Topic: Post Mastectomy Pain Syndrome (PMPS)

Forum: Pain — Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Jan 19, 2010 07:43PM - edited May 29, 2019 10:25AM by moderators

Posted on: Jan 19, 2010 07:43PM - edited May 29, 2019 10:25AM by moderators

Deeds wrote:

The purpose for this forum is to discuss the concerns of women experiencing pain several months following their mastectomy. A portion of an abstract from Pain Management Nursing, 2009, describes it this way:

Chronic neuropathic pain affects between 20% and 50% of women after their breast cancer treatment.
Breast cancer treatments are not without side effects; chronic neuropathic pain post-breast treatment (PPBT), also known as chronic post-mastectomy pain syndrome (PMPS), is one such
complication. This pain syndrome was first reported by (Wood (1978)) in the late 1970s; Foley and colleagues described the discrete set of symptoms in the 1980s. (Foley, 1987, Granek et al., 1984) In the last several decades, there has been a wide discrepancy in the reported prevalence of chronic neuropathic pain. Depending on the definition of chronic pain used by researchers,
incidence rates as low as 20% (Carpenter et al., 1998, Stevens et al., 1995) and as high as 50%or more (Fassoulaki et al., 2000, Maunsell et al., 1993, Tasmuth et al., 1995, Wallace et al., 1996) have been reported. Specific to the breast cancer population, (Selim et al., (2002)) estimate that between 200,000 to 400,000 women suffer from the symptoms of PPBT.

Thus, for women who are already devastated by the diagnosis of breast cancer and attempting to cope with the various treatment regimes, the additional suffering from chronic neuropathic pain can be physically and psychologically overwhelming.

Additional information regarding this condition can also be found on another community forum:

http://www.healingwell.com/community/default.aspx?f=14&m=1649831

We welcome your comments!

Edited by Mods to add additional information as the text link above is no longer available. For more information from Breastcancer.org, see our Podcast on Post-Mastectomy Pain Syndrome: What It Is and How Its Treated.

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Jan 30, 2022 07:35PM runnergirl26 wrote:

Hi all. I have lymphedema in my arm and hand which leaves me with a burning nerve type pain. Also across my whole chest I gave that same burning nerve pain. I also gave neuropathy in my feet. All this pain is so fatiguing. I take gabapentin but I can’t take during the day due to the side effects (it makes me feel really spacey and I sometimes have trouble with word finding. I can’t work while I take it so I just take it in the evenings.. Do any of you have that burning nerve pain?

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Jan 30, 2022 07:38PM minustwo wrote:

Runnergirl - have you tried switching to Lyrica? I don't take either but understand drug compositions are different.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 30, 2022 09:22PM serendipity09 wrote:

Runnergirl - I just weaned off of Lyrica, my last dose was Friday after dealing with neuropathy for years prior to It worsening due to chemo. I started Gabapentin a few months ago and since both are in the same "family" I was told to pick which one I want to stay on. Lyrica also had me feeling woozy during the days, they are both very similar. I figured I'd give gabapentin a try and see if it helps the neuropathy, so far I haven't noticed a difference, but again I still have Lyrica in my system as the half life is about 5/6 days.

It may be worth asking your doctor about the change.

Hope things get better for you.

"You can't wait until life isn't hard anymore, before you decide to be happy" - Nightbirde Dx IDC, ER-/PR-, HER2-
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Aug 3, 2022 03:09PM elizabethart wrote:

I haven't been on this forum since 2012 or 2013, and had to log on with a different name since I had forgotten mine, but I have some good news about my stabbing pain neuropathy. I'm happy to answer questions.

My pain is along the intercostal nerve, and if you really dig into googling "intercostal neuropathy/neuralgia mastectomy,' you might also find the info I recently found. Here's my experience with using some off-label anti-convulsant prescriptions, the first thing that has worked for me in 11 years.

I have had severe intercostal neuropathy since my bilateral mastectomy in 2011 because of my intercostal nerve being damaged on my left side (the right side mastectomy was prophylactic, so I don't think it was as severe a dissection).

No doctor made this diagnosis, no one seemed to know or understand the pain, and I've been through multiple PTs rounds, nerve blocks, nerve ablations, gabapentin, Lyrical, plus lots of other drugs.

My worst pain is under my left shoulder (scapula) in my back, with a stabbing pain that comes on strong then abates for 20 or so seconds, then feels like being stabbed again. This pain is completely off, threatening, or at 100%. There is no aching, no in-between. It ramps up quickly, and anything done with my arms brings it on. I am an artist and jeweler, and it has been very difficult to deal with. The pain makes me slightly nauseous and feel a bit frantic.

What has worked? Jamming something under my scapula can somewhat ease the pain slightly. I live in my TENS unit, though putting it on my back/shoulder accurately myself is a PITA. Tylenol 3 or other codeine pills work, but who wants to be constipated all the time, plus endure the passive aggressive pain clinic staff...

I also have a different pain in my left breast, in a horizontal line near my armpit. Whenever I wear any top that is a little tight, it feels like I'm being grabbed by pliers that are being twisted. I have dealt with this by wearing really big clothes. I can't wear a bra under any circumstances.

Finally, my third neurologist (a man, "I guess it is neuropathy", has done no looking into my case as far as I can tell), wasn't available, and I saw a PA. She told me about an anti-convulsant called Oxcarbazepine which was used off label sometimes for neuropathy.

What bliss..from the first dose I could work hard until 2-3pm with no pain, and if I wasn't going gung ho, sometimes made it through the day. She upped the prescription and I could go all day, and into the night (I do juried arts festivals, and work in spurts making pieces).

Then, a few weeks later, I thought I was having a stroke or heart attack. Felt like a painful anxiety attack in my chest. As it turns out, my sodium and potassium had fallen dangerously low (this medicine is know for it). I spent 3 days in the hospital while they slowly brought my sodium up, as neurological damage can happen if sodium is raised too quickly.

After going off the medication, the nerves were upset. My back was itching as the nerves regenerated or whatever was going on without the medicine. I was back to living in my TENS, and the pain was frequent and as bad as ever.

After I was given the all-clear, the Neurology PA prescribed Lamictal, which is in the same classification of drugs of Oxcarbazepine. It is not quite as effective, but it is helping. I asked today to have the dosage upped, and am waiting for a response.

And I was fully willing to go back to the original drug, the one that put me in the hospital. And I'm sure most of you understand that...if you haven't felt normal and have been in pain for years and years, it's seems worth anything to get back to "normal." But the PA wasn't comfortable with that.

*PSA...If you get put on Oxcarbazepine, insist on regular sodium and potassium level bloodwork!*

I have hope, finally, after 11 years dealing with this pain. I hope all of you find relief, and doctors and PAs that believe you and work to heal you. And I hope this helps someone find relief who may be suffering from the same pain with no relief.

One more piece...my nephrologist (as kidneys are the base of everything) in the hospital, who had final say in my care and release, told me that I had exhausted every medical option in this area, and that it was time to find a "center of excellence" for neuropathy. This is a center that treats neuropathy with multiple doctors in various fields. So a pharmacologist, neurologist, anesthetist, and other doctors work together to diagnose and find options. My closest option is Penn, and I plan to go there if this medicine doesn't work out as I'm hoping it will.

xo

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Aug 17, 2022 10:15AM jwoo wrote:

Hi all,

I had my DMX in 2013, and 2 DEIP surgeries in 2016. I have PMPS, especially on my prophy side (of course!) I would count my case as moderate (low level discomfort all the time with the occasional excruciating flare up.)

I haven't had a TDAP shot since before my DMX, but had to have one one 2 days ago. I've had other vaccines with regular side effects, and get all of them in my thigh or hip due to LE. Usually the SEs I get are that general fevery feeling, fatigue, injection site swelling, etc., but last night I had the most intense and longest PMPS episode I've ever experienced and a wondering if anyone else has had this happen after a TDAP. Also, The injection site on my thigh was far more painful than I remember it being in my arm, and I actually could not bear weight on my leg or bend my knee yesterday.

Just trying to narrow down the possible trigger as I know I'll need another TDAP at some point. Could be that it is the antibiotics they gave me, or just the fact that my body is working extra hard to heal the gnarly wound that preceded the shot and that is why my nervous system is unhappy. But the extra pain in the injection site made me think that I might be experiencing a more serious inflammatory response than usual that kicked off this episode in my chest.

If you've experienced this with the tetanus shot, please feel free to PM me or just respond below.


Thanks!

I don't understand how anyone can be okay with the suffering of others. I don't understand racism and bigotry. I don't understand the fear of others. I don't understand the hatred of people that just want to exist as who they are. America needs therapy.
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Dec 26, 2022 07:01PM themrslewis wrote:

Has anyone tried hyperbaric oxygen therapy to treat pain and heal? I am at the end of my rope. 3 months after radiation ended and it is getting worse. Feels like my skin is going to peel off. Less shooting pain now but intense burning all around breast, underarm, ribcage

Surgery 7/19/2022 Lumpectomy (Left); Lymph node removal (Left): Sentinel Dx IDC, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2-

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