JOINT PAIN AFTER CHEMO

clr129
clr129 Member Posts: 10
in Uterine/Endometrial Cancer #1
I went through 6 rounds of carboplatin and taxol chemo treatments this past year. I finished in April and a few weeks later I began to feel extreme joint pain. My Doctor said it was probably because I had not been active during my chemo, but as I was reading on here, there are many people who have gone through similar problems. It hurts like crazy in the knees, shoulders, hips, buttocks and calves. When I sit down, it takes everything I have to stand and walk. I am now struggling to sleep because of the pain. Some of the discussions back in 2003 were people who dealt with this for years. I was wondering if anyone has any treatment they found to be successful in handling this pain.
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Comments

  • debrajo
    debrajo Member Posts: 1,095 Member
    #2
    I was prescribed
    I was prescribed hydrocodone, but enhanced it with three Motrin. Like my dentist tells me, take the meds BEFORE the pain really starts to take over. Seems that if you wait to take the meds til you really need them, the have to work 3x's harder control the pain. Talk to your dr. about the Motrin first. I know my body can handle a lot of meds, but some people can't. Best, Debrajo
  • debrajo
    debrajo Member Posts: 1,095 Member
    #3
    I was prescribed
    I was prescribed hydrocodone, but enhanced it with three Motrin. Like my dentist tells me, take the meds BEFORE the pain really starts to take over. Seems that if you wait to take the meds til you really need them, the have to work 3x's harder control the pain. Talk to your dr. about the Motrin first. I know my body can handle a lot of meds, but some people can't. Best, Debrajo
  • CindyGSD
    CindyGSD Member Posts: 190
    #4
    Aches and pains....
    I finished chemo in March and have been experiencing all kinds of aches and pains. I kept pretty active during my chemo so I don't think it is because of inactivity. Ibuprofen PM helps at night though I try to avoid taking it if I can. I plan on going on a strenuous hiking trip to Montana in June so we'll see if mind over matter works. One thing that has been really bothering me is my thumbs....especially the left one. I am having a hard time gripping things. All new since chemo ended.

    I hope this isn't the new normal for us. :o(
    Take care,
    Cindy
  • Peggy Davis
    Peggy Davis Member Posts: 7
    #5
    CLR129
    Hydrocodone totally gets rid of the pain for me at night & lasts a few hours into the next
    day but it makes me sleepy, & you can get addicted to it. I only take it once in awhile
    so I don't get addicted. During the day 800mg of Ibuprofen helps. Vitamin B-6 & Calcium helps I just heard too. Do you have bowel problems too? I got all the neuropathy & pain after the first chemo. Did you only get it after the last treatment? If so you are lucky.
    Good Luck! Anyone out there try Alternative Medicine for neuropathy? Fruits, vegies, & exercise help me to ease the pain.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #6
    Peggy Davis said:

    CLR129
    Hydrocodone totally gets rid of the pain for me at night & lasts a few hours into the next
    day but it makes me sleepy, & you can get addicted to it. I only take it once in awhile
    so I don't get addicted. During the day 800mg of Ibuprofen helps. Vitamin B-6 & Calcium helps I just heard too. Do you have bowel problems too? I got all the neuropathy & pain after the first chemo. Did you only get it after the last treatment? If so you are lucky.
    Good Luck! Anyone out there try Alternative Medicine for neuropathy? Fruits, vegies, & exercise help me to ease the pain.

    Peggy
    There have been many discussions about alternative treatments here. Try using the search in upper right to find these.
  • clr129
    clr129 Member Posts: 10
    #7
    daisy366 said:

    Peggy
    There have been many discussions about alternative treatments here. Try using the search in upper right to find these.

    not the neuropathy I went through during treatment
    When I was going through chemo, I would get leg pain 2 days after and it would last for about a week. My feet also became numb so I know what neuropathy feels like. However, this is not that. When sitting, I feel absolutely normal. It is when I get up that I experience this terrible hip, butt and leg pain. During my chemo, I never had problems with my hands also. I have read some of the other comments on this topic in the last few weeks but no one seems to have answers and doctors seem puzzled to. Many people got tested for arthritis, only to find out it wasn't that. I have also read how there doesn't seem to be any common medicine people take to feel better. The scariest thing is people who talk about having this pain for 10-20 years.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #8
    clr129 said:

    not the neuropathy I went through during treatment
    When I was going through chemo, I would get leg pain 2 days after and it would last for about a week. My feet also became numb so I know what neuropathy feels like. However, this is not that. When sitting, I feel absolutely normal. It is when I get up that I experience this terrible hip, butt and leg pain. During my chemo, I never had problems with my hands also. I have read some of the other comments on this topic in the last few weeks but no one seems to have answers and doctors seem puzzled to. Many people got tested for arthritis, only to find out it wasn't that. I have also read how there doesn't seem to be any common medicine people take to feel better. The scariest thing is people who talk about having this pain for 10-20 years.

    ????
    Could this be a side effect from radiation? Is it like sciatica? I know others with sciatica pain.

    Radiation can give "late effects" - things that show up along time after treatment over.
  • clr129
    clr129 Member Posts: 10
    #9
    daisy366 said:

    ????
    Could this be a side effect from radiation? Is it like sciatica? I know others with sciatica pain.

    Radiation can give "late effects" - things that show up along time after treatment over.

    Not from radiation
    I was fortunate enough not to need radiation. I also noticed tht any old injury I had has now come back with a vengeance. I tore a rotator cuf a long time ago and since all of this, it has been hurting along with a separated shoulder that never hurt but just started the same time all of this other pain did. I want to find something that works so I can pass it on to others. Researching this topic has been an emoptional rollercoaster because of the lack of knowing what works and what doesn't. I will try different things and post the results of everything I find. The medical community may not be able to help us except to mask the pain, but we survivors need to help each other.
  • debrajo
    debrajo Member Posts: 1,095 Member
    #10
    clr129 said:

    Not from radiation
    I was fortunate enough not to need radiation. I also noticed tht any old injury I had has now come back with a vengeance. I tore a rotator cuf a long time ago and since all of this, it has been hurting along with a separated shoulder that never hurt but just started the same time all of this other pain did. I want to find something that works so I can pass it on to others. Researching this topic has been an emoptional rollercoaster because of the lack of knowing what works and what doesn't. I will try different things and post the results of everything I find. The medical community may not be able to help us except to mask the pain, but we survivors need to help each other.

    I really don't know what
    I really don't know what helps that much and I am probably older than a lot on the boards, but I know the arthritis I had BEFORE the chemo and radiation really accelerated the bone aging, especially with the calcifications and new-growth bone spurs. I move like I'm in my 80's instead of being 60. Best, debrajo
  • mobmob
    mobmob Member Posts: 14 Member
    #11
    debrajo said:

    I really don't know what
    I really don't know what helps that much and I am probably older than a lot on the boards, but I know the arthritis I had BEFORE the chemo and radiation really accelerated the bone aging, especially with the calcifications and new-growth bone spurs. I move like I'm in my 80's instead of being 60. Best, debrajo

    pain
    I was diagnosed with stage 4 endometrial cancer in Oct. 2010. I had metastases to the brain, hence the stage 4 diagnosis. I had Cyberknife treatments for the brain metastases on 11-2010, 2-2011, and 4-2012. --but back to the leg pain. My first OBGyn oncologist swore up and down that my leg pain was not neuropathy. She said the chemo had triggered an underlying condition. Then once I had completed my six chemo sessions (Carboplatin and Taxol) she decided my leg pain WAS due to neuropathy after all. I changed OBGyn oncologists, not because I wanted to, and the doctor I have now said "Oh, that leg pain is due to the Taxol" I don't know what to believe even now. Mostly I tell people that I have leg pain due to my chemo meds and I leave the word neuropathy out of it. I do think the numbness and pain in my feet are due to neuropathy. My additional leg pain, pain of the entire leg, is not neuropathy, I believe. I also have leg weakness, which to me is strange.
    I was prescribed Gabapentin first, when I rejected that med I was prescribed Nortriptyline. Both of these drugs caused undesireable side effects and both helped (with the pain) somewhat but not enough. Both drugs slow your metabolism and cause a rise in blood sugar levels.
    So for right now I take Norco (5 mg of hydrocodone and 325 mg of acetaminophen). I take 4 pills within a 24 hour period. I also take Cacium, Vitamin B, etc. I take hot baths several times a day. I walk a minimum of 60 minutes a day, usually 90 minutes a day. I HOPE that helps with my leg pain and weakness. I prioritize the walking because I may need to have chemo again and I think I should work on my physical strength.
    My current doctor, at one point said "I can offer you Gabapentin and I can offer you Nortrityline and that's about it." I think that if a doctor says this to you, don't you believe them. When it comes to pain, there is always some other strategy or method that can be tried. Doctors should not be dismissive about your pain.
  • 17tangerine
    17tangerine Member Posts: 1
    #12
    clr129 said:

    Not from radiation
    I was fortunate enough not to need radiation. I also noticed tht any old injury I had has now come back with a vengeance. I tore a rotator cuf a long time ago and since all of this, it has been hurting along with a separated shoulder that never hurt but just started the same time all of this other pain did. I want to find something that works so I can pass it on to others. Researching this topic has been an emoptional rollercoaster because of the lack of knowing what works and what doesn't. I will try different things and post the results of everything I find. The medical community may not be able to help us except to mask the pain, but we survivors need to help each other.

    Same thing here
    Hey clr129,

    Just want to let you know I have EXACTLY the same thing. Finished chemo on February 29 th, this year and I have been experiencing pretty severe join pain....ankles, knees , hips, elbows, even my fingers. It is definitely not neuropathy, I know what that is and I have it in my toes believe it or not. I also have not had radiation, so none of that can be a factor. I noticed that we were not on the same meds, but I think that they must be similar. I was on cisplatin ( heavy metal ) and taxotere. What i also had was a heavy dose of steroids while I was on chemo. I read that withdrawals from steroids may cause joint pain, but I am not a doctor. Having said that, I am seeing my doctor this Wednesday because I believe it is unacceptable to have to deal with this level of pain. I will post when I know more, and hang in there! You are definitely not alone!
  • clr129
    clr129 Member Posts: 10
    #13
    17tangerine said:

    Same thing here
    Hey clr129,

    Just want to let you know I have EXACTLY the same thing. Finished chemo on February 29 th, this year and I have been experiencing pretty severe join pain....ankles, knees , hips, elbows, even my fingers. It is definitely not neuropathy, I know what that is and I have it in my toes believe it or not. I also have not had radiation, so none of that can be a factor. I noticed that we were not on the same meds, but I think that they must be similar. I was on cisplatin ( heavy metal ) and taxotere. What i also had was a heavy dose of steroids while I was on chemo. I read that withdrawals from steroids may cause joint pain, but I am not a doctor. Having said that, I am seeing my doctor this Wednesday because I believe it is unacceptable to have to deal with this level of pain. I will post when I know more, and hang in there! You are definitely not alone!

    have you heard?
    Hi 17tangerine, did your Oncologit tell you what this could be and how to get rid of it? It is debilitating. No one told me this would happen AFTER chemo.Emotionally it is really taking a toll on me not to mention the physcial pain. It seems Doctors don't recognize this as a true condition. They seem to blow it off like it's just what happens when we get older stuff. Im sorry but so many cancer patients going through the exact same thing can't be just "experiencing getting older". Im having to pull away from friends and activities now because the pain is so intense. I HATE THIS!
  • Latina5363
    Latina5363 Member Posts: 1
    #14
    clr129 said:

    have you heard?
    Hi 17tangerine, did your Oncologit tell you what this could be and how to get rid of it? It is debilitating. No one told me this would happen AFTER chemo.Emotionally it is really taking a toll on me not to mention the physcial pain. It seems Doctors don't recognize this as a true condition. They seem to blow it off like it's just what happens when we get older stuff. Im sorry but so many cancer patients going through the exact same thing can't be just "experiencing getting older". Im having to pull away from friends and activities now because the pain is so intense. I HATE THIS!

    Hi Clr129
    I feel your pain, I am half-way through my treatment for breast cancer and the pain is also excruciating. I love how the Dr's want to know everything your going through and when you tell them you have pain they tell you to take OTC stuff. Anyway after my first round and being in pain for almost of week I told my Dr, I wanted pain meds, they are low dose Lortabs, but in combination with Ibuprofen they do help and I feel human for a few hours. Ive read a lot about these pains and for some folks it does go away after a few years and for some they still are experiencing it, I really hope you get relief soon, I know how you feel, I don't believe it has anything to do with the age or the level of activity. As much as the chemo helps, its there to destroy so i believe there is damage weather permanent or temporary done to our bodies as well. Hang in there girl! I don't know what else to say.
  • Audray
    Audray Member Posts: 24
    #15
    Joint Pain after Chemo.
    This sound very like I had last year after the same chemo. I have read many people who have had the same pains. I have found that Osteopathy has worked for me. I am lucky to have a very good one in my area. I had very bad pain in my hip joints and the bottom of my back. He has helped me to help myself with the pain,and it has really worked for me. But the naggin pain in the bones of my legs and shoulders etc. just seemed to go away about six months after the chemo finished.. I think it can take varying lengths of time to subside.
    I remember feeling like a 90 year old. Sometimes I just ached all over, and didn't know where to put myself. It has got much easier for me, so I hope and pray that it gets better very soon for you too. By the way the problem with all this, is that it seems so difficult to get the DRs. to admit that the chemo does have such lasting effects. They admited to me that it can cause any arthritus to get worse. It all leaves us worrying that it could be the cancer causing all the pain..But it is definately those 2 chemos causing it, and not your lack of activity..athough I found that I was better walking than sitting. I also had quite bad neuropathy, and still have that in my toes and fingers, Also my feet are always cold. Still these are small things to put up with compared to the alternative.
  • Audray
    Audray Member Posts: 24
    #16
    Joint Pain after Chemo.
    This sound very like I had last year after the same chemo. I have read many people who have had the same pains. I have found that Osteopathy has worked for me. I am lucky to have a very good one in my area. I had very bad pain in my hip joints and the bottom of my back. He has helped me to help myself with the pain,and it has really worked for me. But the naggin pain in the bones of my legs and shoulders etc. just seemed to go away about six months after the chemo finished.. I think it can take varying lengths of time to subside.
    I remember feeling like a 90 year old. Sometimes I just ached all over, and didn't know where to put myself. It has got much easier for me, so I hope and pray that it gets better very soon for you too. By the way the problem with all this, is that it seems so difficult to get the DRs. to admit that the chemo does have such lasting effects. They admited to me that it can cause any arthritus to get worse. It all leaves us worrying that it could be the cancer causing all the pain..But it is definately those 2 chemos causing it, and not your lack of activity..athough I found that I was better walking than sitting. I also had quite bad neuropathy, and still have that in my toes and fingers, Also my feet are always cold. Still these are small things to put up with compared to the alternative.
  • Audray
    Audray Member Posts: 24
    #17
    Joint Pain after Chemo.
    This sound very like I had last year after the same chemo. I have read many people who have had the same pains. I have found that Osteopathy has worked for me. I am lucky to have a very good one in my area. I had very bad pain in my hip joints and the bottom of my back. He has helped me to help myself with the pain,and it has really worked for me. But the naggin pain in the bones of my legs and shoulders etc. just seemed to go away about six months after the chemo finished.. I think it can take varying lengths of time to subside.
    I remember feeling like a 90 year old. Sometimes I just ached all over, and didn't know where to put myself. It has got much easier for me, so I hope and pray that it gets better very soon for you too. By the way the problem with all this, is that it seems so difficult to get the DRs. to admit that the chemo does have such lasting effects. They admited to me that it can cause any arthritus to get worse. It all leaves us worrying that it could be the cancer causing all the pain..But it is definately those 2 chemos causing it, and not your lack of activity..athough I found that I was better walking than sitting. I also had quite bad neuropathy, and still have that in my toes and fingers, Also my feet are always cold. Still these are small things to put up with compared to the alternative.
  • Hannah1
    Hannah1 Member Posts: 63
    #18
    Pain after chemo
    I also remember I had so much pain on my hips after chemo. It was that bad that I have a hard time getting out of the car and from sitting position.
    I kept complaining to my dr so she had me do bone density scan. Found out I had bad osteoporosis. She put me on fosomax 70mg once a week and calcium 1200mg and after a month or so I felt much better. I was diagnosed 2004 with uterine cancer stage 3c, went on 7rounds of chemo and internal and external radiation. Have your bone density checked. Hope this help
  • Jaqlin
    Jaqlin Member Posts: 3 Member
    #19
    clr129 said:

    have you heard?
    Hi 17tangerine, did your Oncologit tell you what this could be and how to get rid of it? It is debilitating. No one told me this would happen AFTER chemo.Emotionally it is really taking a toll on me not to mention the physcial pain. It seems Doctors don't recognize this as a true condition. They seem to blow it off like it's just what happens when we get older stuff. Im sorry but so many cancer patients going through the exact same thing can't be just "experiencing getting older". Im having to pull away from friends and activities now because the pain is so intense. I HATE THIS!

    Bone and joint pain
    Hi I have the same pain, I am 6 months out of chemo and had the pain really badly during the treatment. It's in the bones and the joints, mainly in my legs but recently I have been getting pain in my bum as well. It's worse after activity or conversely being stagnant for a long time, like sat at work. My doctors say it is really common in women to get this. It can be from bone density loss, like arthritis. But more commonly and in my case it is called bone turnover. Chemo destroys your red blood cells and other cells and they have to be replaced from scratch. This is where the pain comes from. Like growing pains. It's actually a good sign as it means you are repairing. Your bone density drops from chemo and as you do weight baring exersise it compacts and stretches the bones again. This is why it's worse after sitting as you have had the weight on one place for a long time. Joint pain is a bit different and caused by the destruction of the fluid in your joints. For this I take maximum strength glucosamine with chondroitin msm. Get a good quality one and take it twice a day, it will lubricate your joints. Takes about a month to kick in and then after 3 months joint pain is at about 10 percent for me. The bone pain is a little harder to deal with. I just take pain killers in the hope that when my bones finally repair it will be more minimal. The best advice I have is to be moderately active. Intense exercise will make it worse, as will sloth. Try to go for a longish walk. I also try to go for a five minute walk around the office every 30 mins. I am really sorry you have been made to feel you ar the only one with this. Many of us have it and it's horrible the doctors don't recognise it as a symptom of chemo. I know it's awful but hang in there, you have been through hell and your body needs time and care to repair. Take some vit c and d3. Stay strong.
  • Jaqlin
    Jaqlin Member Posts: 3 Member
    #20
    clr129 said:

    have you heard?
    Hi 17tangerine, did your Oncologit tell you what this could be and how to get rid of it? It is debilitating. No one told me this would happen AFTER chemo.Emotionally it is really taking a toll on me not to mention the physcial pain. It seems Doctors don't recognize this as a true condition. They seem to blow it off like it's just what happens when we get older stuff. Im sorry but so many cancer patients going through the exact same thing can't be just "experiencing getting older". Im having to pull away from friends and activities now because the pain is so intense. I HATE THIS!

    Bone and joint pain
    Hi I have the same pain, I am 6 months out of chemo and had the pain really badly during the treatment. It's in the bones and the joints, mainly in my legs but recently I have been getting pain in my bum as well. It's worse after activity or conversely being stagnant for a long time, like sat at work. My doctors say it is really common in women to get this. It can be from bone density loss, like arthritis. But more commonly and in my case it is called bone turnover. Chemo destroys your red blood cells and other cells and they have to be replaced from scratch. This is where the pain comes from. Like growing pains. It's actually a good sign as it means you are repairing. Your bone density drops from chemo and as you do weight baring exersise it compacts and stretches the bones again. This is why it's worse after sitting as you have had the weight on one place for a long time. Joint pain is a bit different and caused by the destruction of the fluid in your joints. For this I take maximum strength glucosamine with chondroitin msm. Get a good quality one and take it twice a day, it will lubricate your joints. Takes about a month to kick in and then after 3 months joint pain is at about 10 percent for me. The bone pain is a little harder to deal with. I just take pain killers in the hope that when my bones finally repair it will be more minimal. The best advice I have is to be moderately active. Intense exercise will make it worse, as will sloth. Try to go for a longish walk. I also try to go for a five minute walk around the office every 30 mins. I am really sorry you have been made to feel you ar the only one with this. Many of us have it and it's horrible the doctors don't recognise it as a symptom of chemo. I know it's awful but hang in there, you have been through hell and your body needs time and care to repair. Take some vit c and d3. Stay strong.
  • clr129
    clr129 Member Posts: 10
    #21
    Jaqlin said:

    Bone and joint pain
    Hi I have the same pain, I am 6 months out of chemo and had the pain really badly during the treatment. It's in the bones and the joints, mainly in my legs but recently I have been getting pain in my bum as well. It's worse after activity or conversely being stagnant for a long time, like sat at work. My doctors say it is really common in women to get this. It can be from bone density loss, like arthritis. But more commonly and in my case it is called bone turnover. Chemo destroys your red blood cells and other cells and they have to be replaced from scratch. This is where the pain comes from. Like growing pains. It's actually a good sign as it means you are repairing. Your bone density drops from chemo and as you do weight baring exersise it compacts and stretches the bones again. This is why it's worse after sitting as you have had the weight on one place for a long time. Joint pain is a bit different and caused by the destruction of the fluid in your joints. For this I take maximum strength glucosamine with chondroitin msm. Get a good quality one and take it twice a day, it will lubricate your joints. Takes about a month to kick in and then after 3 months joint pain is at about 10 percent for me. The bone pain is a little harder to deal with. I just take pain killers in the hope that when my bones finally repair it will be more minimal. The best advice I have is to be moderately active. Intense exercise will make it worse, as will sloth. Try to go for a longish walk. I also try to go for a five minute walk around the office every 30 mins. I am really sorry you have been made to feel you ar the only one with this. Many of us have it and it's horrible the doctors don't recognise it as a symptom of chemo. I know it's awful but hang in there, you have been through hell and your body needs time and care to repair. Take some vit c and d3. Stay strong.

    Finally some answers
    Thank you Jaqlin for your advice. I was worried that this condition may last the rest of my life as the pain seems to be getting worse and now my left knee for no apparent reason seems to have gone out. But I noticed it "creeks" that is where your info on the destruction of fluid in my joints really makes sense. I will go get some glucosamine and chrondroitin right away. It was so thrilling to see that you received less pain after a few months. I was tested for arthritis and diabetes and both were negative. I just pray this gets better and not to the point where I can't walk anymore.

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