Severe arm pain

OH MY Gosh!!!!   I have for the past 4 years from radical mastectomy/radiation have pain beyond anything else I ever have been through,  I have severe arm pain from lymphodema and have had surgery on my neck for nerve damages in between degenerative disc.  But I thought I am the only person going thru this, the doctors either shake their heads and treat you like a whiner/drug addict when you explain these symptoms and ask for pain meds.  I now cry each day and I literally feel worse now than when I went through all my cancer treatments etc., etc.. it is becoming unbearable.  I have had 2 c section, a hysterectomy, radical mastecomy and this pain does not even compare.  I basically go thru a cycle of no sleep for 2 to 3 days, then only to pass out from sheer exhaustion.  If I knew now ,I would have never done the radiation because all my doc said was you will get lymphodema.  Well at the time I am trying to get thru the cancer thing not really understanding what the outcome will be.  I feel I was not really told everything and of course I can't do anything now.  I am usually an optimistic about life, but now I am so limited.  I hope someone that is going through the same thing will email me so we can share.

 

I had a lumpectomy with radiation for 33 treatment s. I have neck pain, loss of strength in the arm and numbness where the node was dissected . I too feel that I have been discounted by my Dr. I only had Duct Cancer in Situ in 2006 and they made it seem like a simply day sugery with no lasting side effects. A little cut here and little cut    under the arm and take a Percocet and you are good to go .The breast is still hard and painful and I am in constant pain. Thankfully my regular Dr understands that I am truly in pain and is a great help with adequate pain relief.  I often wonder if I did not have very good insurance that they would have insisted on all the radiation for a cancer that was removed with the core biopsy.

 

On 1/22/2009 scarab wrote:

OH MY Gosh!!!!   I have for the past 4 years from radical mastectomy/radiation have pain beyond anything else I ever have been through,  I have severe arm pain from lymphodema and have had surgery on my neck for nerve damages in between degenerative disc.  But I thought I am the only person going thru this, the doctors either shake their heads and treat you like a whiner/drug addict when you explain these symptoms and ask for pain meds.  I now cry each day and I literally feel worse now than when I went through all my cancer treatments etc., etc.. it is becoming unbearable.  I have had 2 c section, a hysterectomy, radical mastecomy and this pain does not even compare.  I basically go thru a cycle of no sleep for 2 to 3 days, then only to pass out from sheer exhaustion.  If I knew now ,I would have never done the radiation because all my doc said was you will get lymphodema.  Well at the time I am trying to get thru the cancer thing not really understanding what the outcome will be.  I feel I was not really told everything and of course I can't do anything now.  I am usually an optimistic about life, but now I am so limited.  I hope someone that is going through the same thing will email me so we can share.

 I'm coming up to my 4 yr. milestone (radical mastectomy and 33 radiation treatments) and am here to tell you I share your pain. I also have severe neck/head pain and feel that I should be grateful they seemingly got rid of the cancer but I have no quality of life because of this constant suffering. I also feel they take no interest in any nerve damage or after-effects from their powerful treatments.

I've seen about 8 drs./treaters about the neck pain. It's been diagnosed as occipital neuralgia. Nothing I've tried has helped. MRI doesn't seem to explain what's causing it. I also have degenerative disc.

I do get relief lying down and with pain meds - Vicodin. It ONLY hurts when I move. My most recent attempt was with 10 laser treatments by a chiropractor. Nothing changed. It hurts less when I look down. Working in the kitchen isn't so bad - fortunately for my husband!

About the arm pain. I am hopeful that I've avoided the lymphedema by doing two arm exercises every day. I do it before I get out of bed. Hold the arm up, lying on my side so arm is higher than heart, and make a fist and squeeze. Also, I "pump" my arm bending at the elbow. I do 75 "for good measure" because I've never known how many are recommended.

I feel women have been shortchanged by PT people. I had heard it was important to exercise the arm and did read about it in all the literature I received in the beginning. So far, no lymphedema. I think I would be totally discouraged if I had to endure that pain along with everything else.

I'm doing the Faslodex injection every 4 weeks. I just couldn't deal with the side effects from Arimidex and Aromacin. I hate the expense of the injection however.

My heart aches for young women going through all this. I'm 68 and have had a happy life. I just didn't know the retirement years would include quite this much pain.

Regards and here's to a solution out there somewhere.

JudyB

 

 

 

 

I had a radical mastectomy on the right side nine years ago.  Many lymph nodes were removed also and I was told to expect to get lymphadema.  I was told that if I got it, it would never end.  Well, I did get it and immediately went to a special clinic at a nearby hospital that works specifically with lymphadema.  They taught me how to massage my fingers, hand, and arm in a way that would cause the lymphatic fluid in my right arm to flow to the left side of my body, relieving the build-up of fluid, swelling, pain, etc. They said that it was possible for my body to "learn" to do this on its own without the daily massage if I kept doing the massages twice every day, morning and evening. and then wrapped my arm in ace bandages to limit the fluid building up again.  I did as they said and it worked!  The fluids rerouted and the swelling and pain went away, never to return. I haven't needed to continue the massages or wraps since then.  This therapy took about four months before the lymphadema went away.  I have other pain and fatigue from my cancer, and have found oxycontin to be the best help for that.  Good luck to you.

 

 

 

 

 

 

 

 

 

 

 

On 1/26/2009 lisasnfrd wrote:

I had a radical mastectomy on the right side nine years ago.  Many lymph nodes were removed also and I was told to expect to get lymphadema.  I was told that if I got it, it would never end.  Well, I did get it and immediately went to a special clinic at a nearby hospital that works specifically with lymphadema.  They taught me how to massage my fingers, hand, and arm in a way that would cause the lymphatic fluid in my right arm to flow to the left side of my body, relieving the build-up of fluid, swelling, pain, etc. They said that it was possible for my body to "learn" to do this on its own without the daily massage if I kept doing the massages twice every day, morning and evening. and then wrapped my arm in ace bandages to limit the fluid building up again.  I did as they said and it worked!  The fluids rerouted and the swelling and pain went away, never to return. I haven't needed to continue the massages or wraps since then.  This therapy took about four months before the lymphadema went away.  I have other pain and fatigue from my cancer, and have found oxycontin to be the best help for that.  Good luck to you.

 

You made my day its good to hear that the pain and swelling end.I started with thel lymphadema whilegoing through radiation, it went away as long as iwent to clinic for thewraps and massages but now its back so its good to know it willgo away

carrie