after chemo (WHY)

Tethys41 said:

Joint Pain

I had joint pain for about 8 months following chemo.  Then I started to realize that many people seem to experience this and I also started to realize it was probably a symptom of autoimmune conditions.  I'm pretty convinced that chemo or cancer triggers autoimmunity.  RA is an autoimmune condition.  The best thing I've done for myself is to go on a diet to control autoimmune symptoms.  I learned about it in the book, "Autoimmune: The Cause and the Cure."  Almost immediately, the pain was gone, my digestion improved, and I had lots more energy.  The bonus is that this type of diet is also an anti-cancer diet.

its not great to see how many people suffer from this issue but sharing information helps us all cope. Ifinished chemo in nov 2012 and after 6 weeks started to get pain in my right hip. during treatment old backpain resurfaced but this stopped soon after treatment. I have never had leg or hip trouble but now it wakes me at night and is bearable without medication during the day. I do walk and exercise but struggle to lose weight. I am amazed at the lack of medical recognition about this problemwhen so many seem to suffer from pain. Will try the book on auto immune above. Thanks to all for input and ideas as ther is a certain comfort knowing I am not alone. I also love the picture of the blue rose, my Dad died of cancer and he used to grow blue moon roses, sweet memories.

nikkinmiss said:

4 months post chemo and drugs

4 months post chemo and drugs used were Taxol and Carbo for stage 1A Ovarian cancer(Granulosa Cell Tumor) I am fine down cancer wise but I am being crippled by pain in my joints, mainly my hands and legs. my hips are awful, my shoulders are now being affected and I am unable to sleep most nights because that is when its at its worse. I have a hard time describing the pain in my hands its almost like they are asleep but still painful jointws but half the time they sting like ants are eating at them I take very large does of Neurotin which helps but does not help the joint and bone pain. just looking to vent because Doctors don't even want to listen, 

I am so happy to find this!

I am 2 months post high level RAI for stage 4A thyroid cancer with 2 lymph nodes thrown in there. I had surgery in Jan to have my thyroid removed, then RAI in Feb to try and burn out the remaining 2 spots on my lymph nodes (I have no idea if that worked they told me I won't know for 3 years.)

I have been going insane trying to understand what has been happening to me. Since the surgery I have been having episodes of extreme muscle fatigue/weakness/pain and joint pain. I can't even fold 1/2 a load of laundry without my muscles siezing up and shaking. It hurts so bad my mouth waters and I can't do anything but wait for it to pass. I can't walk up stairs without need to rest 1/2 way up and again at the top. My episodes are mostly confined to 1 side of my body, but the joint swelling is everywhere. When I lay down at night my pelvis feels like it is grinding against itself and I wake up with the same pain.

The doctors treat me like I am crazy and tell me I expect too much out of myself and it could take a year for me to feel "back to normal again." My question to them is....the farther away from treatment I get shouldn't I feel better NOT worse! They also told me I should return to work and normal activity but I can hardly function.

I have been to the RA doctor who put me on prednisone, which I had an allergic reaction to, so he said there is nothing he can do for me now.

I am so happy to find this post because this is not the norm for treatment from radioactive iodine and I haven't been able to find anyone in a thyroid group who has the same symptoms. I don't know why they can't tell you things like this will happen to you. The little energy I have I really don't want to spend having to research what is happening when they could just tell me this "might" happen, or that others have reported the same thing. I think if it were them would they be happy with the answers they are giving me. Is it so hard to say they don't know....thanks for the vent :]

lizalv said:

Joint Pain long after Chemo
My cancer was non hodgkins B cell lymphoma. All lymph glands throughout my body. I originally had (6) treatments of Vincristine, Cytoxan and Rituxan.

My last chemo treatments were in September of 2011. My oncologist has scheduled me for rituxan once every other month for the next two years as a maintenance program.

I too have developed joint, muscle and what feels like bone pain everywhere. In my hands, fingers, lower back, legs, knees etc.

I'm making my doctors crazy, as they all have no explanation for my symptoms. I am schduled for an emg with a nuerologist next month. I am sorry to hear you too are experiencing these symptoms. I will let you know if any explanation comes my way. Thank you for sharing.
lizalv

Just did the nerve conduction test as well.Sounds as though we are on the same path includeing Doctors making you feel like a hypocondriac.Actually mine are now turning it around and blameing me.Calling it depression and over use of Hydrocodone.I have no history of abuse and same regimend for years.Nov.2012 severe allergic reactions to treatment w/Bendamustine/Rituximab.Shortly thereafter Something attacked myENTIRE body everything cracking severe pain cramps numbness tingleing ended up in wheel chair and ltemporary loss right arm.Limping now but grateful.Very weak w/grinding.Loss of balance.Almost undescribable the feeling in the joints.Your discription is best! I allways say feels like something missing in there and ligaments I think are doing something too.I have Severe spinal stenosis,lumbar radiculopathy,OA,NHL small B cell indolent follicular 3rd stage.Hoping for remission next month! W/History Guillan Barre syndrome.I am 43.Feels like 83.I am going crippled.Im wondering if this is permanent???? Last chemo March.22 2013 How are you doing? Arthalgia Perhaps? Love n Light

briestarr said:

Joint Pain/Triple Neg also
This is crap! Sorry... that is how I feel...
Triple negative here also, and in pain in knees, elbows and worst, shoulder!
It seems it is all on the affected side... anyone else have any other information about after effects of chemo? I had TAXOL the last 4 sessions. I had 8 sessions total. I am only 50 and this is NOT what I had planned... I hurt. and now, I know I am not alone.
email me if you have any suggestions. beebear1961@yahoo.com

Brenda

Ihad chemo june 2007..first 4 sessios..2 1/2 hrs..final 4 sesions 5 hrs each..then I had a double mastectomy & complete hysterectomy..then had 6 weeks of radiation..I was 42 yrs old @ the time..I swear to you..the chemo has **** me up..now @ 48 have RA ..major joint problems..my husband passed away 7 weeks ago..I have found so many people on the internet that have the same side effects as I do..it didnt happen rite away..Im talkin 2-3 yrs after chemo..I really want to do something about this..I've been in the dental field for 30 yrs..cant work now..is there anyone out there interested in helping me do a bit of research and if we can get enough people who had chemo & the side effects didnt hit them for @ least 2 yrs..You all think I'm full of ****..well I'm doing my 2nd application for disability with a lawyer..got denied the 1st time & my appeal got denied..I went to Res HS got a full ride to Loyola..I'm pretty dam smart.& if I can possibly win a lawsuit for me..why cant I file a major 1 for all of you....

jyoung said:

Oh my gosh....I finished my Chemo a few months ago. All through my treatment and radiation my joints were giving me so much pain.Now worse.Only in my hands and elbows, shoulders. I have a hard time gripping my purse, drinks ect...aches. I am shorted of breath now. I do not like this at all. My Dr. said they will run blood work they did this today. I hate it. I am not on much here. But anyone feel free to to email me. I am 47 female with One breast removed in Dec then the other removed 6 months later.I would like anyone emails also. jyoung56@wwwebservice.net

jyoung, I'm Peggy..5 yrs ago diagnosed with stage 3 breast cancer..also tested positive for brac1..so had a double mastectomy & complete hysterectomy(@ 42) I've had major joint and bone pain since 2 yrs following chemo..I now realize I'm not the only 1..I worked for 30 yrs & cant now..my RA and fibromyalgia is so bad I applied for disability..got denied..appealed..denied..so now I have a lawyer..my husband passed away 7 weeks ago suddenly of a heart attack..so what I would like to do is if I win in court..file a major suit against the drs who treated us..I was never told nor in writing the effects of chemo a yr or 2 later..I know chemo saved my life..however..I really cant do to much..I feel helpless..I'm so weak..have tried to work out(that was my life before cancer)..but my joints are so bad

Just found this board and thought I'd weigh in with my problems, too.

I was diagnosed with breast cancer in July 2012.  Had lumpetomy, 4 rounds of chemo (taxotere and cytoxin), and 35 radiation treatments which finished up in February of 2013 and now taking arimidex for the next 5 years.  After my 3rd chemo treatment I started having pain in my bones and joints.  Onco adjusted my 4th and final chemo dosage but it didn't seem to help.  The onco had me discontinue the armidex for one month but that didn't help anything so I resumed taking it.  Also, had bone scan which showed nothing.  Now 6 months later I am going to see a rheumatologist today.

I am very active, walking, biking, riding horses, and occasionally yoga in addition to working everyday.  I am 55 years old and not overweight (5'3" 122 lbs); but I feel like I'm 90 years old.  All of my activity does nothing to help with the pain and after reading all of the responses here I feel like my visit to the rheumatologist is a waste of time, effort, and money and that I am doomed to this pain from now on.  Like all the others I have the stiff fingers and toes, the bottoms of my feet are sore to touch, my shoulder on the side that I had the radiation KILLS me, and if I sit for any length of time my butt hurts all the way down the back of my legs.  When I try to tell anyone what's gong on I feel silly saying my fingers and toes hurt.

I'm thinking maybe I'd just be better off taking the money I will spend on doctors and meds and just get a good muscle massage.

dixieEQ said:

Pain After Chemo, Too

Just found this board and thought I'd weigh in with my problems, too.

I was diagnosed with breast cancer in July 2012.  Had lumpetomy, 4 rounds of chemo (taxotere and cytoxin), and 35 radiation treatments which finished up in February of 2013 and now taking arimidex for the next 5 years.  After my 3rd chemo treatment I started having pain in my bones and joints.  Onco adjusted my 4th and final chemo dosage but it didn't seem to help.  The onco had me discontinue the armidex for one month but that didn't help anything so I resumed taking it.  Also, had bone scan which showed nothing.  Now 6 months later I am going to see a rheumatologist today.

I am very active, walking, biking, riding horses, and occasionally yoga in addition to working everyday.  I am 55 years old and not overweight (5'3" 122 lbs); but I feel like I'm 90 years old.  All of my activity does nothing to help with the pain and after reading all of the responses here I feel like my visit to the rheumatologist is a waste of time, effort, and money and that I am doomed to this pain from now on.  Like all the others I have the stiff fingers and toes, the bottoms of my feet are sore to touch, my shoulder on the side that I had the radiation KILLS me, and if I sit for any length of time my butt hurts all the way down the back of my legs.  When I try to tell anyone what's gong on I feel silly saying my fingers and toes hurt.

I'm thinking maybe I'd just be better off taking the money I will spend on doctors and meds and just get a good muscle massage.

 

 

HI.  I just read the last two entries.  I had rads (mega doses my onocologist told me at one time) back in 1980.  Total nodule radiation from bottom of chin to groin area.  Let's just fast forward.  I was 21 at that time, in my 40s I started noticing pain; numbness, tingling, burning, pinching, electrical shocks down my legs...took docs 7 years and they thought I was crazy, but finally found a broken vetebra (after how many scans I lost track, they never saw it).  So I had fusion in 2003 and 2006(it blew out).I also have SVT, Heart issues, that I take meds for and doc keeps an eye on. (Over these years I've had many docs think I was crazy and was making this all up.  They should just say "don't know what's wrong with you" instead of saying we're crazy. 

  So it's now, and the pinching, etc., is in ALL my limbs.  I have found helpful articles and support from others on here.  I will tell you what I learned.  Damage from rads and chemo is irreverible as we know.  Kills good cells too.  In the past two weeks I have started making calls to all my local (st louis area) cancer hospitals to ask if anyone is familar with Radiation fibrosis syndrome (goggle this and most articles will be by Dr. Stubblefield in NY).  Quite interesting and I swear I fit the mold after I've read them and watch videos.  This might be the case with those that only got chemo.  So over 5 years I've been seeing pain mgmt which gives me steriod shots for the fusion, but this is all new to him in arms.  as I said I have just started calling local hospitals and am getting some luck with places with new departments that deal in palliative care.  New to me, but I'm going to try it.  I recently had an MRI of head, neck, and thorasic.  Also have had bloodwork and lower MRI of back. EVERYTHING IS NORMAL.  The last neurologist says this is radiation damage.  He sees no other disease.  Back in 1980 I didn't have much of a choice.  So I have survived and had two children even though they said I may not. I'm now 54. I do feel your pain and I wish you all luck in finding someone to help you deal with pain (I have tried all drugs possible, my neuro told me  I have tried all the ones I listed for him, he said there's nothing new so nothing else to give me to try).  He truly believes it's all rad damage. So I wish you all luck and hope you can find someone in your area that is familiar with helping with the late effects of rads/chemo.  God Bless you all.  Have a great day.

Graeson5682 said:

Dear Bullfrog,
Thank you so much for your comments. I have been looking for some answers re: joint pains that keep me up at night. My last chemo was only a month ago, so I guess I should have more patience. But I don't want to just keep taking pain pills forever.
Like you, I gained weight when they put me on steroids (Prednisone). I am now off the steroid but the weight has not come off. I really would like to get rid of the weight and manage the pain through excersize rather than drugs, if possible. Can you recommend an excersize routine for a beginner?
Thanks again. You've inspired me. Hope you are still feeling well.
: ) kate123

Ten years later and I now have hip pain. The doctor says it is most likely due to the prednisone (steroids). I never had radiation to the hip area. I had over 30 tumors in my chest and neck so I am not sure if I go for the prednisone suggestion but maybe!

colzee said:

joint pain
I have been reading all these posts about achy joints & muscles. I did chemo & had 4 surgeries & was thrown into menopause. I feel like an old lady somedays because I get so stiff. I have been using a natural supplement called Hyaluronic Acid which restores the synovial fluids in your joints & it is a miracle worker! When I run out & go for a week or two without it, I become "crunchy" and stiff again. I go to a local health food store & they are sooo helpful. They asked me if I felt like the Tinman & that was exactly how I felt. They recommended the Hyaluronic Acid & it has worked incredibly. It can be found at Vitamin world & I think Gnc too. I hope this helps some of you Survivors out there!

I was told by my Onc that when chemo put me into menopause, that it depleted the estrgen from my bones, causing the jont pain. Hmmm. My hips, knees, elbows and thumbs are most affected with the knees being the worst. My hands are weaker than before also. I take Glucosamine and a baby aspirin daily and try to stay active and exercise reguraly. I find that sitting, inactivity causes joints to hurt more. I am going to my GYN (Who has also gone through breast CA) and will ask if anything else can be done, because I don't like feeling like an old lady! I will also look into Hyaluronic acid, as you suggested.

briestarr said:

Joint Pain/Triple Neg also
This is crap! Sorry... that is how I feel...
Triple negative here also, and in pain in knees, elbows and worst, shoulder!
It seems it is all on the affected side... anyone else have any other information about after effects of chemo? I had TAXOL the last 4 sessions. I had 8 sessions total. I am only 50 and this is NOT what I had planned... I hurt. and now, I know I am not alone.
email me if you have any suggestions. beebear1961@yahoo.com

Brenda

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