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!!!
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.
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
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
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.
Joined: Jul 2012
how long did it last?
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.
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????
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.
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 :)
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.
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.
Best,
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 :)
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.
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.
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,
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 :]
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