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living with joint pain long after chemo (WHY)

Posts: 2
Joined: Jun 2003

joint pain 9 months still after chemo (WHY)
Message: I finished chemo approx. 9 months ago and towards the end of chemo I started developing joint pain in the hip. Now the joint pain has spread to every finger joint,my toes,ankles,knees and wrists. Docters have no explanation for my pain. I have had MRIs, pet scans,bone scans,& CT scans of everything and everything is normal. Have been checked for avascular necrosis. Have been seen by neuro doc,endo doc, rheumo doc, and every other doc there is. They can't explain why I have this
excruciating pain. Has anyone gone through this? I
need help from anyone that has gone through this and found some answer. Or ideas of what I should have doctors look for that they already have'nt.
I am stuggling everyday with this pain. Tomorrow
doc is checking my bone marrow but could still be a dead end. Was diagnosed with autonomic dysfunction in 1996. Docs know this but they seem to think not related. Please help!!!

bluerose's picture
Posts: 1104
Joined: Jul 2009

Hi Daniel. That is the first time anyone has said anything about dehydration and I know I am horrible at drinking water so this is my wakeup call. Like Ron I have a host of other issues like lower back disc degeneration but my arthritis and fibromyalgia don't help and it makes perfect sense that hydration could in fact make things worse. Duh on me. lol.

Thanks for posting that, I'm sure this is going to help.



mm91174's picture
Posts: 6
Joined: Nov 2009


Hondo's picture
Posts: 6494
Joined: Apr 2009

Oh also please don’t tell me that I will have this stuff hurting me for the next 25 years. I will need a large supply of medicine..

Well Oh :+))

Posts: 3
Joined: Oct 2011

I agree with Hondo... I hope this pain after chemo isn't long term. My fingers and legs are stiff and in pain all day long. Has anyone had relief from bone pain with exercise? I finished my last round of chemo in August and the pain started three weeks ago.

Hondo's picture
Posts: 6494
Joined: Apr 2009

Bone pain is something you will need to find what works well with you I use Tramadol HCL 50mg with Tylenol three times a day and feel great all day long. Tramadol is a very light pain medicine as I don’t like the hard stuff that you get hooked on.

PS: Also welcome to CSN


Posts: 3
Joined: Oct 2011

Thank you, Hondo! I see my oncologist next week. I will discuss the matter with him. Thank you for the welcome. I wish I would have found this site sooner. There is so much to learn.

Hondo's picture
Posts: 6494
Joined: Apr 2009

Same here my treatment was in 2003 and 2004 I did not find this site till 2009. I stay here mostly on the Head & Neck site to help other like me just starting through there treatment in hopes it makes it easier for them to know what to expect.

Wish you well next week on the doc visit

Posts: 1
Joined: Dec 2011

Thank you! I thought that I was the only one experiencing joint pain. None of the medical staff that I've encountered through my cancer treatment hinted at the possibility of joint pain. Ankles, feet, hips, finger joints and the shoulder on the side of the breast cancer surgery and radiation and now the back of my neck started 2 days ago.

It feels like I have loads of toxins in my body and I don't know how to get rid of it. When I wake up in the mornng, it feels like the toxins have settled in my fingers and my feet. I feel better when I get going and keep moving. Today, I feel very despondent. The doctors make it seem like after cancer treatment, you just bounce back and everything is back to normal. They don't seem to care about after treatment problems. They don't collect data from sites like this one, to better prepare their patients. They don't even consider that joint pain, for instance, could be a consequence of cancer treatment. Why? There is enough evidence on this page to suggest a very very strong link.

I am going to find a way to rid my body of every last bit of these toxins causing such havoc. I cannot be 40 going on 90! That is no way to live.

Thank you all for sharing. Now I know that I'm not alone and that I'm not going insane. Onwards to a pain free 2012.

Muschi's picture
Posts: 85
Joined: Jan 2012

Aneesa this is for you and I know it will work. Drink a lot of veggie and carrot juice (you have to use a good juicer, if you are interrested I will give you the name),add one apple with either juice for the taste. Drink the juices once or twice a day do also an coffee anema twice a week. The reason I know it helps is because I did the juicing one year before the chemo and I felt not too bad during also that time, never threw( wrong spelling? Sorry I am German,haha)up, just felt a little under the weather. The reason for that was I got my body cleansed of all the toxins before I had in me and so when the chemo dumped all the new toxins in my body it was long not as bad. When I am finished with the herception treatment I will do the same again. I have a little join pain in the morning when I get up but as the day goes on it is getting better. The weird thing is my thumb on my left hand is giving me the most trubble. It is very stiff sometimes and than it is all ok again, weird!
I hope it will help you also, I am sure it does!

Posts: 1
Joined: Jan 2012

I, too, am suffering pain after chemo that ended 10 months ago.It is also a problem in my fingers and shoulders. My heel and hips were especially bad. I have been diagnosed with tendonitis in a couple of places and burcitis in my hips and arthritis in my fingers and shoulders. When I was diagnosed with breast cancer, I was coming up on needing my second hip replacement. I was 50 years old. I had arthritis going in to this treatment in my hips and spine but never in my fingers or shoulders. That said, I suffered 0 arthritis pain while being treated with chemo. Probably due to the large quantities of steroids pushed through each chemo day. After treatment, pain was soooo bad. I have tried physical therapy, motrin therapy and steroids. All helped while I was taking them. I, now, am following the advice of Dr. Andrew Weil (On-line). He has an anti-inflammatory' diet. It is helping some. My fingers and shoulders are back to normal after a couple of days. My bursitis is gone and my heel feels better. I gave up sugar in the way of candy, ice cream, marshmallows and white rice,bread,sugar. I have been a heavy sugar eater. I have also increased the food and teas that he has recommended. I don't think anything is wrong with my knee joints but the tendons above my knee caps have been a problem too. I have had some relief with this diet, I am hoping for more as time goes on. I'll post again if I get ahead of all of this with my new diet. I have found some of this 'anti-inflammarory' diet on Livestrong as well. I have read ehough to think that the pain may not come from the chemo but as a reaction to the massive amounts of steroids we are put on while being treated. Maybe they need to take us off of those more slowly.

Posts: 165
Joined: Feb 2011

I have the same joint pain that everyone else has posted about. Our stories are different, but we all had chemo, steroids, rituxan for various lengths of time to kill "cancer". these poisons we are pumped full of also attack the "good" too. that's common sense.

I got relief from this joint pain unexpectedly when I was on pain killers after emergency surgery June 2011. I was painFREE for two weeks after the pills ran out, when I decided I'd spend a sunny summer afternoon mowing the lawn. each step was stiff and painful. The pain was back.

Jan 2012 The pain is worse after riding in the car. the low vibration from the car floor for only 1/2 hr ride has caused the ankles to lock/stiffen and I'm an old lady getting out of the car.

The poison that attacks cancer, also attacks the ligaments similar to the aging process. I'm 54 and have empathy for my 86 year old Dad as he gets out of my car, after riding for an hour his legs and feet have stiffened up, and as he attempts to "warm" them up, he waddles into the VA home. The chemo has aged me 30 years sooner than I wanted, but I'm a survivor and I will do whatever it takes to make for a better quality of life each and every day with my husband of 33 years. Life is Good, I just wish it could be a little bit better.
Dx March 2010
Remission July 2010 thru Present

Posts: 4
Joined: Aug 2005

Hi Tricia,

I was having increased joint pain for the last 5 months and i thought it was just arthritis so i pushed it off until it was gettig so severe i had to walk for hours to wear myself out so I could fall asleep. My oncologist thought i was nuts so i was sent to rheumatoid eventhough all lab work came back normal. I saw him today and explained the severe pain to where if it went on any longer i would amputate both my arms above the elbows because the elbows were so painful. after his exam he told me i have "restless arm syndrome", exactly like restless leg. the restless elbow he said is from anemia and i am severe anemic. I was shocked. so i am on requip now and will start tonight. i thought it was very interesting and wanted to share


Posts: 4
Joined: Mar 2012

Yes, this was interesting. thank you for sharing. Have you had any relief?


Posts: 1
Joined: Feb 2012

This is so interesting. My 11 year old son had chemo for stage 3b rhabdomyosarcoma alveolar for 2 years and radiation for 6 weeks. He was on vincristine, iphosphamide, cyclophosphamide, etopside, actinomycin and adriamycin. He has been cancer free for exactly 5 years. Woo Hoo! However he still gets really horrible muscle cramps. He is very active but feels very sore regularly. Each time I mention this, the doctors say the drugs are out of his system now. So why does he still get them so often?

Posts: 4
Joined: Aug 2005

Hi everyone!
I was diagnosed in 2004 with non-hodgkins lymphoma and went through 6 rounds of CHOP and it still didn't resolve the large node in my chest cavity plus CHOP affected my heart function that i wasn't able to continue that. I then received 2 rounds of ICE which still didn't help. in 2005 i underwent a stem-cell transplant and luckily i was able to use a research drug and was able to use my own stem cells. I am coming up on my 6th birthday and within the last 5-6 months I have noticed an increase in joint pain, mainly elbows but sometimes knees. I shrugged it off as arthritis and possibly rheumatoid. all my lab work came back normal for inflammation factor and all rheumatoid. The pain has now gotten so bad I would seriously think of cutting my ars off above the elbows just so I wouldn't be in pain anymore. The pain is getting worse and now starting to feel like the bone pain i felt during treatment. I have found out that this is a bad side effect and there are so many different types of treatment so my oncologist has referred me to a rheuatoidologist so we will see how that goes. the pain is awful. it feels like there is something inside the joint with a fist full of muscles and ligaments and twisting it then letting it go. after investigations the only thing i have found out is is that it is due from the chemo affecting the tissues and fluid within the joints. As soon as i see a rheumatoid specialist i will definately post their recommendations

Posts: 4
Joined: Mar 2012

Your explanation is exactly what I am experiencing. My doctors too looked at me at if I was making this stuff up. Thank you, please keep in touch.

Posts: 4
Joined: Mar 2012

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.

Posts: 3
Joined: Oct 2011


How was your appointment? My doctors still tell me that the chemo should be out of my system. They can not explain why I feel this way.
I have been exercising with a trainer and I have changed my diet but I have found very little relief.


jazzy1's picture
Posts: 1387
Joined: Mar 2010

Something like this which entails arthritis and fibromylegia? All have lots of joint pain which sounds like what you're experiencing.

I had lower pelvic radiation (external) for uterine cancer and 6 months after treatments ended, started with pain in hip/lower back. Oncologist told me not cancer see your PCP. This has been on/off pain, so I can deal with it. See a chiropractor who has done no xrays, and his thinking sciatic issues which most likely means nerve damage. Radiation really fries the joints, bones and nerves which in end, cause pain.

It's a maze out there in the medical community, just never know what doc to go with first. I'll start with PCP for some scan and go from there...

Best luck to you all...

Posts: 2
Joined: Apr 2012

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!

Posts: 3
Joined: Apr 2012

I had Non-Hodgkins Follicular and Diffuse Large B-cell Lymphoma diagnosed in 2002. After six months of CHOP and Rituxan therapy I have been cancer free since. But I have had steadily worsening fatigue, muscle and joint pain and my short term memory is so bad, I need to write everything down, and then I forget to look at what I wrote.

I have had high dodes of Prednisone (sp) because of lung problems for a number of years. This led to joint deteriation so bad I had necrosis of the hip joints. I had them replaced. I fell after the second replacement and shattered my femur. Now after three months in bed or a wheelchair, I can walk with a cane or, for short distances, with no assistance. But the body pain is getting worse. I have exercise class twice a week for people over 50, I'm 63 now.

I wish somehting can be done about the body pain. Anyone have any ideas? I have tried Lyrica (edema limits me to one a day), ibuprofen (had to quite becaus of stomach problems, and I have an implanted pain pump. I also take Oxycodone 10 mg orally once a day.

Posts: 1
Joined: Feb 2013

I have just finished with chemo about 30 days ago and after every treatment the pain gets worse....I know neulasta causes pain after and that is not what I am talking about  I feel like I am going crazy, because I have explained this to my doctors and nurses and they just seemd confused. I am just glad to know I am not alone.


Posts: 5
Joined: Apr 2014

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.

NCaliNHLWarrior's picture
Posts: 8
Joined: May 2013

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

Posts: 3
Joined: Apr 2012

As I previously mentioned, I have had increasing body aches and pains since my R-CHOP treatments in 2002. Just recently, my blood test showed a deminished amount of vitamin D.
I have taken vitamin D supplements (2000 IU, or 50 mcg) every day for two weeks. It has helped some in lowering my body aches. FYI

Posts: 1
Joined: May 2012

I just finished chemo in March 2012 and I'm having incredible knee pain. It spreads to my muscle too. Trying to work out now is an issue as I am concerned about worsening the issue. I will try working out after reading what's shown here. Sometimes icing the pain can bring blood to the area to work out the issue.

Natural meds that might help: Glucosamine (if you are a man stay away from chondroitin as it may cause prostate cancer, though this has not been proven yet); glucosamine is already in your joints and if taken helps with cartilage damage

Also, Vitamin D is amazing for bone health. It helps treat several bone concerns as well as boosting the immune system. Most of us with cancer are probably not getting enough vitamin D from the sun so a little boost could help.

If you don't like meds, try finding vegetarian versions of the pills...or just work out as mentioned. Both meds are pretty natural if you buy the right one.

Any good therapy workout that builds strength in joints while working out will help not increase the pain and make the pain leave.

I hope this works for me! Glad I looked up the pain I was having. The doctors think my joint and liver pain was there before chemo. That should tell you something.

Posts: 1
Joined: Jul 2012

how long did it last?

Posts: 7
Joined: Sep 2012

i have been suffering from joint, bone pain, nerve pain in my hands and feet. sometimes i swell very badly in my feet. at times the pain is so terrible i can't walk. i have brittle bones as well. i have broken both my wrists and had to have surgery to fix them and i don't know where all the pain is coming from. please help i need help.

Ryu's picture
Posts: 2
Joined: Sep 2012

Hello and hope you all a speedy recovery!!!!

I have a gut feeling that the pathology of cancer as well as its treatment both independently trigger some of autoimmune symptoms that we all seem to be experiencing...yes? no? yes? no?

For years I had a lower back pain that disappeared as soon as they removed my sigmoid with an obstructing adenocarcenoma late march this year... And I am grateful to the surgical team for actually saving my life- sincerely..

But now, 3 months- after only two chemo sessions (2x 42 hour infusions folfox/ oxaliplatin) that I stopped due to painful side effects; at 49 years of age I also hobble around with painful sticky joints in hands and feet coupled with weak muscles.. have interrupted sleep due to painful shoulders,hips and legs feet and hands.. and experience chronic fatigue after the most basic activities. Swimming by contrast and anything water related is magic.. the pain comes back, but with a reasonable delay...

And then theres the bloating.. Like never before in my life...in under 3 months my wt has increased by 33.069339 pounds... arrrrrrrrgh..
I walk everywhere, run up steep hills, cycle if I can.., etc... especially since my resection.. But I can no longer do push ups or any of the stuff I did before the rheumatoid symptoms set in.. And I'm sure the weight exacerbates the pain.. I have some edema as well..

As for the whys and what was that about!!!?????? and how... my experience with medics- friends and those who treat me..like other professions... they are too frazzled by their load.. More importantly, they're trained to adhere to procedural protocol learned or dictated by drug developers. So they cut the cancer out, fry the cells with toxins or radiation or both et c'est tout. New symptoms? new drugs.. which unfurls a cascade of other symptoms no???

My question is.. do post cancer treatment/ chemo symptoms persist chronically or are they temporary?? I suppose time will tell????

JWren's picture
Posts: 12
Joined: Oct 2012

In 2001 I was dx'd with lung cancer. I had 2.5 years of chemo, radiation, and 8 surgeries. I had minor joint pain , I was told it was arthritis and spinal compression. In 2011 I was dx'd with breast cancer, surgeries and radiation thru 4/12. Every day since, the pain in my joints has become crippling. My right hip is so painful I can barely step. The doctors have never tied it to the treatments. Six doctor shave told me I have neuropathy, now a doc says no, it is sciatica. One doc refuses to treat me for pain unless I get off all my pain meds. (Huh?).

I have read every word of the above posts. For the first time I feel as if this all makes sense. I am not alone, nor am I crazy. I can only walk about 1000 feet before I fall apart. Now all I have to do is find a way back.

Posts: 1
Joined: Nov 2012

I am sorry to read what everyone is going through here, but I am also grateful to read this. Now I do not feel like I am crazy. I was diagnosed with invasive breast cancer in jan 2011, and finished chemo in April of this year. My joints hurt so much, and my doctors act like since I am not in treatment anymore, I just need to get over it. I also gained weight during treatment, so they blow off my pain as it is just from my weight.

I know that weighing more than I should adds extra stress on my joints, but I have always been overweight and this pain is more than that. I am only 40 and I have a hard time walking. Most exercise is out because I just cant do it- not even that I wont exercise through the pain- because i have tried, my body just won"t ( walk fast, dance, run, bike, etc.) The only exercise i was able to do was swimming in the pool, but now that is getting harder because of my shoulder pain.

I am in a job in the medical field that is fast paced and requires me to be on my feet all the time. Does this pain ever go away? What has every one else experienced?

It seems since radiation and chemo, I have trouble swallowing certain foods, and I have overall muscle weakness and joint pain. I am constantly getting tendonitis, bursitis and needing cortisone shots.

JWren , you are not alone. Hopefully, we can both find a way back. I get frustrated because it was a hard fight to beat the cancer, so when is it all over? When do I get to stop going to the doc appointments? Don't get me wrong, I am happy my cancer is gone, but the side effects are a pain- literally :)

Posts: 193
Joined: Nov 2012

I just finished chemo 2 1/2 months ago for colon cancer. About a month ago, I started getting awful pains in my shoulder joints and finger joints. It is difficult to sleep while laying on my sides and my fingers feel very stiff and painful when I wake up. I am 53 years old and feel like a 90 year old. It takes me a while to limber up but the pain is constantly there. I see I am not alone now. I go back to my Oncologist to get my second check up after completing chemo in January. I'll see if he can advise me what I can do but in the mean time, I will try to move around more and get more exercise.

I really hope this isn't a permanent condition.

Tim6003's picture
Posts: 1506
Joined: Nov 2011

..relax a bit.  I can't tell what discussion board this is on, but I post regularly on the Head & Neck board.  A fellow warrior saw my post about joint pain and provided me the link.

I as dx base of tongue w/ one lymph node invovled, stage III HPV+ back in October 2011.  I finished radiation in January 2012.  I did not have surgery, and I only had Erbitux with my radiation (not the traditional chemo drugs). 

Well Sept of 2012 I was out hunting, cutting 5 cords of wood (we use wood to heat our home here in Idaho) as well as snowmobiling / hunting deep in the back country (wolf & mountain lion).  I was and am doing great.  However, about two months ago my elbow joints started to hurt, along with my wrists.  As of this post I have just seen my onco who ordered a battery of tests, blood profile, x-rays and what not. She seems to be looking to rule out lyphoma and leukemia and thinking it is either tennis elbow or RA ....so I am waiting on results.  I

I did not call my onco or GP until the pain got so bad tylenol and advil / aleve did not do anything and I found I could not split my wood (the old fashion way with an ax)...

So finding this post has been somewhat of a comfort.


Just about two months after my last rad I had the hip pain and still do.  It's not crippling pain, but at night it's bad especially if I sleep on one side to long.  No other joint pain.  I spoke to my onco about it as you all did and got the ??? don't know answer. I attributed it to my dramatic wieght loss in tx of 70lbs, to date I am 90lbs lighter than I was before dx.

Then as I say, about two months ago the elbows, wrists and shoulders started to hurt / ache , but the right elbow is giving me fits.

So I share this with you all to compare notes, and hopefully this threat will make it back to the top for others.  If anyone can tell me the discussion board it is on, that would be great.

I pray the best for all you warriors on here ...thanks to all those who continue to contribute to the board...good stuff and it helps so many follks.



Tim6003  / Idaho

Head & Neck Cancer Survivor 14 months

Stage III base of tongue HPV+ w/ one lymph node

Proud father of five / blessed husband of one :)

Tethys41's picture
Posts: 1079
Joined: Sep 2010

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.

Posts: 1
Joined: Apr 2013

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.

Posts: 2
Joined: Nov 2012

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, 

Posts: 7
Joined: Mar 2013

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 :]


NCaliNHLWarrior's picture
Posts: 8
Joined: May 2013

I sure would love to chat. I read your post.Could've been me writing it!almost two monthes out last chemo. First chemo horrific experience was in wheelchair about a month walk w/limp now greatful!  But all is the same. Nerve muscle joints OUT OF CONTROL. N its a mystery. How are you?TY for your post. Email if you can @ glaunie@yahoo. Com.                Indolent follicular non hodgkins lymphoma 3rd stage. B/R. For treatment 

Posts: 1
Joined: Aug 2013

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.



Posts: 17
Joined: Nov 2011

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.

Posts: 1
Joined: Oct 2013

i  dont have an answer,but im also going tru the same thing as you  are.i think every doc i went  and see about my pain think im crazy.cause they cant find anything wrong with me.i am going to my second breast cancer and still in treatmeant.my first breast cancer was in 1996, since then i have had this right hip pain going down to my whole leg and feet.cant work and stand very long.i now use a cane to help elevate the pain in my hips.i am also applying for the dissabilty but got denied,so im in the prosses of appealing it.its so hard to live like this.where you cant work because of this pain.im like you hoping someone out there can tell us what and where and how to solve this pain problem so we can live our life much easy day by day take care and godbless

Posts: 1
Joined: Feb 2014

Thank you for sharing your story. I felt like I was going crazy too. I discovered my cancer on my 28th birthday, when I was 30 Weeks pregnant. My last year is crazier then and greys anatomy episode I've seen. I just don't understand why I still hurt. I finished chemo about a year ago.  I'm trying to excersice hoping it will start to get better. I don't know what else to do. I've had lots of tests. seen lots if doctors. I really felt crazy, until today. Keeping up with my family, and just got amother surgery date. Then it will be time to go back to work. I'm a nurse. 12 hour shifts. All on my feet. I'm a perfectionist. A seconde generation nurse. Terrified I won't be able to do it.

1SassyDiva's picture
Posts: 1
Joined: Oct 2014

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!

Posts: 1
Joined: Jun 2015

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.

shadow01's picture
Posts: 15
Joined: Oct 2008

I had what I thought was very harsh chemo for my first cancer in 2006 ... and it 2007, I had chemo that made that earlier chemo look like a picnic on the beach.  I've had joint pain throughout my body, and really bad in my left hand (one doctor told me it sounded like the onset of carpel tunnel syndrome, but that turned out to be wrong).  My primary care doc, who is also an internal medicine specialist, checked it out and referred me to a neurologist, who found nothing, but had me get an MRI (which was a total waste of a LOT of money).  Sorry, back on the topic.  The neorologist did all kinds of test, which all came up negative.  Sound familiar?  I finally gave up.  But after seeing the enormous number of posts here on this topic, the answer is clear:  it's yet another bit of damage left from the chemo (the one that really was harsh and caused pain th....let's skip that) and/or radiation.  Wonderful.  Well, at least now I know.

Posts: 5
Joined: Jan 2016

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.

Teashea's picture
Posts: 2
Joined: Feb 2016

Hello, Feeling like I needed someone to talk to that could really understand what I am feeling brought me to this site. This is very interesting to me because my Drs have made me feel like all this joint pain is a rare symtom and I am one of the few that have it. I had IL2 biochemo. It attacked every joint in my body. I now walk with a walker and limp. I am in constant pain. I take 600mg Votrient every night, it makes me sick daily. My family and friends do not understand, most of them rarely reach out any more. God I need to get out of this bed and live again I am just so tired. Sorry for the pitty party just feeling a bit down today.

CalliopeMaeve's picture
Posts: 1
Joined: Apr 2016

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.  


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