Post-mastectomy pain syndrome

On Feb 01, 2009 12:00 AM 4Evalive wrote:

 

On 5/17/2005 Sazzy wrote:

Dear Lucy, I hate to say it, but it's been two years and four months since my double-mastectomy, and I still have the "bunji-cord" tighteness and pain under my arms and across my chest, relieved only by hydrocodone (and every other dose or so, I have to take Benadry to combat the itching). The tightness is so bad sometimes that I panic, and I cry, just out of anger. I'm on disability because of it, and no one seems to have an answer. My primary care physician says that because the neuro-muscular pain has been chronic (since waking up from the surgery) for so long, it'll be this way forever. My surgeon never even talked about the lingering effects of the surgery. He just drew little smiley-faces on the exam-table paper to describe what I'd be left with post-surgery, but also forgot to tell me about the sagging, multi-layer skin folds he left behind, which he says used to be part of the side of my breast tissue, and which now are disgusting and depressing to look at. The pain and the unsightliness of my chest are daily reminders of my breast cancer, and it's hard to think positively about non-recurrence when I have these with me every day. I wish someone would develop a remedy for the chronic tightening and pain that doesn't involve habit-forming drugs. Please, God, send that person to all of us who fight this pain every day. We need help now, and it's NOT in our heads. By the way, if your doctors won't give you pain meds, it's time to change doctors. This is a recognized post-surgical problem (lots of references on the web under "post-mastectomy pain", and pain medication is responsible pain management, to which you are entitled, no matter how long you've been in pain. Shame on the physicians who have refused to treat this very real and chronic condition!

 

Please get a referral to a physical therapist who is familiar with myofascial release and soft tissue work.  The tightness is scar tissue that is growing and becoming more solidified from the scraping and cutting of the mastectomy.  If not taken care of can even cause boney changes, posture and shoulder pain and shape.  I was not referred by any of the docs that took care of my mastectomy and reconstruction.  The only reason I am aware is because I am a speech therapist and work with physical and occupational therapists.  There is hope for pain-free and drug free living post-mastectomy.  Good luck.........God bless!  Eva

Thank you for your post.  I too am going thru something quite similar.  I started out with the lumpectomy then when it returned it was the mastectomy.  During my chemo treatment I came down with a cold and was prescribed an antibiotic that devastated my life as I knew it. I am currently disabled and in constant pain.  The insurance has run out again and each time I have this insurance issue I have to change Dr's and wait for new approvals.  I wonder if my treatment will ever end or begin for that matter.  I am not your personal experiment!  I am totally disgusted with all of the physicians out there that do not take the time to listen to what the patient is saying.  Your not listening to your patients and we are the ones who are suffering at the price of your arrogant ignorance of your profession.  Where is your compassion?  Where is your oath?  Where the hell is your understanding of what I am really going thru?  My pain is not just physical but with all your poking and proding and medicating you forgot that I was a human being before I came to be your patient.  Breast cancer is devastating on many levels and when dealing with any kind of illness I believe that the patient should have a team of doctors  not just one.  So many things come into play when cancer is introduced to someone and it must be attacked on all levels. If the Dr. is not paying attention to what the patients concerns are then treating the disease alone will never solve the problem.  The pain is not in my head afterall...

On Feb 01, 2009 12:00 AM 4Evalive wrote:

 

On 5/17/2005 Sazzy wrote:

Dear Lucy, I hate to say it, but it's been two years and four months since my double-mastectomy, and I still have the "bunji-cord" tighteness and pain under my arms and across my chest, relieved only by hydrocodone (and every other dose or so, I have to take Benadry to combat the itching). The tightness is so bad sometimes that I panic, and I cry, just out of anger. I'm on disability because of it, and no one seems to have an answer. My primary care physician says that because the neuro-muscular pain has been chronic (since waking up from the surgery) for so long, it'll be this way forever. My surgeon never even talked about the lingering effects of the surgery. He just drew little smiley-faces on the exam-table paper to describe what I'd be left with post-surgery, but also forgot to tell me about the sagging, multi-layer skin folds he left behind, which he says used to be part of the side of my breast tissue, and which now are disgusting and depressing to look at. The pain and the unsightliness of my chest are daily reminders of my breast cancer, and it's hard to think positively about non-recurrence when I have these with me every day. I wish someone would develop a remedy for the chronic tightening and pain that doesn't involve habit-forming drugs. Please, God, send that person to all of us who fight this pain every day. We need help now, and it's NOT in our heads. By the way, if your doctors won't give you pain meds, it's time to change doctors. This is a recognized post-surgical problem (lots of references on the web under "post-mastectomy pain", and pain medication is responsible pain management, to which you are entitled, no matter how long you've been in pain. Shame on the physicians who have refused to treat this very real and chronic condition!

 

Please get a referral to a physical therapist who is familiar with myofascial release and soft tissue work.  The tightness is scar tissue that is growing and becoming more solidified from the scraping and cutting of the mastectomy.  If not taken care of can even cause boney changes, posture and shoulder pain and shape.  I was not referred by any of the docs that took care of my mastectomy and reconstruction.  The only reason I am aware is because I am a speech therapist and work with physical and occupational therapists.  There is hope for pain-free and drug free living post-mastectomy.  Good luck.........God bless!  Eva

Thank you for your post.  I too am going thru something quite similar.  I started out with the lumpectomy then when it returned it was the mastectomy.  During my chemo treatment I came down with a cold and was prescribed an antibiotic that devastated my life as I knew it. I am currently disabled and in constant pain.  The insurance has run out again and each time I have this insurance issue I have to change Dr's and wait for new approvals.  I wonder if my treatment will ever end or begin for that matter.  I am not your personal experiment!  I am totally disgusted with all of the physicians out there that do not take the time to listen to what the patient is saying.  Your not listening to your patients and we are the ones who are suffering at the price of your arrogant ignorance of your profession.  Where is your compassion?  Where is your oath?  Where the hell is your understanding of what I am really going thru?  My pain is not just physical but with all your poking and proding and medicating you forgot that I was a human being before I came to be your patient.  Breast cancer is devastating on many levels and when dealing with any kind of illness I believe that the patient should have a team of doctors  not just one.  So many things come into play when cancer is introduced to someone and it must be attacked on all levels. If the Dr. is not paying attention to what the patients concerns are then treating the disease alone will never solve the problem.  The pain is not in my head afterall...

On Feb 01, 2009 12:00 AM 4Evalive wrote:

 

On 5/17/2005 Sazzy wrote:

Dear Lucy, I hate to say it, but it's been two years and four months since my double-mastectomy, and I still have the "bunji-cord" tighteness and pain under my arms and across my chest, relieved only by hydrocodone (and every other dose or so, I have to take Benadry to combat the itching). The tightness is so bad sometimes that I panic, and I cry, just out of anger. I'm on disability because of it, and no one seems to have an answer. My primary care physician says that because the neuro-muscular pain has been chronic (since waking up from the surgery) for so long, it'll be this way forever. My surgeon never even talked about the lingering effects of the surgery. He just drew little smiley-faces on the exam-table paper to describe what I'd be left with post-surgery, but also forgot to tell me about the sagging, multi-layer skin folds he left behind, which he says used to be part of the side of my breast tissue, and which now are disgusting and depressing to look at. The pain and the unsightliness of my chest are daily reminders of my breast cancer, and it's hard to think positively about non-recurrence when I have these with me every day. I wish someone would develop a remedy for the chronic tightening and pain that doesn't involve habit-forming drugs. Please, God, send that person to all of us who fight this pain every day. We need help now, and it's NOT in our heads. By the way, if your doctors won't give you pain meds, it's time to change doctors. This is a recognized post-surgical problem (lots of references on the web under "post-mastectomy pain", and pain medication is responsible pain management, to which you are entitled, no matter how long you've been in pain. Shame on the physicians who have refused to treat this very real and chronic condition!

 

Please get a referral to a physical therapist who is familiar with myofascial release and soft tissue work.  The tightness is scar tissue that is growing and becoming more solidified from the scraping and cutting of the mastectomy.  If not taken care of can even cause boney changes, posture and shoulder pain and shape.  I was not referred by any of the docs that took care of my mastectomy and reconstruction.  The only reason I am aware is because I am a speech therapist and work with physical and occupational therapists.  There is hope for pain-free and drug free living post-mastectomy.  Good luck.........God bless!  Eva

Thank you for your post.  I too am going thru something quite similar.  I started out with the lumpectomy then when it returned it was the mastectomy.  During my chemo treatment I came down with a cold and was prescribed an antibiotic that devastated my life as I knew it. I am currently disabled and in constant pain.  The insurance has run out again and each time I have this insurance issue I have to change Dr's and wait for new approvals.  I wonder if my treatment will ever end or begin for that matter.  I am not your personal experiment!  I am totally disgusted with all of the physicians out there that do not take the time to listen to what the patient is saying.  Your not listening to your patients and we are the ones who are suffering at the price of your arrogant ignorance of your profession.  Where is your compassion?  Where is your oath?  Where the hell is your understanding of what I am really going thru?  My pain is not just physical but with all your poking and proding and medicating you forgot that I was a human being before I came to be your patient.  Breast cancer is devastating on many levels and when dealing with any kind of illness I believe that the patient should have a team of doctors  not just one.  So many things come into play when cancer is introduced to someone and it must be attacked on all levels. If the Dr. is not paying attention to what the patients concerns are then treating the disease alone will never solve the problem.  The pain is not in my head afterall...

On Feb 17, 2015 4:43 AM empressG wrote:

On Feb 01, 2009 12:00 AM 4Evalive wrote:

 

On 5/17/2005 Sazzy wrote:

Dear Lucy, I hate to say it, but it's been two years and four months since my double-mastectomy, and I still have the "bunji-cord" tighteness and pain under my arms and across my chest, relieved only by hydrocodone (and every other dose or so, I have to take Benadry to combat the itching). The tightness is so bad sometimes that I panic, and I cry, just out of anger. I'm on disability because of it, and no one seems to have an answer. My primary care physician says that because the neuro-muscular pain has been chronic (since waking up from the surgery) for so long, it'll be this way forever. My surgeon never even talked about the lingering effects of the surgery. He just drew little smiley-faces on the exam-table paper to describe what I'd be left with post-surgery, but also forgot to tell me about the sagging, multi-layer skin folds he left behind, which he says used to be part of the side of my breast tissue, and which now are disgusting and depressing to look at. The pain and the unsightliness of my chest are daily reminders of my breast cancer, and it's hard to think positively about non-recurrence when I have these with me every day. I wish someone would develop a remedy for the chronic tightening and pain that doesn't involve habit-forming drugs. Please, God, send that person to all of us who fight this pain every day. We need help now, and it's NOT in our heads. By the way, if your doctors won't give you pain meds, it's time to change doctors. This is a recognized post-surgical problem (lots of references on the web under "post-mastectomy pain", and pain medication is responsible pain management, to which you are entitled, no matter how long you've been in pain. Shame on the physicians who have refused to treat this very real and chronic condition!

 

Please get a referral to a physical therapist who is familiar with myofascial release and soft tissue work.  The tightness is scar tissue that is growing and becoming more solidified from the scraping and cutting of the mastectomy.  If not taken care of can even cause boney changes, posture and shoulder pain and shape.  I was not referred by any of the docs that took care of my mastectomy and reconstruction.  The only reason I am aware is because I am a speech therapist and work with physical and occupational therapists.  There is hope for pain-free and drug free living post-mastectomy.  Good luck.........God bless!  Eva

Thank you for your post.  I too am going thru something quite similar.  I started out with the lumpectomy then when it returned it was the mastectomy.  During my chemo treatment I came down with a cold and was prescribed an antibiotic that devastated my life as I knew it. I am currently disabled and in constant pain.  The insurance has run out again and each time I have this insurance issue I have to change Dr's and wait for new approvals.  I wonder if my treatment will ever end or begin for that matter.  I am not your personal experiment!  I am totally disgusted with all of the physicians out there that do not take the time to listen to what the patient is saying.  Your not listening to your patients and we are the ones who are suffering at the price of your arrogant ignorance of your profession.  Where is your compassion?  Where is your oath?  Where the hell is your understanding of what I am really going thru?  My pain is not just physical but with all your poking and proding and medicating you forgot that I was a human being before I came to be your patient.  Breast cancer is devastating on many levels and when dealing with any kind of illness I believe that the patient should have a team of doctors  not just one.  So many things come into play when cancer is introduced to someone and it must be attacked on all levels. If the Dr. is not paying attention to what the patients concerns are then treating the disease alone will never solve the problem.  The pain is not in my head afterall...

If any of you need any help with With Post Mastectomy Pain Syndrome please go to this group at Facebook, I belong to it and it may be of help. Look for this: Post Breast Therapy Pain Syndrome And ask to enter. We are a closed group and we can only be added by the owner (for security reasons) Tell them that Loli-La Pains Ibarrola sent you. I have received a lot of of help from there, hope I can help someone too.

I am 40 years old with PMPS since my double mastectomy on 6/25/14. All of my treatment has been at MD Anderson. I had to stay an extra night after mastectomy because of pain. They called in someone from Pain Center to treat me and I've been following up with them since then. I have burning pain under arms that I describe as feeling like boils. I also have pain in chest wall. While my doctor at the Pain Center assured me he had seen this in patients before, I felt like an anomaly. My husband suggested I do an Internet search on pain under arms after mastectomy and up popped this board. What a relief to know I'm not crazy! Medication wise I've gone from Percocet to Lortab to Norco to Tramadol to Mobic. Tramadol and Mobic did nothing, but they refuse to put me back on narcotics. I also take Gabapebtin, but I reached top dosage with no relief so now they have me on Lyrica. We'll see how that works. Currently on 75mg, but they said they could double that if I needed. I've also recently been prescribed Lidocaine gel 5% topical which I find helps short-term, but it does help. I had a intercostal nerve block a few weeks ago that didn't help, so now I'm scheduled to have those same nerves "burned" at tips. This will require undergoing anesthesia. My dad had this done in his lower back and it helped, so I am praying. This is what I was wondering...while I have the pain pretty constantly certain activities seem to aggravate it. My reconstruction surgery certainly flared it up dramatically, but simply folding clothes or bringing in groceries tends to make it flare up. Even sitting at my computer typing for an extended period makes it hurt worse. Am I crazy? If not, I can't live like this. I'm an attorney and while I haven't returned to work since the mastectomy I can't see making it through a day with this condition. Also, I can't do any exercises that require use of my arms. I'm going to try simply walking tomorrow and see how I do. I've gained so much weight from not being active!! (I call it post mastectomy weight gain!). I've got to do something! What aggravates your pain? My Lidocaine gel is supposed to last me a month, but I can tell already I'm going to run out. Also, does anyone else have a doctor who is against prescribing narcotic pain medication for this syndrome? I found the Norco worked well. Oh yeah, I also find ibuprofen helps, but only in high dosages every 2-3 hours, but I've stopped that because of danger to liver. Thanks all!! Again, it was a huge relief to find this board!

Hi Rhonda:

I had my mastectomy in June of 08. Yup hurt everyday! Its never discussed by the Doctor before its done. I would have rather gone through 1000 lumpectomies had I known the pain I would have received from this surgery. Every body is different. My friend went through the same thing and had NO problems, no pain, NOTHING. Keeping my weight down, no caffein, and walking does help. I have no pain at night (thank God) but when my feet hit the floor in the morning it starts in. I tried  massage therapy and it worked great. However Medicare will only pay for a certain amount. You need to stretch out the chest muscles. EVERY DAY. If you lost some lymph nodes that makes it hurt even worse. The only way I can view this the fact that I am alive. Its a trade off. Don't give up. Try everything until you get it right. You will find something that works for you. YOu will be on my mind Rhonda. God bless you! Keep on keeping on!

On Feb 17, 2015 10:01 AM rhondasmith wrote:

I am 40 years old with PMPS since my double mastectomy on 6/25/14. All of my treatment has been at MD Anderson. I had to stay an extra night after mastectomy because of pain. They called in someone from Pain Center to treat me and I've been following up with them since then. I have burning pain under arms that I describe as feeling like boils. I also have pain in chest wall. While my doctor at the Pain Center assured me he had seen this in patients before, I felt like an anomaly. My husband suggested I do an Internet search on pain under arms after mastectomy and up popped this board. What a relief to know I'm not crazy! Medication wise I've gone from Percocet to Lortab to Norco to Tramadol to Mobic. Tramadol and Mobic did nothing, but they refuse to put me back on narcotics. I also take Gabapebtin, but I reached top dosage with no relief so now they have me on Lyrica. We'll see how that works. Currently on 75mg, but they said they could double that if I needed. I've also recently been prescribed Lidocaine gel 5% topical which I find helps short-term, but it does help. I had a intercostal nerve block a few weeks ago that didn't help, so now I'm scheduled to have those same nerves "burned" at tips. This will require undergoing anesthesia. My dad had this done in his lower back and it helped, so I am praying. This is what I was wondering...while I have the pain pretty constantly certain activities seem to aggravate it. My reconstruction surgery certainly flared it up dramatically, but simply folding clothes or bringing in groceries tends to make it flare up. Even sitting at my computer typing for an extended period makes it hurt worse. Am I crazy? If not, I can't live like this. I'm an attorney and while I haven't returned to work since the mastectomy I can't see making it through a day with this condition. Also, I can't do any exercises that require use of my arms. I'm going to try simply walking tomorrow and see how I do. I've gained so much weight from not being active!! (I call it post mastectomy weight gain!). I've got to do something! What aggravates your pain? My Lidocaine gel is supposed to last me a month, but I can tell already I'm going to run out. Also, does anyone else have a doctor who is against prescribing narcotic pain medication for this syndrome? I found the Norco worked well. Oh yeah, I also find ibuprofen helps, but only in high dosages every 2-3 hours, but I've stopped that because of danger to liver. Thanks all!! Again, it was a huge relief to find this board!

Rhonda, check out Facebook site Post Breast Surgery Pain Syndrome site too! Good luck. BMX 2008.  Julie

i just had a mastectomy and senital node removed on Feb 12. I feel pain from tg=he back of my shoulder and around to ribs and arm. I can run my finger down my arm and feel burning sensation and pain . Does anyone feel this way? Besides feeling numbe where your breast was does it ever feel heavy?

I have also had trouble getting my doctors to admit what is wrong. I have been in pain since I woke up from the mastectomy. I have tried so many treatments, over 35 pain treatments, not including a spinal cord stimulator. ( which didn't help at all) Is there any hope that this will improve with time? My surgery was in 2013.

On Apr 13, 2015 4:51 PM Choose50 wrote:

I have also had trouble getting my doctors to admit what is wrong. I have been in pain since I woke up from the mastectomy. I have tried so many treatments, over 35 pain treatments, not including a spinal cord stimulator. ( which didn't help at all) Is there any hope that this will improve with time? My surgery was in 2013.

Yes, I am hoping for you that you will improve with time.  For me, it took 3 years until I was on the right track with the right doctor, right pt program, acupuncture, and massage.  I also found an upper cervical specialist, but I think the best thing I did was stop aerobic exercise and core work and focus only on wall walking, walking, and biking.   The movement just was not good for me; I was diagnosed with rotator cuff following my mastectomy.   Good luck to you and I hope you will be out of pain soon.