Does anyone know the exact cause of the pain in muscles and joints post chemo. Is it muscular, is it nerve related? My oncologist doesnt seem to want to address it and I am getting a reaction that they seemed puzzled that I am experiencing this continued pain so long after treatment has been completed. I can't believe Im his first patient that has complained about it. I read many posts of women suffering from this and I feel its the damage caused by the toxic chemo drugs and the doctors don't want to admit to it. They are willing to prescribe something to help ease the pain and help me get some sleep at nite but they don't seem to want to address the underlying cause. Should I see a neurologist? For those of you that are experiencing this pain or discomfort , what are you doing. Is this just permanant damage that I have to learn to live with?
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post treatment pain
- By kalo555
- Posted June 24, 2009 at 3:53 pm · 31 replies
- In Side effects of treatment
- Shared with the public
Explore topics in this discussion:
Exercise Arthritis Gabapentin Advil Fentanyl Ativan Physical therapy Vicodin Oxycodone Pain Weakness Neurontin Lyrica Acupuncture Percocet
31 replies
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- Newest first
- By Cookie519
- Posted August 16, 2009 at 2:31 pm
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OMG! I thought it just me!!!!!!! I'm 64 and I thought it was osteo or "old age" creeping up on me. Last night I met an ovca friend and she is like 44 and we talked. She told me her right hip is sometimes so bad she can't get out of bed. Her last chemo was in 2007. My last chemo was in 2008. My lower back aches and I find that I can't walk for more than maybe 2 blocks. I too started swimming and that seems to help. Aug. 28th I see the onc and will ask him about this, which really just started in May when I did a lot of walking in Orlando. Will keep you posted if he blows me off or what. My friend was surprised that I didn't know this was a residual effect of the chemo...joint pain. So I jumped on here to see what all my sisters had to say.
God Bless,
Marilyn
- By kalo555
- Posted July 30, 2009 at 11:51 am
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Try vitamin b complex. I'll not be able to take it since I'll be starting chemo again but if it helps anyone out there great. I have a 21 yo buckskin Quarter Horse. He's my first and I got him 3 years ago. He's a sweetheart, a gentleman and at 21 quite the handful sometimes. I love him dearly.
- By PUPPYMOMMY
- Posted July 30, 2009 at 8:22 am
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Thank you for opening the discussion on this topic. I have been looking for people who have the same problem I do now that chemo is over. My doctor told me I would have "lasting effects" all my life about 20% of the worst. It seem to move around as I get stronger. I had to go to the hospital with excruciating leg and abdominal pain that was treated with morpine immediately then percocet, muscle relaxors and steroids. I think the steroids reduced the inflamation, but I would only do that short term.
What kind of horse do you have? I have a mustang gelding and a mustang quarterhorse mare.
- By cdbart
- Posted July 29, 2009 at 7:53 pm
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Don't know why the oncologist is surprised. Though it is not common, bone pain does exist. The first two sessions were so bad that I almost did not do three. They did finally get a combination of drugs that made the pain at about three. It was off the charts before. I am taking vicodin and oxyconxone on days three, four, and five. My Internist was even aware of the pain side effct. THere is also the chance of permanent nerve damage so if you have tingling of hands and feet talk to the oncologist asap. At least that is what I have been told. I only have the pain for a few days and then nothing. Hopefully it will not occur after chemo.
- By cdbart
- Posted July 29, 2009 at 7:53 pm
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Don't know why the oncologist is surprised. Though it is not common, bone pain does exist. The first two sessions were so bad that I almost did not do three. They did finally get a combination of drugs that made the pain at about three. It was off the charts before. I am taking vicodin and oxyconxone on days three, four, and five. My Internist was even aware of the pain side effct. THere is also the chance of permanent nerve damage so if you have tingling of hands and feet talk to the oncologist asap. At least that is what I have been told. I only have the pain for a few days and then nothing. Hopefully it will not occur after chemo.
- By kalo555
- Posted July 29, 2009 at 1:30 pm
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My doctors will give me anything I need for pain but that isn't an answer for me. I feel if there is a natural , healthy way to go about something I prefer that over drugs. I am becoming a believer in b-complex and encourage those with neuragia to try it. Give it time but I think you may see improvement. In addition I take a multiple vitamin, vitamin D(hugely important for women), calcium, C and E. I will be starting treatment again next week so I have to give up everything except my multiple, D and calcium.
- By Onthemend
- Posted July 29, 2009 at 9:52 am
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I finished 6 rounds taxo/carbo in April but the pain in my back and legs can bring me to tears on some days. I am only 39 and I keep expecting it to be gone already too. In Sept. I'll start 3 rounds of IVIP and among my other worries I'm concerned about how this will contribute to the body pain.
- By kalo555
- Posted July 29, 2009 at 7:23 am
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I have been taking B complex and am feeling improvement. It's still there but not nearly as bad.
- By kolson
- Posted July 29, 2009 at 12:26 am
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I have the same issues. I am 41 and finished chemo Dec 17th 2008. I saw my primary care DR today and they prescribed me Lyrica. I'll let you know how it works. I hope it does. I am in so much pain. No one understands this. I feel 90 too Kalo, and move around like a 90 year old. I hoped by now it would be better. Some times it seems like it's worse, but I know it's not. The bone pain during chemo and the lack of energy was worse. I needed the reminder! :)
Best wishes to you strong ladies!
Kris
- By rick1
- Posted June 30, 2009 at 1:35 pm
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A regimen that worked amazingly well for a while with Pam was adding Excedrin Back and Body tablets to her already daily doses of Fentanyl patches and oxycodone. Of course this was approved by her oncologist and we found that this maximized the analgesic effect of the opiates. It worked especially well for the abdomen and side pain.
Also, we found that a pain management doctor at UCI was exactly what she needed to manage all of the medications. They often use combinations and dosages that would scare away an oncologist, yet it was the most compassionate thing that really helped her. Additionally, there are drugs like gabapentin and Lyrica that can help nerve pain.
- By stldaisy
- Posted June 30, 2009 at 10:30 am
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I finished my chemo in April. My hands and feet started hurting about a month later. I, too, am so stiff and my feet hurt so badly in the morning. My extremities feel swollen and sometimes feel like they are burning and warm to the touch. The pads of my fingertips and toes are numb and the balls of my feet feel numb as well.
If I put weight on my arms, they feel like they are vibrating the length of my arm into my palm.
I feel clumsy and sometimes my spacial perception feels off, I bang my hands into walls all the time.
I asked my oncologist for medication, and he gave me a scrip for Gabapentin (Neurontin). I'm to take it 3 times a day... I have a hard time remembering to take medications. I finally put all my meds (I'm also taking a B-complex) in a daily pill box.
I'm hoping that if I can take the med regularly like I'm supposed to that I will find some relief, but I've only been taking it since June 16.
The side effects list for Gabapentin is a mile long.
I see the doctor at the end of the month and may ask him if I could add the glutamine powder that loveMnms is taking.
If I keep busy, I don't think about it as much. But certain activities bother me more than others... in fact yesterday it hurt me to even hold a pencil.
I wish you all well, and pray for us all to have some relief.
- By kalo555
- Posted June 30, 2009 at 7:13 am
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Im 54 and move like Im 90. Its worse in the morning when I get out of bed and at nite. I usually take an advil to help me get moving . I feel it all the time but Im able to keep myself busy. Im seeing my oncologist again next week and am planning to mention that I am not alone in this pain.
- By craftslady
- Posted June 29, 2009 at 6:21 pm
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Nice to know it's not in my head. It's in my right hip and upper leg. I can't lie on my right side in bed for more than a few minutes before it gets really painful. And I am stiff getting out of a chair. My last chemo was 4/23/09, and this all started in June. Got worse and finally has leveled off. Not bad enough to need painkillers, and I am going to the gym, but I walk like an old lady sometimes (I am 53). Don't see the onc again till August, and I wasn't planning on calling her (maybe I am making a mountain out of a molehill), but hearing that I am not the only one has made me rethink it. I will call her and see what she has to say. Thanks for making realize I am not alone!
Irene
- By kalo555
- Posted June 29, 2009 at 4:07 pm
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It is so obvious to me that with all of us suffering after chemo that there are long term effects from chemo that our doctors want to ignore. Im not understanding why they wish to ignore what seems to be obvious . I was talking to my daughter about the pain and she said to her it sounds like classic neuralgia. She is a medical assistant for a foot surgeon and said that he often treats patients with this type of leg pain with a prescription vitamin B. She said that the improvement in the patients pain level is remarkable after being on the vitamin for a few weeks. She said it should be complete B complex. Hopefully that will help somewhat.
Im anxious to try it and see. I dont want to rely on pain pills and muscle relaxers. .
- By Amethystmd2559
- Posted June 29, 2009 at 1:10 pm
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I just had my 3rd round of chemo on the 25th, and for the past 3 days have been in a lot of pain. Joints, muscles, and muscle cramping. Trying to get my doc to prescribe something, still waiting to here from her. Haven't even been able to sleep for 2 nights, and had to come back to work today after being off for 7 weeks.
Still smiling though, trying to get through it all!
Bobbie
- By Leslie4999
- Posted June 29, 2009 at 12:42 pm
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I finished chemo in February 2008. I had pain for quite a while after the chemo stopped. I tried acupuncture at the recommendation of my general practitioner, as my oncologist didn't seem to be listening. The acupuncture really did help. I am a nurse and was skeptical about it, but I am a true believer now.
- By patsobo
- Posted June 29, 2009 at 11:04 am
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I can totally relate, hearing these posts makes me feel that maybe it's not all in my head. My last chemo was July 2005 , I experienced many bad reactions to the chemo but the joint and muscle pain and the stiffness in shoulders have never quite gone away. I love my onc but the same answers, after so long I should not have these problems due to chemo. I am beginning to believe the poison really does do live long damage.
- By Eileen1941
- Posted June 28, 2009 at 11:53 pm
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Hi Kalo,
I'm sorry to hear that you are still having pain. But I am glad that you brought this issue up. I am on a chemo holiday, my last infusion was April 15th. I have scans again on July 7th to see if I can stay off the chemo longer. I certainly have my fingers crossed.
But over the last week I have developed some severe shoulder pains under my left shoulder and pains like Charlie Horses in the tops of both legs. They hurt so bad that the muscles stay sore to the touch. I am on Oxycodone for ongoing abdominal pain and still the muscular pains were so bad I wanted to yell. I have found that adding low dose Ativan has helped some. Apparently, the more I can relax the less tense my muscles are. And this has given me some relief. Perhaps a little low dose Ativan will be helpful for you too, I hope so!
Please keep us up to date on how you are doing. But if your onc continues to blow you off, I would bring up the issue with your primary care physician. Good luck. Eileen
- By kalo555
- Posted June 28, 2009 at 7:50 am
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Thanks everyone for your info and advise. demelza, I had surgury in Sep 08 and finished my last round of chemo feb 09. I couldnt ride my horse the entire time, and was only able to get to the boarding stable to see him a handful of times.That was the worst. I started riding again in Mar of this year and was just starting to get my leg muscles back in shape when this pain started. It doesnt seem to matter what Im doing. By the end of the day Im in pain.
- By jeaniet
- Posted June 28, 2009 at 12:39 am
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I saw my Primary Care doc yesterday to start the process of addressing my severe shoulder pain and stiffness, as I mentioned in my previous post.
Even though my recent PET says my shoulders are probably arthritic, she believes I have Rotator Cuff problems/injury. I disagree, as I have never done any activity to injure them. I asked her which test, if any, would fairly definitively say if it is arthritis or not. She said an MRI, and ordered one. Also referred me to an Ortho doc, and for PT.
So, still no answers, but I hope the MRI and Ortho doc can provide the answer. I'll share what comes of it.
Jeanie
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