joint pain long after chemo why?

shannong
shannong Member Posts: 2
edited March 2014 in Breast Cancer #1
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!!!

Comments

  • momof4
    momof4 Member Posts: 56
    #2
    shannon i get joint pain now and than after a chemo treament sometimes it wakes me up in the middle of the night but i only get it the first few days of my chemo i'm not sure if it is the same thing as you are experiencing but just in case it is the chemo i am on CEF.
    Hope i was of some help
    take care HUGS
    Mariat.
  • debw
    debw Member Posts: 99
    #3
    Was it Taxol? I had joint pain for months after and thought it might be the tamoxifen. After 2 years only the feet are a pain.
  • 24242
    24242 Member Posts: 1,398
    #4
    I spent 2 years getting my diseases, which were side affects from all the treatments. Joint pain nerve ending pain and arthritis a couple of kinds. I am sorry to say that this happens to those of us who are very sensative beings. I think there is like a less than 4% chance of this happening if not even 1% for most of the problems I have encured.
    Now that pain has been addressed with several meds and alternative therapies I am better able to cope in the real world. I am even back working something that didn't look possible 4 years ago and not to say I haven't had other problems along the way. You need check into Dr. Payne that use to be featured on this site. I blieve he was a Micheal and pain specialist like one I have been seeing for the last 5 years. I think they are the ones who have educated themselves and mine had traveled around the world so was open to so much more.
    At one time my pain was completely controlled with Morinda Tahitian Noni Juice but had a sick spell over year ago and had to go back on the medication along with methadone. Once again I live a fairly pain free existance with a few more side affects along the way. Not sure what I am going to now just know I don't like suffering, pain as an affect on the body that is worse than the pains itself. Body kicks back when in pain 24 hours a day. Does something to the mind and makes it difficult to turn the switch off once it is going. Sort of like tricking the brain so it isn't thinking it is in pain when quite likely you aren't in pain now. The mind gets stuck in pain mode and soon you can't get rid of it. why it is so important to control pain from the start.
    It doesn't help if you have a doctor who doesn't believe in certain things like fibro myalgia with the irritable bowl and fatigue with arthritis often what that entails. I know of some myself and quite frankly when there is evidence and it has been proven to be a problem then they should have to be open to it. I have found doctors too busy thinking that women just are weak and complain of pain. More often than not it is because of something if they would only look.
    This has been my experience is all and hope that you wouldn't dare have to go the same road.
    I fought to be helped and after 5 years I am a far cry from what I was left with. The Noni has done things that no medication has been unable to for some of the pain. YET it hasn't been a cure all either something I had been hoping for. I have tried to go off it too because of the cost but can hardly get out of bed without so keep on chuggin away. Now I take amatryptoline, neurontine,methadone 2.5 ml and some migraine meds at times. The odd time I have to take something for nausea to get out of that mode too. Much easier when didn't need the meds. In this day and age we have to control the pain so that we can carry on with this life we are suppose to be living. I am so glad I fought this far, because it is getting much better along the way. I just believe that living is hard work and I put one foot in front of the other somedays the best that I can do. We have to educate ourselves to be able to help ourselves along the way, willing to try anything almost including getting rid of the vises. I still have one or two to go. Quitting was the big one for me since I had been smoking since such a young age.
    Be good to yourself, since that is something we do the least of. Usually we are too busy doing for others, that we don't even rest as much as we should, even with the cancer. Eat for nutrition!
    Tara
  • inkblot
    inkblot Member Posts: 698 Member
    #5
    Hi:

    Don't know whether my situation relates at all to your own but here it is:

    About 4 mos. following chemo, I began to develope a great deal of pain in my wrist. My onc. denied that it was at all related to chemo. My orthopaedic specialist, however, said that it was not an uncommon side effect of chemo.

    Treatment was splinting, ice, heat, NSAID's, cortisone injection. Nothing helped for very long. Then my left hip began to feel very sore and tender. X-rays of everything showed nothing. Meanwhile, wrist became worse and I developed a trigger finger on my right hand and later, also developed a trigger finger on my left hand, although I had no left wrist pain at all.

    Finally, surgery was my only option. This involved release of the trigger finger. Not a big deal. The wrist tendon sheath, which had become inflamed, (and in turn inflamed the tendon which goes up to the elbow) had to be scraped away and a nerve had to be rerouted as well. I recovered quickly and well with no lingering problems and the pain is gone. The off and on hip pain went away of it's own accord after a few months. Ortho. doc says that the chemo can irritate every tendon sheath and nerve in our bodies on some level if we're particularly susceptible. What feels like joint pain may actually be from tendon's around the joint instead. A synovitis. (stylo teno synovitis, to be exact, in my case. Also known, in the wrists, as DeQuervains)

    Currently, I am concerned about having surgery on the left hand to release the trigger finger because that is my bc surgery side. The ortho doc is consulting with my surgeon, as well as several other speicalists to try to determine the best approach to this lingering problem. Risking lymphedma may not be worth it. Fortunately, it isn't very painful. What WAS painful, was at surgery when they had to insert the IV line into my ankle! Big Youch. They couldn't place it into the side where the surgery was being performed and since they didn't want to use my bc side, that was the alternative site. If you've never experienced IV's in the feet/legs, I most assuredly don't recommend it.

    Love, light and laughter,
    Ink
  • karbear
    karbear Member Posts: 163
    #6
    Shannon, I also experienced this all over pain, joints and muscle well after chemo was over . The doctors kept saying it was still from chemo, but now its been a year and half and I'm still achey, tired and have no energy somedays(most days) They sent me to a rheumy and I was diagnosed with Fibromyalgia. which they say can be brought on by a tramatic event in your life...hmmmmm.i'm thinking breast cancer would fall under that category....It is a feeling of Hurting all the time, joints and muscles!!! Best of Luck to you ,hope you can find out whats causing your pain...God Bless, Karin
  • whesha
    whesha Member Posts: 3
    #7
    karbear said:

    Shannon, I also experienced this all over pain, joints and muscle well after chemo was over . The doctors kept saying it was still from chemo, but now its been a year and half and I'm still achey, tired and have no energy somedays(most days) They sent me to a rheumy and I was diagnosed with Fibromyalgia. which they say can be brought on by a tramatic event in your life...hmmmmm.i'm thinking breast cancer would fall under that category....It is a feeling of Hurting all the time, joints and muscles!!! Best of Luck to you ,hope you can find out whats causing your pain...God Bless, Karin

    I don't know why it helps so much to know that others are suffering too but it does. Not that I don't wish you all relief, in fact I pray for it. I finished chemo (5fu and leukovorin) July, 2003 and shortly aftwards I felt like I had been beaten up in a back alley. I still ache all over and have very sore hands with weakness. I feel so very tired most of the time and while my spirits have generally been good through all this, it is starting to get me down. I saw a rheumatologist who told me he believed it was the result of chemo and put me on Vitamin B1 a few weeks ago. My hands feel a little better but are still painful, especially my thumbs. My oncologist denied that it could have anything to do with my treatment!!!! I'm grateful to those of you who wrote about this problem because I really did feel alone with this pain. Good luck, everyone. Sharon

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