Post Mastectomy Pain Syndrome (PMPS)
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At 7 months post BLM I am still surprised that I need daily stretching to just keep the pain level at a 5. I can see my scars move over my chest when I stretch, so do not think I have adhesions but I sure can fell the initial pain when I stretch and then it decreases after stretching.
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Notbuyingi - the facebook page has lots to offer in the way of support and stories shared of the suffering that PMPS causes to more women than the medical community practicing at the bedside admits. From my reading of many postings it seems it is always the fault of some other provider - in your case the rads. My BS certainly does not acknowledge the 25% or greater # of women with PMPS.
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I believe that my issues were caused by a combination of all of my treatments, and the way my body heals. I think that each of my medial providers did an awesome job, but the combination of all the treatments left me disabled.
I'm 5 1/2 years post diagnosis, and I still have all of the issues, if get busy and don't do my stretching for a few days the adhesions all start to grab hold again. I think this is just my new normal. 
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i refuse to accept that chronic pain has to be my "new normal" - un happily i have started on Lyrica - so many negative comments in these threads - plus i hate the thought of being reliant on drugs forever.
so, ladies, what kind of exercises and stretches are we talking about? i did try scar massage once but it's hard to relax having someone massage your boob - you'd think we'd be immune by now
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Linda, since the group is secret, nobody can see outside the group! :-)
https://www.facebook.com/groups/759940397434876/
Nice to read you here too!
Gentle hug
Sonia
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Can't see what's on FaceBook, but I think that others can see what we post on breastcancer.org. Moderators?
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I am so glad to have found this thread. I am just over 5 years out and still have pain and swelling. Had double mast. The pain is in one arm (not the one the lymph nodes were removed from), very bad in breast area and scar underneath, down opposite trunk and now in one lower leg. My leg isn't to bad, just a regular stocking will work. But I have been in compression for the past 5 years day and night. Pain meds affect my ability to drive.
Is it to late to get PT for this ?
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I don't think it's ever too late - I'm over 5 years out and just got done with PT again to help with it. Just find a PT that actually has worked with these types of issues before.
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Thank you, Linda. I had tried 4 LE therapists before I found one I thought was really helpful. She was "LANA" certified, a different technique.
I was wondering if the "pump" might be of some help at this point. For any of you that have the pump, do you need a medical RX to get one ? How much relief do you get from the pump and is it lasting relief ?
Thanks
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I am sorry to see so many here and read the whole thread from the beginning. Wish I had before I let my doctors talk me into this 'life saving' prophylactic BMX. With perfect breasts. I liked mine fine before. Admittedly, yearly MRIs and multiple biopsies were awful but this everyday pain is far worse. I have 4 incisions--3 hurt. I have limited ROM. Pain in my right arm. Tingling in my fingers. Burning in my breasts. My neck hurts. I used to go to the gym 5 days a week and now I can't unload the dishwasher.
I am doing PT 2x week with a mastectomy PT person. I want to go back to acupuncture. How does one fit it all in?
My marriage is challenged and I haven't been a great mom. Or daughter. My mom has cancer again. She has had it so many times and survived I should have left well enough alone.
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Aw Katy,
I am sorry things are so overwhelming. Chronic pain makes it difficult to have anything else on our plates. Be kind to yourself, many times it takes just as long to heal as the time we spent in treatment.
Take care of yourself. Sometimes we need to focus on getting better before we can be there for others. It feels selfish, but it truly is important.
I hope things start to turn around for you.
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In 1992 I had an accident at work that resulted in chronic pain throughout the whole left side of my body. I remember curling up on my bed hoping that the house would burn down with me in it because I could not take the pain anymore. BUT over time and with the help of an extensive pain control program - I got better. Compared to the new pain from cancer treatments, my old pain I barely feel the "old" pain. Knowing this keeps me going. I know that if I continue to work at it, the PMPS will also be under control eventually. I will never be able to go back to my old life, but as I learned before, that's okay. I discovered that I enjoyed working with my brain and found exercise programs that worked for me. I walked over an hour every day most days closer to 2 hours - in the morning, after work and then again before bed. I'm beginning to get back into walking although it is only for a maximum or 20 minutes right now that will improve.
So to all my sisters out there who are suffering with this horrible pain take heart it will get better!
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Thank you Robin. Trying to take more walks and started acupuncture after all! My husband drove me. I have done it before for headaches with no relief but this has seemed to take the pain down a notch.
Thinking out loud--it surprises me how the different spots have different turns with pain. Sometimes the left incision hurts. Other times the right suture spot hurts. And other times the right fat graft spot stings.
3 different bras again yesterday and maybe 10 minutes without one--and it felt like there was one on anyway. I tried a Coobie. That lasted for a good bit. But, by the end of the day, I had to check the package to make sure they really sent a Lg and not a Md by mistake. I am on the hunt for a fitted tank top that has no seam or support under the boobs that I can pull on because of limited ROM.
Stupid things feel like they are humming right now.
I hope you had a Happy Thanksgiving!
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Heey there,
I had a lot of issues after having bilateral mastectomy and radiation. I was blessed with a great physical therapist who basically spent a year helping me with stretches and exercises that significantly improved my range of motion. I would encourage you to try that in addition to the medical marijuana. I am a federal employee, therefore cannot take that, but that would be my choice over any other pain med. It's natural with less side affects. Best of luck in your recovery. Keep trying to gently stretch every day and massage the areas as well.
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Thank you rennamr. That is not legal in my state yet.
And I have never smoked it as the smell makes me nuts. Like cilantro! But I hear there is an oil form for capsules. I am doing PT with someone who has experience with MX. Just 6 sessions in and I need to accept that Rome wasn't built (or rebuilt) in a day. Your improvement is encouraging. Thank you!0 -
rennamr , I take Nabilone ( Cesamet- pharmaceutical marijuana). It is with doctor's prescription. I cannot say whether it helps me or not! But I take them since 2012.
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Because you have been doing these stretches and exercises, are both arms still the same size as each other? My left am, that was the side that had radiation, is smaller now especially at the wrist
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wirdgirl, gabapentin/neurontin was doing nothing for me to improve pain. i have just decided to accept it for what it is and try to find my "new normal" with distractions of exercise, yoga, etc.
I am sorry. I hope you find better answers. before all of this, I was an avid exerciser, I don't think it would be a bad idea to exercise both arms if you are concerned. I don't think it can hurt. I had a bilateral MX so I always work both arms.
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Hiya. I've had a read of the last 1/4 of these posts and they have helped me become more educated. Thank you everyone for this forum
I had PMPS for a few years post BMX (surgery was April 2011). I quit all the pain meds within the past year to two years depending on the medication. I took gabapentin (neurontin), pregabalin (lyrica) and amytriptaline. They helped me cope with the pain. I also took an antidepressant venlafaxine (effexor). I also had some PT, acupuncture, cranial sacral massage and chiropractic manipulations and they all helped. I currently still have a weekly massage. I also do stretching as I was taught to do. This is probably the best thing I do for my nerve pain.
Anyway, all was good until the past few months. The pain in one of my breasts has increased - it feels like I want to scratch it off - if that makes sense - it feels "deep". Some of it is nerve pain, I know because I recognise it, but it seems very intense. I don't understand why it is getting worse rather than better.
Some of the pain seems to be coming from some of the area where there is scar tissue from my reconstruction and that worries me. Also, when I lie on my stomach for my massage this breast is very painful - painful like before I had my surgery.
I'm worrying I could be facing a reoccurrence but I'm trying to get my head in the place that maybe it's just nerve endings regenerating.
Anyway, I would be grateful for any ideas and support.
Thank you.
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@ Lifelover Can you please send again the request for the FB group?
Regards
Sonia
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i interact with two FB groups: Surviving Post Mastectomy Syndrome & Post Breast Therapy Pain Syndrome - they show as closed groups but request to join. I like these because the posts & responses do not show to all of your "friends". Lots of good info & comfort
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Are any of the FB Groups "secret" versus "closed"?
Even if a group is closed, anyone can find the group and see who is in it.
https://www.facebook.com/help/220336891328465
Thanks.
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"Surviving Post Mastectomy Syndrome " is a close group. Once you click on the address https://www.facebook.com/groups/759940397434876/ I will give the accept to the group!
From outside of the grup cannot seen any post by those who are not in the group!
We are already a group of 100+ members and glad to be helpful! I quote from the group description:
"We hope that each one of you receives what we all need: camaraderie unique to our shared condition; an exchange of information, experiences, and suggestions offered to reduce or overcome our pain, and enhance continued fulfillment of our individual aspirations"
Gentle hugs to you Ladies!
Sonia
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I am also a member of the Surviving Post Mastectomy Pain group on Facebook and am curious if anyone knows why there was a need to move the topic of PMPS to a Facebook group.
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Since I don't do Facebook, I am sorry this subject has mostly moved.
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I have joined the Facebook group - but still check here - actually didn't realize there was a group here on this topic til recently. I just find the FB group to be a more up to the minute discussion. I can post a question or read a question & have an immediate discussion happening. Here I could check back & have no response for days or none at all
not necessarily this discussion group as I have just joined it, but has been my experience with others. That's my take on it, anyway, for what it's worth!0 -
Thanks, I agree re: fast feedback and discussion of many options for dealing with (as of yet no curing of) PMPS. I have just made and initial contact with pain management doc and once I get records from surgeon and primary care doc sent, will set up appt. Will report back on Facebook as that is where there is more discussion occurs about this awful pain syndrome. Fingers crossed and hopeful.
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I am here, have been reading all the posts from the beginning. Sorry, I just don't do face book. Ick. I have only had a lumpectomy, but had 25 big and juicy nodes taken out that were entirely replaced by cancer. I am finally, almost four years later, seeing a pain doc at my treatment place, but was there just bawling today. I also am having pain from being on anti estrogen therapy, and am taking so many different kind of pain pills its ridiculous. Guess its time to do the marijuana. I am also just plain sick of going there for follow ups. I am glad you guys are here.
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Hi Tomboy: Your pain and frustration sound excruciating. Finding a pain doc who can really hear what is behind your tears would be great - and I hope you have finally found that person. I can relate to your comment about going for follow ups as I use a red dot reminder of doctor appts on my calendar and some months it is obviously way too frequent. A couple of weeks with no medical care appts feels like a vacation. There are many women with post cancer therapy pain whether from surgery, rads, and or chemo that take marijuana so you might search for that term in the discussions and find their stories. Best of luck in finding what is right for you.
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I'm had a bilateral Mastectomy in July 2015. My left side had a high grade cancer and 4 lymphnodes removed. I continue with chronic nerve pain across my chest on left. I have this tennis ball effect under my left arm which is so annoying. I was told that is nerve pain. I am on medication. Have limited arm motion and will be going to physical therapy in early April 2016. I had my breast Expanders removed on both sides. The left where all the problems are had an extender that was inflamed and literally had to be cut out in 3 sections and a seroma. I was hoping that removing the extender would relieve my nerve pain. It did not relieve any pain. I'm chronic fatigued from chemo and radiation and have bone and hip pain. My fingers are stiff and getting up in the am is Hell. My meds kick in and I have unpredictable days. At times it is rest in bed and other times I feel well enough to do light house duty. I am being forced by Hartford long term to apply for social security. A stress I don't need. Anyone here have similar nightmare with chronic pain and fatigue along with bone pain.
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