Post Mastectomy Pain Syndrome (PMPS)
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Hi Mommy,
So sorry you are having a difficult time! There is a wonderful thread on lymphedema here. That would be the best place to ask as the women are very knowledgable! There is a form of lymphedema (truncal LE) that affects the trunk/torso area. Many doctors don't know much about LE. Keep pursuing answers for whatever is causing your pain. Sorry I can't be more helpful, but do go to the LE thread and ask the experts! Best wishes for a speedy solution.
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This is my first post on this thread but know some of you (Hi Dulcigirl) from other threads. I'm not even sure what I have fits in PMPS, but it IS pain, and it has been constant since my BMX six months ago. Yesterday I saw my PS and again described it to him, but he says he has never heard of this from anyone else. In the months I've been on BCO, I've never heard of it either.
I get a rush of pain just in my foobs every time I stand up. I believe part of the problem is like the phantom pain you read about because it feels like the pins and needles intensify as it spreads all through my breasts, and that's obviously not the case since I don't have breasts anymore..If anyone here has breastfed for a while, it's like the strongest letdown feeling, just so much more intense. The pain makes me gasp and moan every time, especially when I've been down for a long time. Mornings are especially bad. I kind of have to talk myself into getting out of bed each day because I know the pain is coming. If I cover each foob with my hands and press really hard as I stand, it's not as bad. Using that logic, I've tried sleeping in snug sports bras, hoping that the compression would help, but after a few hours, it hurts so much it wakes me up and I have to take the bra off. I've tried wearing a soft stretchy bra too and it makes no difference whatsoever. If I wear either a tight or loose bra in the daytime, it doesn't help. I'm good until I stand up.
This feeling only lasts about 5 seconds and does not reappear until the next time I've been sitting down for an hour or more and then get up. It doesn't happen if I'm busy walking around or standing in the kitchen, and then take a quick bathroom break. I can sit down and back up with no problem. It's definitely related to how long I've been down, I think. It started the first time I stood up after the BMX. I remember the intense rush of pain across my chest that I suppose everyone gets. During the recovery period the intensity faded within a couple of weeks, as expected. It just never went away for me.
I've had two more surgeries since the BMX but it has not affected this phenomenon one way or the other. It's there before each surgery and after as well. When the pain from the new surgery goes away, I'm still left with it.
Gabapentin is not an option due to side effects. Lydocaine patches were great for TE pain, but never had an effect on this condition. Creams take too long to make a difference. I'm allergic to narcotics and opiates so I can only take Tylenol, but I don't need pain relief for hours...only for 5 seconds every few hours. I feel sure it is nerve pain of some sort. Does it sound like a particular nerve was injured in the BMX or a combination of nerves? Muscles? You guys have seen a lot and gone through a lot yourselves. What do you think? Just be glad it isn't worse and press on with life?
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Sandra, so sorry you are suffering such frequent bouts of pain. I had a UMX on my right breast and I too get pretty severe pain that just suddenly appears and then subsides. I do not get it daily but I never know when it will come or what may cause it to appear. I just think it must be nerve damage and will eventually resolve itself. I did not have reconstructive surgery because I just did not want to face additional potential complications. The pain that I experience is pretty fierce while it lasts but thankfully subsides rather quickly. My major discomfort comes from the removal of the large tumor that was in my armpit. It is very tight and even though I have had PT, my range of movement is still limited. it is also difficult to get comfortable while lying down so my sleep is not the best.
Perhaps you could be referred for PT which might help your pain to lessen. Wishing you the best.
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I had it. It subsided with me after two years. I had a sentinel node for the other breast..some pain but not nearly as much as aux dissection! I just cancelled appointment for reconstruction. I just don't want damaged nerves to rear their ugly heads...and maybe stick around permanently......not for breasts anyways. Most people don't know whether you have real or not, and I don't mind staying flat, looking in the mirror etc. I had cancer. So far, I have survived cancer. That is all that matters to me.
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Thanks for your input. Maybe it will go away. I'm only six months into this journey.
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If Tylenol works for you, get the ones that are quick release. We used to call them "quickies". When you have surgery anywhere, nerves and muscles are cut. What made me hopeful was a guy who had major surgery with his lungs and had three years of pain before it went away. My doctor's brother had a huge tumor removed from his face and had pain for a year before it went away. And a friend's brother that HUGE injury.....told him he'd never walk again.....no feeling in feet...then pins and needles...then pain.....after three years, he is walking. NEVER GIVE UP HOPE. And ALWAYS try to manage you pain rather than chase it around. I was told that your brain will hardwire it to become chronic. So by no means let that pain stick around.....for the first year, I was taking slow release tylenol, close to but never over 4000 units per day.....it helped, as did, oddly, ativan but now I understand that muscle tension also creates pain....so maybe muscle relaxants? Anticipatory pain could contribute too.....but not to worry. Nerves take time and even now, if I do too much lifting, my arm pain comes back (but never as bad as the first year). Sandra, I truly hope this all works for you and six months is still very early. ((((HUGS)))
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Bluepearl, thanks so much for your reply. Perhaps I came off Tylenol too early and my brain is doing what you said. I have my fourth surgery Mar. 21st so I'll try to begin that recovery just like it's the first and keep a constant level of Tylenol. Worth a try. Since Tylenol is my only source of pain relief, I'm always quite judicious about it's use and never take it unless I'm really hurting. I just try to deal with the pain until it gets the better of me so I am chasing it, as you say. Perhaps that was the wrong approach. I'm anxious to try your suggestions. I know that the anticipatory factor is there. I really do have to talk myself into standing up, especially in the morning or if I've spent a long time in the recliner and know it's going to be especially strong. I haven't tried Ativan. I did, however, get Valium after my second surgery when the muscles spasms suddenly appeared. (Didn't have them after the first surgery.) I took only one 5 mg tablet but it helped. For the third surgery I started on it right after surgery and did not have to wait for the nurse to call the doctor and get it approved. I'm going to ask for something for this next surgery too. Is Ativan stronger than Valium or different in some way?
One more question: I went to the Facebook page mentioned in previous posts on this thread. I put in a Friend request five days ago but it hasn't been accepted yet. Should I do something other than that? If not, I'll just be patient and keep checking back from time to time.
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Hi Sandra. Im sorry that you are going thru this. I wanted to tell you some suggestions that helped me after my first surgery. I was told to lightly rub the skin area to help desensitize it and I thought it was crazy but I did it and it worked. So I always looked like a fool at work rubbing my tissue expanders and side. It did start to work. I also used ice packs all of the time. Then I had the exchange surgery and didn't have too many problems until I got sick with cellulitis and a bad cough and I cracked a rib on my radiated/alnd side and have had problems ever since. I had intercostal nerve blocks which lasted for 5 months then I got sick with the bad cough again and I think I reinjured the rib and the nerve pain about killed me. I got the nerve blocks 1 week ago and it has helped with the severity of the pain but if I cough or sneeze I still feel like its a broke rib. I was told today that I just have to heal. I can get these injections every 3 months if needed but im hoping it will just go away. Unfortunately, when we are hit with a diagnosis of breast cancer we don't have the option of asking what damage the treatments and surgeries will cause because a cracked rib or fried nerve is still better than cancer. Or so I am telling myself. lol. As someone who has gone thru this since July 2012 I can say to try PT and the lymphedema PT. Learn how to do the Lymphatic manual drainage because it could help you and certainly wont hurt you. Dulcigirl is smart to send you to the Lymphedema thread because they are really smart about the subject. Try to desensitize the area by massaging it. I was told not to use ice but it helped me however I was going thru chemopause and could melt an icecube on my forehead. lol Goodluck and healing hugs
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Melmcbee,
Thank you for your ideas. Hopefully one will work for me too. Like you say, it couldn't hurt!
I feel so sorry for you going through all that pain for so long. I once had pneumonia and broke a rib by coughing. That was some of the worst pain ever and so debilitating. You poor kid. I'm glad the injections help and hope one day you wake up and it's just - poof - gone!
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Yes, massage works too! I used aloe vera gel and sometimes a muscle pain cream.
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I had a lumpectomy in 2013, a couple of months later, the pain in my neck was traveling to my shoulder, down my arm, affecting my elbow, wrist and sometimes fingers. Upon re-visiting my Surgeon, he looked at me like I was crazy. I was sent to physical therapy for six weeks, nothing helped. Finally I found acupuncture was the answer to my problems. It took 4-6 visits, before I saw a substantial improvement. I now go once a week and am happy to say... I'm back to being 98% normal. Ok, the new normal.
IDC Her 2+
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My mother was a nurse and worked for a group of doctors. They hired a Chinese doctor who did acupuncture and my mother was so angry. She said he was just a quack and wanted to quit. Then she started to see long-term patients experience progress and pain relief. She ended up quitting...but to go to work for Dr.Ho, who opened his own practice! He was a miracle worker. One time when I was visiting, I went to see him for elbow tendinitis. I'd been through weeks of physical therapy with no progress, but after 5 days with Dr. Ho, I was pain free and it's never been back.
My husband works in the famous burn clinic at Ft. Sam Houston in San Antonio. He's always telling me about how much their acupuncture doctor helps these young soldiers who've been horribly burned. It works!
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Hello, Rozem!
I am looking for long time for somebody in Toronto area with PMPS. Could you please send me a private message?
We could exchange opinions and help each other!!
I am with PMPS for 3 years
Hugs Sonia
(Edited by Mods to delete member's personal email address. We strongly recommend not posting personal information on a public forum, for your own privacy and security. Please exchange contact information using the Private Message feature.)
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It has been so long since I have been on here I had to create a new account.....
I had a Bilat Mastectomy 7 years ago with node removal when I was 27, I had immediate recon with expanders then radiation. However the radiation caused tissue damage and many many infections leading to the loss of three implants and ultimately a Latimus flap a year later on radiation side, another ex pander then finally a Silicone "Gummy Bear" implant.
2 months ago I noticed in my armpit that has had no feeling for 7 years suddenly has pain, burning pain, I looked in the mirror and I had a red "hole" I went to GP and when he looked at it is caused searing nerve pain to the point I jumped and yelled. And I am pretty tough when it comes to pain. He gave me antibiotics and sent me home.
I still have the hole and it is expanding, he doesn't seem to worried however the pain is getting worse. I still have no feeling when I touch the skin, but the pain is radiating and goes down my arm in a burning way. The worst time has been at night I have to lay on opposite side with arm elevated above head to relieve the pain. The last two days it has started to bother me during the day as well....
Has anyone had anything like this? I am very concerned and in constant pain
Michelle
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Oh gosh Momof2, Im so sorry that you are in pain. I don't know why you are experiencing it. I have had to have steroid injections in my back cause of nerve pain from my surgeries but they were more rcent then yours so I don't know if that is why. I can tell you that it was a pain management doctor that was finally able to handle it. However the hole you are referring to concerns me. I would call either your breast surgeon or oncologist and see if they have any ideas. I so hope you get some help.
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Thank you for the reply melmcbee
I thought my self it is very strange... It has been so long since I saw my PS that I am waiting to get referral..... and I have moved away from the area so now waiting for a call from new oncologist....
I hate having the fear of "what it is" I am sure they will figure it out in time just frustrating, and I remembered how helpful these boards were when going through dx and treatment
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Hi Michelle,
I am 10 years out from radiation but last summer I developed severe darting pains through my right arm. I went through all the tests and x-rays - blah blah blah and was certain it was cording. Good thing I didn't waste money on private physio cause it turned out to be radiation-induced brachial plexopathy or RIBP (nerve damage in the arm and shoulder). Basically same type of nerve damage as in the chest wall only in this case, some women lose complete use of their hand......eeeeek! They suggested I take Lyrica. Ha! You should see the side effects listed for this drug. That alone would kill me cause I'm so sensitive. I noticed there is a message board group on this website dedicated to RIBP. I'm not saying that's what's happening in your case - but the symptoms sound the same as mine. When it really hurts my husband does a deep massage with muscle cream. It hurts a lot but then feels a whole lot better afterwards. Oh - and it took doctors 4 months to finally figure out what I had. Hope this helps...
From another Michelle
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Solticegirl, I didn't even think that radiation could be the cause of mine. I mentioned my pain to my radiation therapists friend and he was kind of huffy by saying they didn't give me enough radiation to cause burned nerves or whatever. lol. I told him of course I didn't believe he had anything to do with it. lol But I always wondered....
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I didn't even think about possible radiation issues.... I had 32 radiation treatments...and many many infections and issues. It has been a bad couple of months severe migraines- which were actually sinus infection that wont go away, this stupid armpit pain ugggggg.
I was starting to think maybe it was silicone leaking or something (even though I know rare with a cohesive gel implant.
Which of your doctors was the one to figure this out.... I find I go to one they say not my dept talk to another and so on and so on.... Like no one wants to take it on
Hmmm maybe I will get massage from hubby
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Michelle, we're sorry this has brought you back to BCO, but hope you'll find the support and information you need again. Let us know by PM if you want to return to your former name from 2006 - we can help if you like.
• The Mods
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Hi Momof2
It was my oncologist who proudly told me that I had nerve damage caused by radiation and told me not to bother with Physio. In fact most of my issues have all been caused by radiation including a cancer recurrence in the radiated spot 10 years later. Because I opted out of chemo at the time, they gave me "extra" radiation, which inadvertently caused cancer. (It happens more often than you'd think) During radiation I experienced two fractured ribs and bleeding through my pores. My skin peeled off as well. Then I went through years of unbelievable rib pain which has finally subsided but gave way to this newer arm pain that shows up between 5 and 10 years out of radiation. Also - because of radiation I can't have any kind of reconstruction because the blood vessels are so damaged it wouldn't heal. Which is exactly what happened during my last mastectomy. The incision became infected and I ended up at a wound specialist. It finally healed over but I'm left with a large gapping scar. That's the short story - I could go on and on. Gotta love radiation eh?
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WOW I thought I was the only unlucky RAD patient out there, I lost three implants because my exchange was done after rads. Many infections and then we finally did the Dorsi Lat Flap and thought I was free of complications.
With all this pain I have been extra paying attention to changes and have noticed a large lymph node on same rad side, sitting just above my collar bone. When I run my hand down I can actually pull it over the collar bone. I am freaked out that this could be cancer again..... How did you discover a recurrence... Has anyone had a Lymph node like this?
Very scared.......
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A couple months ago I had an ultrasound of nodes above my collar bone because I had swelling & could feel some big nodes too. It was all clear. But it scared me to death.
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I was able to get my old account back so will now be using too_young_momof2
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Momof2 or Tooyoung - Call your MO or BS to check out the lump as soon as possible. I didn't have any lymph involvement the first time. The 2 SNB on each side were both clean. But at my 2 year check up there was a lump under my collar bone. I insisted on immediate ULS and they ended up doing an ULS biopsy to see what it was. It turned out to be mets or recurrence to the lymph nodes on one side - IDC instead of DCIS. I sure don't want do scare you and I hope yours is just a swollen node with no further problems. P{lease let us know.
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Thank you MinusTwo I sent you a PM as well..... Hopefuly one of my Dr's will be back in office soon cant seem to get a appoinment with anyone
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Well... I get my ultra sound on Wednesday for Palpable Lymph Node on Supraclavicular fingers crossed for good news!
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too young....
Fingers (and toes!) crossed with you!
Prayers for a speedy "all clear!"
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TooYoung - so glad that the doc worked you in and scheduled the ULS. We'll be thinking about you Wednesday. Hope it's "nothing" but please let us know.
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Thank you! I will for sure let you all know, it nice to know you are all here
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