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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- By jeaniet
- Posted June 24, 2009 at 5:51 pm
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OOOHHHH girl I feel your pain! I never knew this would be a result of chemo......didn't have it DURING chemo, but as a result of chemo!
My Onc totally blew me off too.
I am going to Primary Care doc on Friday to get a referral to Ortho or Rheumatology and for some physical therapy. PET scan said it appears to be arthritis, so I am going to ask for a referral to Rheumatology but i'll take whatever I can get!
A different Onc said it is my rotator cuffs, and to get steroid shots and PT.
I am miserable! and terrified that it is permanent since it appears to be arthritis.
I am only 49, but my shoulders feel like I am 100! I can't even wash my hair with my left arm. Thank god my right shoulder has more movement. And the pain.......ooooooooohhhhh man.
I never felt this bad in chemo!
I am with you sister!
Jeanie
- By kalo555
- Posted June 25, 2009 at 6:35 am
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Thankyou so much for your info. I had intense pain in my legs starting with my 3rd round of chemo. It was so bad I couldnt stand, couldn't walk, felt like I was crippled. It always eased up after a few days just like the other side effects. Now 4 months post chemo it's back and the oncologist seem so shocked. I can manage the pain throughout the day but by evening it's difficult to walk . I just turned 54(still a young chick!) and have never had leg issues prior to chemo. Time to start talking to other doctors I guess. Thanks again for your input.
- By gg1
- Posted June 25, 2009 at 9:26 am
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I had neuropathy and really bad bone pain with my first chemo. It just progressively got worse. I too was in a wheel chair and the bottom of my feet felt like raw hamburger. After chemo ( I had 9 rounds ) it seemed to get better for awhile, I was up to 45 minutes on the tread mill! Bone pain, joint pain, and neuropathy are definitly my biggest problems now. I have talked over and over again to my onc/gyn and they don/t seem to be able to help. I had a bone scan and to my surprise it was normal. I take mag/cal/D, and glucosamime sulfate to try and help but I;m afraid I am starting to fall more. I am sorry I have not a solution if you try anything that helps please share.
- By Nanamom
- Posted June 25, 2009 at 10:00 am
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During chemo I was also recovering from Critical Illness Myopathy (a profound muscular weakness) that developed as a result of surgical complications. So I'm not sure which of my issues were the result of CIM and which came from chemo but I had all sorts of aches and pains. After chemo ended I told people that I felt as though I had been placed in a barrel and rolled down a rocky hill. I just ached everywhere. Two things have helped - first, increasing my magnesium level through supplements (I did have IV magnesium during chemo at one point) and secondly, after I finished physical therapy for the CIM I was encouraged to keep exercising and I started swimming. Swimming was the only activity I could do and not have it hurt. It was amazing how much better I felt after I got out of the water. It's been exactly a year since I started to swim and it's been tremendously helpful. I could only do 12 lengths in 45 minutes when I started and now I do 50 in 30 minutes. I also credit swimming with helping my mood and outlook because I work out enough to produce those wonderful endorphins! This is what worked for me...best wishes, Janet
- By smac5
- Posted June 25, 2009 at 11:16 am
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I just finished my 6 treatments and am still on a modified one. The leg and foot pain that seems so common for so many is better now, but the best cure/preventative I have found now and during full treatment is support socks or stockings. Make sure you get the kind that squeeze your feet as well as your legs--Footsmart has some. The difference has been amazing for me. It was my idea, but my doc's PA said it has worked for others as well.
- By Brown_Eyes
- Posted June 25, 2009 at 11:34 am
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I'm a month out from my last chemo and still have trouble with stiffness, pain, and weakness in my hip and shoulder joints, and also some in my hands and feet.
I'm only 32 and feeling forty years older.... I'm hoping it'll go away soon. It gets better when I walk and worse when I do yoga...
- By Stoogemom
- Posted June 25, 2009 at 11:57 am
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I am 7 months out from my last chemo and finally feel like I am making some improvements. If I sat too long I could barely get off the chair and it took me a few steps to straighten up and go. This has gotten 80% better. I have the same shoulder problems that Jeanie has.....we discussed this in a previous post. I can't even get my arm up high enough to shave under my left arm. My Dr. originally told me for every month of chemo you had it would take that many months feel better. Hope you continue to improve. I think exercise really does help.....especially walking and swimming. Take care.
Stoogemom
- By tex2step
- Posted June 25, 2009 at 12:41 pm
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Hello Kris,
Please keep looking for the answer as each of us deserves to feel the best that we can. That being said...What is working for me is a pain pill at night and an sleep aid for good nights rest. I find that if I can rest at night I can do a full days activity. I also take magnesium and potassium twice a day as per my doctor and it seems to have really helped my restless legs at night. My doctor feels that quality of life is what is now the most important and this is what is working for me.
There are days when I think that I just want to be like "before", but then I remind myself that this is my "new me" and it is just OK to need some help to feel able to carry on my life. When I have tried to go to sleep without my "aids" - I find myself tossing and turning and not being able to get comfortable. It seems to magnify my pain. Good Luck and keep looking for what works for you.
- By GEPI
- Posted June 25, 2009 at 2:12 pm
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Hello,
I am one month post - chemo (8 rounds) and also have pain in the joints and bones. My doctor said it is for the treatment and recommended pain pills. I do not take them _ I seem to manage without, but what has helped me is a chiropractik who comes in and works + massage the areas that are painful. The pain seems to be easing but it is early days.
GEPI
- By demelza
- Posted June 27, 2009 at 8:32 am
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Hi,
I am about a year out of chemo and only after reading all the posts on here have I realized that what I thought was just stiffness is more than that. In fact it seems I get stiffer and stiffer. I just turned 60 so I suppose it could be age a bit but surely not so suddenly..... I horseback ride twice a week (which I was able to continue during chemo - once a week; that was so nice to be able to do ) but I am now so sore and stiff the day after my ride that I am becoming a bit discouraged at times. Do you ride, Kalo? I was wondering if you noticed more stiffness with that activity. Anyway, maybe I should look into magnesium or other supplements... so far nothing has shown any degree of arthritis. This is so nice to be able to ponder these issues with everyone!
- By lovemnms
- Posted June 27, 2009 at 9:09 am
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My 8th and final treatment was Dec, 12, 2008. I had fingernail/muscle issues after treatment 6.I started to have problems with my grip/finger numbness. I addressed the doctor numerous times about this and he really had no reply until treatment #8. He saw how bad my fingernails/ pain was that he cut the doage in half, of course by that point it didn't make a difference.
After three months my fingernails healed but my thigh and shoulder muscles aches so much I hated to move. Again, I addressed the doctor. He just said it was from lack of exercise but it wasn't, and he knew it.
He suggested I take glutamine powder 1x a day to help with the muscle issues. I started 1x a day but it didn't help until I followed the instructions on the label- 3x a day. I improved, but it took some time.
Now 6 months later, the muscle aches are gone but now I'm like an old arthritic woman. My knuckles and joints hurt.
- 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
- 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 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 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 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 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 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 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 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.
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