Is it normal to have bad joint pain after chemo treatment has finished?

I had my 7th ( and hopefully last) chemo on 7th December for Stage3 disease with no visible disease seen at surgery in September. I am due for my end of treatment CT scan in 2 weeks, check CA125 in 2 weeks and first review appointment with my oncologist mid-February. Thereafter I am on 3 monthly revieew(all being well).

Sine Christmas I have had really awful back, hip and knee pain which is intermittent but very painful and although I have arthritic joints anyway which are worse with the cold and wet, I have never had such pain as recently. I am now starting to worry - is this this a worsenin of my arthritis, is it something else entirely, is it chemo-related or does it mean that the cancer is back???

It is starting to get me down now. I am seeing my GP on Monday but am not hopeful of a satisfactory answer as she will probably just tell me to go back to the hospital .

Has anyone else had bad joint pain after finishing chemo ? If so, does it ever go away ? I have been waiting to start feeling better but instead feel like a really old woman who can't do any normal activities due to hip pain.

I would really appreciate any help you might be able to give.

Thanks a lot.

Barbara

41 Replies

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  • Hi Barbara,

    Sorry you're having such pain, but; yes it is my experience too. The first year after chemo I was at the chiropractor every month with tendoitis in every tendon in turn, pulled muscles, bone aches, etc. I think it is a combination of chemo damage and menopausal pain and discomfort.

    Of course, you should check with your medics, but frankly, they are very bad at diagnosing and treating skeletal and muscular problems, and tend to give nastier and nastier pain killers which I was loathe to accept. I found my chiropractor was wonderful - and is still my preferred consultation for pains lumps and bumps. He can tell me if they are muscles, nerves and mis-alignments, and dispell the fears I've had about recurrence.

    Very best wishes,

    Isadora.

  • Yes, it is my experience, too, to have such joint pain after chemo. I still have it - it is almost nine months since I finished treatment. I am taking cod liver oil and Glucosamine Chondroitin (have I spelled that correctly?!). I think symptoms have improved since taking these. Good luck with finding your solution.

    Sara

  • Hi Bunty!

    Me too! The oncologists keep saying the knees giving way and the hip and back pains are nothing to do with the chemo but I did not have these pains before. I refuse most painkillers except paracetemol & ibuprofen as codeine makes me sick, tramadol gave me horrendous dreams and I did not like diclofenac either! I am currently suffering additional aches in my ribcage near the spine! Like Sarah I take glucosamine whith chondroitin. I was already taking that for a mildly arthritic shoulder. It took a couple of months for me to notice a difference but it does help and when I have stopped taking it while in hospital I certainly notice the difference.

  • I have just remembered that I got (and still get) great relief from the 'ladycare magnet' - sugested by other users of this forum. It's worth a try and made a huge difference to my sleep as it stopped the night pains almost entirely, and cut down the night sweats, too!

    I.

  • I seem to have missed details of this magnet Isadora. Where can one get one and how is it used?

    M

  • Bunty, Sorry to read of your pain after chemo. For me, I had no chemo and still got these horrific pains in all my joints and extreme fatigue. I took part in a study via Stanford Uni in US about Cancer Fatigue and Pain and this really helped me come to terms with the pain I had and still have. I don't know medically what causes the pain but I suffered for months and was scared to death - whether mentally I felt more positive and was therefore able to cope with it better or it just eased I will never know. I had blood tests done and had various checks by my GP and Ong but they simply put it down to the Cancer Op and were unable to offer any assistance. So it is not only those who have chemo who have after effects of cancer but I can empathise with you 100%. I go to the stage where I actually thought I was making them up but I know I was in so much pain I couldn't get out of bed some days even tho I wanted to.

    Must have a look at this magnet too :)

    I am sure you will feel better soon hun - take care of yourself and try to think positive - not easy when you have had cancer but worth a try.

    Sheila:)X

  • Hi Bunty , we`ve just been chatting about this over the last few days. It certainly does seem that joint and muscle/nerve pain is a nasty side effect from the chemo and sometimes it worsens as time goes on before iot gets better.

    The stearoids that we take as our antisickness medication will map the adverse effect that chemo has on our joints and muscles/nerves but then after the chemo finishes it all hits us hard with avengance or so it seems in most people.

    Please do not worry about this OC hardly ewver goes into the bones (Thankfully), I wouldn`t like to say never but it would be rare.

    Because chemotherapy is extremelly toxic - and toxins will always attack our wekest area such as the ones we are talking about or/and our energy levels if we suffer from chronic fatigue pre the cancer then we are sure to after the chemo.

    Ask for a better medication - I found tramadol has helped me through the wrost part of it.

    Love T xxxxx

  • Why has no one told me this been worrying so much. Thank u.x

  • Hi Buntyb It is 3.5 years post treatment and I had chemo and radiotherapy for womb and ovarian cancer. I still find i am not as I was before but much improved. My pain seemed to be in all my joints but I used the magnet bracelet and have only just stopped usinbg it recently because I felt so much better. The pain does get better but you need a help in hand while you are waiting. Good Luck.

    Lucy1dog xxx

  • Hiya where do you get a magnet braclet from and how much are they please thanks x

  • Thanks for all your comments - it's interesting to hear other prople's experiences.

    Regarding the magnet - it states that it helps with menopause. I have been menopausal for nearly 20 years now - presumably it won't be of much help to me for my joint pain?

    I already take Glucosamine ( and have done for years) so don't think that will be helpful just now.

    Barbara

  • Well, we all learn something new everyday on here.

    I had no idea that magnets help with the menopause.

    As some of us are now sergically menopausal, like me and finding the hot flushes simply awful I am going to give the magnets a go. So thanks for that tip!

    I have already cut out caffeine which has made quite a big difference but I still don`t want the heating on, even in this frosty weather.

    It makes a change for hubby to be the one freezing cold because pre-cancer op, I would have heating on to the max, gas fire and a blanket rapped around me. Now, heating off and a whooly jumper is even too much warmth for me.

    Hay ho, I tell hubby we are saving on our heating bills, LOL!

    But realistically is hasn`t been much fun.

    Thanks with love from Tina xx

  • my knuckles have grown so much I cant get my rings on or off and my knees hurt when I bend down cant get up easily.Also been diagnosed with carpal tunnel syndrome.My onchologist said chemo proberbly speeded up onset of it. The things we suffer? but I make light of it and laugh just glad to be clear of oc for now lol Jenny xxx

  • Just had a second thought, as these joint pains are effecting some of you who did not have chemo. I wonder if its the trauma of the cancer that may have triggered early or earlier onset of arthritic conditons. Stress and trauma to the body both emotionally and physically can often trigger these things and we have all had a huge shock to our system emotionally without all the other nasty business. Just a thought!!!!

    At first my oncologists seemed to poo poo, the joint pains, but now they tell me its side effects of the chemo.

    Reading how this is effecting some of you who didn`t have chemo but still suffering with joint pain it made me stop and think. Maybe its a touch of traumatic stress disorder, the symptoms are similar to those of ME and Fibromyalgia. How do I know? because I have suffered from both of these conditons for the best part of 15 years and they are so not nice to learn to live with, however thats all we can do leanrn to live with them.

    PTSD (post traumatic stress disorder) also known as GULF WAR SYNDROME are just another name for the same thing. Most people diagnosed with FMS and CFS/ME have history of trauma.

    I never had this intence joint pain pre-cancer treatment and this to me does feel different HOWEVER, if trauma/stress triggers these other conditions then maybe it does arthritis too (if it is arthritis pain that we are experiencing) and thats a strong IF!

    Taking age into consideration too - maybe the cancer has just given us an early onset and we would have developed these arthritic symptoms soon anyway.

    Will it improove over a period of time? Well, again I think our age may have something to do with whether it will or won`t, only time will tell I guess, but hay we are still breathing girls and that we have to be grateful for, don`t we just?

    Now to the point of - how to treat it? How to learn to live with it? What can we do to help ourselves?

    You can buy an electric heat pad to wrap around the joint to ease the pain or if something cold is better a wheat?barley bag kept in the fridge may help.

    Medications long term are not good and some are adictive as well as having some side effects.

    The only thing that helps my pain when its really bad is tramadol, other than that I may as well swallow smarty`s.

    If a pain killer does not work, don`t take it. If you can manage without then when you really do need pain meds they will then seem to work better.

    Be aware of pain killer headaches, some of them especially those with codeine or ibruprofen in them can cause what is known as perscription headaches and they can be so severe they are scary.

    Failing this - ask your GP to refere you to the pain management clinic at your nearest hospital. Ongologist may be able to refere you if you ask.

    Hope this is helpful

    love from Tina

  • You hit the nail on the head! Liked the wheat/barley cold compresses. My Rhumatologist and Oncologist treat me like I am a crazy person and am overly preoccupied with my arthritis and feet pain/numbness/tingling after Chemotherapy. I had arthritis pain in my ankles and feet before the chemotherapy. Now I have osteoarthritis in my hips (hip x-Ray and cotta steroid injection today ) and I believe neuropathy in my feet. I have had to suggest to my GP and Rhumatologist that I try gabbapentin (sp?) I am so exhausted as it is AND I am having to "play doctor" as well as continually follow up with them when they don't respond to me in a timely manner! They seem to forget I am in constant pain. Also having hot flashes again, long after they have stopped. But, back to work and teaching I go the end of August! Lord help me!!!! 😖🙏

  • Hi Jenny,

    I also suffer from joint pain in my fingers and my knuckles also very swollen. I was close to having my rings cut off but I have 5 stuck there and its almighty expensive to have them repaired and made bigger, the higher the carrot of cold the more expensive, 2 are 22ct gold the others 18, so I abandoned that idea for now.

    The wedding rings cut into my finger and bleed some times, they itch too and can be sore all at the same time. I have gained 2 stone in weight so maybe thats half to blame too.

    I know this is off topic but anyone else struggle with weight gain? I feel that carrying the extra 2 stone on my joints is not helping my hips and knees but can`t seem to shift the weight.

    I can lose a couple of pound then gain it back for no reason at all.

    I do feel if I could shift the weight then my rings would not be as tight even if the joint is still swollen.

    I have to shoot now as my daughter is coming round soon to highlight my hair, I`ll probably start a new thread later girls so watch this space a little bit of HAIR talk coming up real soon.

    take care and have a nice day - chat with you all laters

    love from Tina xx

  • Hi BuntyB

    I finished chemo at the end of July 2011 and was ok for about the first month or so. In October, I developed 'trigger thumb' in my right hand and then started having dreadful pains in my feet at first which then spread to every joint in my body. I do have arthritic knees but hadn't had any other pains or problems like this before cancer and chemotehrapy.

    My GP felt as I did that it was chemo related though he did test for thyroid and also took x rays of my hands. The oncology department however disagreed that it was chemo related and implied that these symptoms were psychosomatic - really helpful! I asked this forum (bless them all) and also googled so took 'evidence' with me at my 1st follow up at which the oncologist agreed finally that it was chemo related but extremely rare (I only had carboplatin). I pointed out that as he had told me my cancer was rare, perhaps my side effects were too!

    I take cod liver oil only but no pain relief and haven't tried glucosamine. I force myself to walk every day to try and loosen everything up and it definitely helps. Like you, I felt like an 86 year old woman, especially in the morning and if I sat for any length of time. I am going to ask my GP to please test for Vitamin D as I'm told that can affect joints.

    However I am pleased to say that in the last month there has been a step change and the pains are now not so bad. I still have tendon pain and pains in my knees and shoulders and the thumb is now completely stiff and won't joint - but it does all seem to have improved a bit.

    Recovery from cancer treatment is slow and I have had to learn to do as told and to 'pace' myself. I have found that if I do too much and try to go at 100 mph, I will 'fall over' and the pains will seem to come back with a vengence- bit like a virus/bizarre!

    by the way, my GP prescribed clonidine for hot flushes/night sweats and the are definitely effective.

    You are not going mad and with all the wonderful advice on this forum, hopefully you will feel some relief soon.

    Best wishes

    Eleni x

  • I, too, experience severe muscle/joint pain & fatigue post tratment. My gyn/onc seems to ignore these concerns. I know I should be happy just to have survived - for now - but, it's really difficult when the pain stops me from enjoying life. I'm two yrs post treatment and it just seems to get more difficult. As time passes I get more depressed and I know that only makes things worse, I was very athletic before and wish I could tap into my old source of determination and spunk to overcome these circumstances as I have always been able to in the past. I don't like that this feels like a pity-party as I haven't been one in the past to follow that path. I hate being such a downer and especially appreciate the audience reading this. May we all endure and survive and live to see the days that this terrible thing called cancer is iradicated ! Thank you for being there to let me share my story. Tamara

  • Tamara,

    I just thought I'd mention that the lady who posted this is no longer with us she died on the 06-02-2013 it might be best to check the date before you post and only reply to recent posts in future.

  • I work generally with physical pain... mostly joint pain. I had a lady come in with extreme pain especially in her ankles, knees and hips, but really almost all her joints. She had had breast cancer. Her breast was removed and she was given chemo. She wouldn't let me work on her pectoral muscles the first session... where the most extreme pain was (she couldn't lift her arm). I was able to eliminate all her joint pain the first time and the next I worked on her pectoral and she gained full range of motion.

    What I think is that the chemo affects the fascia, which is the tissue that surrounds each muscle and muscle finer and organ. Here's an excerpt from a website I'm creating:

    "Fascia is a film of connective tissue that envelops groups of muscles, individual muscles, and the individual muscle fibers. It organizes the body through an extensive webbing of layers, creating a complex three-dimensional network that weaves around and through all the structures of the body. This web protects and supports the organs and skeleton as well as helping the muscles in movement of the body. The quality and structure of this tissue is affected by a person’s lifestyle because it responds to stress, physical exercise, trauma and patterns of posture and movement.

    Healthy fascia has a high percentage of collagen, the lubricant between muscles. Pliable and elastic, it enables fluid interaction between them. But the texture and composition of fascia can change with stress and injury. The collagen, normally a lubricant in healthy tissue, becomes more glue-like in unhealthy tissue, forming adhesions and impeding muscle movement. Unhealthy fascia can encase the body like a straightjacket by contracting and become thicker and less elastic, restricting muscle function or visceral movement. This develops so gradually that one is not aware of it until the contraction is released. "

    So, what I think happens is that the chemo damages the fascia, but stretching it in the correct manner can change it immediately. At least in this woman's case it worked like magic. It might be that some of the chemicals are trapped in the fascia. By stretching it, blood and lymph begin to flow and clean out those areas also.

  • Healthathand,

    I just wanted to say that do you think before replying to any post you should first check the date? this post was written two years ago and the lady that originally wrote it is now deceased (BuntyB Barbara died on the 06-02-2013) so your advice will be no longer of use to her.

  • Hi Gwyn,

    I have read twice from you that this woman had died, and it is a bummer. I don't think her dying makes this information less useful. She left us a gift by writing her post! The information IS useful to many of us out there, whether she is alive or not. If anyone can add to the subject, more power to us!

  • The people who are replying to the deceased woman's post are really helping other people who are alive with the same issue. So the date is irrelevant.

  • And PS I'm sure the deceased woman would be happy she is helping so many people. Those that were close to her don't have to read it if it bothers them for some reason.

  • Hi Millie, As odd as it may seem, there is plenty of information on the net about 'the fascia' relating to human tissue. I can't personally verify any of it, but a quick google should give you some idea of what its about. I first heard of it when I was searching for Avastin and the side effects.

    Hope you're well

    Andy x

  • Millie and Andy,

    Regardless of whether healthathand is right or not this post is two years old and BuntyB (Barbara) died on the

    06-02-2013 love x G x

  • Sorry. I'm only speaking from my own experience. No source other than that. My techniques have been developed from Rolfing and Trigger Point Therapy. I hate to see people suffer from things that are easily resolved. It's two years old. I'll bow out. Excuse me.

  • The thing is as I already mentioned further up that the person you are replying to is dead she died on the 06-02-2013 (so it really won't help her) and you'd be better looking at the date first because this can be upsetting to us because we have lost friends.

  • Bye

  • Hello, Gwen. I'm sorry. It sounds like you were hurt by my posting and causing any one sadness or pain was the furthest thing from my mind. The thing is there were many people on that thread that had questions about pain. Please note that I did not mention any one's name in particular. It was really just a contribution on that particular subject and was not intended to be "addressed" to the originator of the thread. This is a difficult journey for all of us. Please try to appreciate where I was coming from. Blessings, Tamara

  • Dear Tamara,

    If you read my original comment to you, I in no way suggested that you were being unkind I was merely informing you of the circumstances of the thread you were writing on, the fact that it is two years old and although the original poster is no longer with us this could be true of other people on this thread that have commented too ( that they are no longer here)

    Also because it is two years old and by the nature of our disease then these people would have moved on from this (as have I being diagnosed nearly six years ago) so the pain that you are offering information on would now be solved... I am sorry you took this personally and missed my point.. that it would be better to comment on posts that are more recent thus being more relevant to the people still around ( at the same time the original posters family or loved ones might receive notification of a message and potentially stir up old emotions...

    This is something that many of the older members on here are trying to stop... I take it that you are a new member so the purpose of telling you this.. was not to upset you but to inform you.. that it would be wise to check the date of posts.

    Do you not think that I know already what a difficult time we are all having, being diagnosed myself with an incurable disease means that being sensitive to others is first and foremost in my mind.

    Best wishes love x G x

    Ps I am sorry you are having a hard time and of course I understand where you are coming from ...I have had OC three times now and the treatment to try to hold this back.

  • Be well. Peace, Tamara

  • Gwyn,

    Of course no one wishes to offend or hurt anyone, especially since the author of this thread has passed away.

    However, this does not make her original question or problem invalid to those of us who follow after.

    I found this thread by chance, after desperately being treated like a junkie or drug addict as I sought an end to dreadful bone and muscle pain that has left me bedbound most days.

    The impact to me physiologically was profound, with doctors treating me either with a baffled look (if they were kind) or rudeness by saying it was in my head. This all stopped when finally my doctor sent around a nurse to assess me in my home environment and she was shocked at how I was living. I had 5 dose dense chemo sessions for a rare and very aggressive breast cancer and though the cancer has gone, so has my life with this unbearable muscle and joint pain

    As you can see by the responses in this thread, we need to support one another with information and kindness and though the dear author has passed on, the issue unfortunately for many of us, has not

    Thanks

  • Nylani,

    We may be twins separated at birth. I was treated for very aggressive triple negative breast cancer, six sites: Fred, Wilma, Barney, Betty, Pebbles and Bam Bam. I had five months of chemo, surgery, and radiation. The neuropathy started about midway through chemo, but it was only in the last weeks that it got so bad they had to postpone chemo for a week. I had a heart scare and a whole host of the other side effects that are more or less expected during DCT chemo. NOTHING prepared me for the muscle and joint pain and weakness that started after the steroids wore off. Last winter I would get out of bed by slumping off onto the floor and then pull myself up using the furniture. There was a period where it was so bad I had to ride the cart at the store. I hate that. If I buy anything it sits in the car until it absolutely has to come in. Then it sits somewhere on the floor until I use it or break it tripping over it. I've never been a neat person, but I have always been a clean person. All of this has fallen away. It hurts to sit, sleep, walk. Sometimes, even showering hurts. I look like a giant wrinkle when I go to work. When people look at me strangely I feel like joking how lucky they are that I am wearing clothes. Almost nothing fits because I can't get rid of the weight I gained during treatment. My oncologist, who I dearly love otherwise, tells me it's because I must be eating too much. I hate to tell him, but I am too tired to eat everything he thinks I must be eating. I live in a town house. My neighbors can't understand why I can't shovel snow. People think because my hair has grown back that everything is great, just like I never had cancer. Thank you for sharing your story. I feel much less alone. Sherry

  • This really helped me! I thought everything was back to normal as I gradually got my energy back a month after completing chemo. My "normal" lasted about two days! I too started having horrible joint pain - hands, wrists, shoulders, knees and ankles. That lasted about two weeks and now it is mainly in my hands - I look like an old arthritic! I can't straighten my fingers. If I do too much, the other joints flare up again. I am encouraged by reading posts from others that this may improve with time.

  • I have just come across this topic from googling about joint pain, I have read that the original author has sadly passed away, but as a person that has ONLY jUST found these post I am one person that is happy that people have continued to post on the topic, as finding out I am not the only one suffering pain, and that I am not the ONLY one going through it has helped me tremendously I was diagnosed with breast cancer in early 2013, had surgery, chemo, radiation treatment, given the "all clear" after it all but continue to take Letrozole medication each day and have to continue this up to 5 years post treatment, now I had mild arthritis before all this happened, but now I am in constant pain, ALL my joints hurt, I get muscle cramps too mainly in the evenings, I am also getting strange cramps in the muscles at the front of my neck which is really weird, I actually thought I was going crazy as I had been given the all clear. so I just want to thank those that posted(even if its an old topic) as now I know its more common and that eventually I may get to a point that the pain eases. thank you everyone.

    MO

  • I am also sorry to hear that the original poster passed away, but I am also relieved to read this thread and realize that I am not alone in feeling joint and muscle pain, fatigue, and temperature sensitivity. Post cancer treatment is a very lonely place.

  • I have arthritis in both knees and also developed trigger thumb about 6 months after finishing carboplatin. The oncologist also told me that it wasn't chemo related - but I never had any of these things before either. I have joint pain in my hips, my elbow, my thumb joints and my shoulder. These may all be age related but I believe that they have been exacebated by chemo; it's as if it attacked everywhere that there was a weakness. I've found that I get muscle cramps during the night and my feet and hands get extremely cold too.....

    The only comfort is knowing that I'm not alone and others feel these things too.

  • P.S. Glucosamine definitely helps and and my G.P. also prescribed chlonodine to help me sleep and ease the 'fidget legs' I get at night and they work.

  • I am so grateful to have found these posts. I have had R-CHOP, 6 sessions, chemo and finished in Dec 2015. ( non-hodkins lymphoma) , I have bone and joint pain to such an extend now that I find it hard to cope at all. My onc-doc seems to not know what to say, but I know it must be chemo related as I had NO pain before chemo..I am in clinical remission but my pain; Knee, hip. shoulder blades, wrists is just so so painful..Its now almost 7 months since last chemo and the pain isn't going away..I am wondering if anyone can tell me: Does it get any better with time?

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