Post Mastectomy Pain Syndrome (PMPS)

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.

Right there with you,lxcarr. I hate this crap. Welcome to BCO, you won't feel so alone, and will meet some great people. I am going to a pain doc, his solution? Reduce my pain pills. Yeah.

Sweetheart, I was going to tell you, you might not want to use your real name , unless you don't care if you can be found! I have been told by a neurologist at my treatment center that you can get nerve pain (neuropathy) anywhere in your body, and that chemo is famous for causing neuropathy. My pain doc, who I mostly like, kept me on a schedule of 5 number 10 percocet a day. With 6 regular strength tylenol. And 1 tablet of meloxicam, a drug used for arthritis. And one clonidine, that is used for blood pressure, that has been shown useful for pain management. And, I had shots in my spine for nerve pain in my breast , armpit, and ribcage. So, I had one brief month, last month, where I almost felt no pain a couple times. When I reported back to him , he was happy I felt better, so then reduced my percocet by one tablet a day. So, All this week I have tried this, and, its not working. Several parts of my body are screaming at me. And so, I think part of my trouble is the they gave me too much chemo on my last infusion.

Hi. I had a double mastectomy in 2008 from lobular carcinoma in situ with no lymph node involvement.

I had 4 months of chemo and am having alot of chest pain especially after swimming which I think is

scar tissue breaking up. Has anyone besides me still having pain? Everyday is different and there is no swelling in my

arm even though I had 11 nodes taken out.

Thanks

Just a few thoughts regarding discussion of: PMPS on this site. After looking at many discussions about other breast cancer related topics on this site it seems that post mastectomy pain is the only topic where women are encouraged to leave this group and go to Facebook if they want a meaningful resource and support on the topic of PMPS. What is it about discussion of PMPS that is so uncomfortable to members of this site that those of us suffering from this are shuttled to the side? Is there some fear that if women are aware of PMPS prior to breast cancer treatment they might forego treatment? or might ask surgeons about this usually undisclosed complication of breast surgery? When somewhere between 25and 60% of women undergoing breast cancer treatment have PMPS is it time to take this discussion out of the closet and bring it to the forefront along with other pre-treatment questions/discussions with surgeons and oncologists? Lastly, this site provides a great deal more privacy in terms of identification than Facebook and I think that many women. discouraged from discussing this topic here, have no acceptable format for resources and support. These are just a few of my observations as a member of both groups.

magiclight, I agree. I don't understand why BCO doesn't address PMPS and similar issues on their info pages. Their pain section on this website makes no mention of PMPS or abnormal post-surgical tightness. It's very vague and implies there is a pill that will help in some manner. Nowhere can I find info on how to deal with iron bra/iron corset (from my lat flap reconstruction) or how to deal with the feeling of being encased in cement or taped up with duct tape almost a year out from my surgery.

http://www.breastcancer.org/treatment/pain/types/persistent

I agree. I'm very sorry this thread has languished. I will not participate in Facebook discussions so have missed out on all the information that was taken private. Maybe someone on the facebook group would agree to post new ideas here?

My take-away from the FB groups is that there are a lot of women suffering without a lot of answers.

My input to all of this is that one needs to determine if one's post-mx/reconstruction issues are neurological or muscular/skeletal. My PS was very quick to diagnosis PMPS and suggest Gabapentin as the ultimate cure-all, but I'm not so sure.

Since waking up from uni-mx and lat-flap recontruction, I feel like I'm being crushed to death in a vice 24/7. The ultimate iron bra/iron corset.

I'm pretty sure my issues post-mx/post-lat flap reconstruction are muscular/skeletal. My PS said everything was neurological and my brain just needed to get used to it, and that a little Gabapentin would help.

Gabapentin did nothing for me. I suffered through 8 months of PT and an outside physiatrist w/o much success except for getting my back spasms and stuck scapula under control. I fired my PT group and my physiatrist after they both suggested I needed psychological help for my post-mx tightness and pain, when we were not making any more progress.

I just started with a new chiropractor who has devised her own post-mx protocol after treating current clients who developed bc. She quickly determined there was no protocol for post-mx PT/treatment, and has tried to come up with her own.

I have no idea if any of this would help with purely neurological issues. But she has a protocol that involves a machine that sucks up one's fascia (similar to a PhysioTouch machine, but a different name), Graston Technque (for scar release), general chiropractic adjustment, ultrasound and TENS machines. i just started today, so we'll see. At least there is someone who has a clinical interest in post-mx tightness.

She also mentioned a PT on the East Coast with a clinical interest in post-mx tightness and pain. His website is;

http://www.nephysical.com/conditions-we-treat/

There are certainly not a lot of answers and that is because there is, to my knowledge, little if any significant research on this topic that yields a prescribed plan of treatment. Most providers out there are coming up with their particular plan of care (as is my doc) but who is reporting on the efficacy of treating large numbers of people in a randomized clinical trial. If anyone knows of such a trial, I'm sure all of us sufferers would love to know about it.

If I understood the doc correctly the exercises go hand in hand with the rx regimen and if those do not work then trigger point injections like those done my Dr.Esserman @ UCSF are the next line but not until I tried the current regimen. Like I said earlier, it sure is 'best guess' practice rather than 'best practice'. Here is link to Dr. Esserman's work which is in its infancy.

http://www.ascopost.com/issues/september-10-2015/increased-interest-in-simple-injection-to-treat-women-with-postmastectomy-pain/

I, too, took gabapentin and it did nothing. 1800mg I think. Coming off of it, I now have tinnitus. I am, however, on topamax, 150mg, and I do think that may be helping to make the burning I feel--feel a bit more like tingling. Sometimes. The weather and stress can send me straight back to square one.

In addition to the iron bra, I have two frozen shoulders, a rotator cuff tear/sprain and bursitis and other stuff. My scapulars have been stuck down too. I have been doing about 6 months of PT. I started with myofascial release. Switched to traditional PT who specialized in MX. And went back to MFR. I love my new MFR PT. I am past my "allowed" insurance visits but I feel like we are getting somewhere. I have also seen a physiatrist. I had steroid/lidocaine shots in my shoulders and have started to regain more ROM. But I am still limited in getting jackets on, driving beyond 40 minutes. And they just ache.

I am in therapy. I meditate. I did this prophylactically last summer due to family history, abnormal biopsies/LCIS, ongoing breast discharge, my mom has a genetic mutation (that was discovered after the surgery but was strongly suspected given her number of cancer diagnoses).

Nash: You must be in great shape as a competitive skater, so I doubt there are any exercises of which you are not aware, but here are mine --I'm standing arms length from 90 degree wall intersection and with arms on wall leaning into it with arms at shoulder height; above shoulder height and below shoulder height; there is one where I stand with hip to wall and do a series of arm raises at imaginary clock positions of 12, 6; 3.9; 1,7, 11,5; 4,10 and 2, 8 and repeat on other side - repeat 2 x day. Will see!

Katy - I have found that water exercise is very beneficial. Unfortunately I have truncal lymphadema so I have to watch repetitive motions and wear sleeves for exercises. I wore them even in the pool. LE is a major deterrent to continuing my previous level of exercise but going to a certified LE PT definitely helped with some of the pain in chest & underarm. Just the release of the cording was wonderful.

I did not have any nodes removed. Although, when I spoke to a LE specialist--she said the surgery messes w/ lymphatic channels and wants me to come in. One day...it's a bit of a drive. Can you wear sleeves in the water MinusTwo?

Thank you Minustwo. Aside from PMPS, how do you like the gummies? I am having a sono next Thurs to see if I ruptured my right cohesive gel in a fall. Stupid uggs. I have a love/hate relationship with those boots! So cozy but no traction. I read about a new implant, not that I want anymore surgery but I also don't want any silicone floating around if I did bust this thing.

How about itching? I get so darn itchy on my chest and my back. It's insatiable sometimes. In the FB group, it is pretty common and at my MX exercise class, I also heard it was common. I even heard it from a friend who had a breast augmentation. Of course, I don't want to hear anyone having issues. But it's nice also not to feel alone. Or crazy!

Ah, yes, Whippetmom. She is brilliant with those things, isn't she. My original PS wouldn't listen to any outside opinion on sizing. Should have been an indication that things were going south between she and I. That and her insistence that I must have fibromyalgia. I have dry skin too. My dermatologist said find a new PS. She called the PS multiple times but the PS didn't even call her back. Told me if I didn't have skin cancer, she didn't need to talk to her.

I finally saw a rheumatologist--no fibro. Someone related to me must have fibro then according to the old PS. She had an answer for just about everything except when I wasn't getting my ROM back--that's not her specialty. But fibro was. Deep breaths. Glad you love your gummies. I slammed my breast pretty hard on the stairs. And it feels pretty weird. Like a bean bag. I hope it's not broken or ruptured. The peace of mind will be worth millions. If a sono is enough. I don't think I have enough range yet to do an MRI anyway. At least not as I remember the MRI. I found them to be pretty awful. And the MRI guided biopsies so many times worse.

Off to go ask Whippetmom. Thank you!!