Post Mastectomy Pain Syndrome (PMPS)
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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.
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reduce pain pills! That's horrible. My nerve pain is so bad. I can't believe this nightmare. No one can help and they slowly did give me Stronger meds that are controlled substance drugs. Like I want this unbearable stabbing and thumping nerve pain along with bone pain, Etc.
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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.
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it's really a damned if you do, damned if you don't situation...i have been on Oxy since a bad fall last summer & i swear my breast pain is worse because of it...I had some pain before but nothing like it is now. Not that the pain pills really get rid of the pain - in my case anyway - I feel they just adjust my mental state to a more positive one that helps me power through. So what i need is something else to create that same feeling - without the drugs. Get out & do more - but it's hard to do when you're constantly in pain...and so I take a pill & go
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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
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boyzbeebs, I am sorry you are still feeling pain. Earlier in this thread, there are the names of a couple of closed facebook groups where this topic is actively discussed. It is a great support. I am not a year out but have found it to be a wonderful resource!
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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.
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I agree with magiclight. Closed Facebook groups are not Private. You have to ask to join but anyone on Facebook can see members names in closed groups. See below. That is why I have not joined any of the FB groups. Thanks.
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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
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I don't know why the discussion moved away from here. I read through the whole entire thread when my PS finally said PMPS. Although, my husband and I were beginning to suspect that must be what it is. I was very involved with another group that encourages early detection and prevention in young women. No mention of PMPS. Anyway, the FB group has been a lifesaver for me. I felt very alone in this before.
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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?
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Minustwo: First let me say, you have a most inventive though obvious name! Wish I could be so original and obvious.
To keep this discussion topic going let me begin. Today I had my first visit with pain doc and at this time want to mention some exercises she gave me in addition, of course, to a plan of action including lidocaine patches and an antidepressant med. When I compared my level of ability to stand about a foot away from a 90 degree wall angle with arms bent and lean into the wall I could not get my nose anywhere near the wall and when family members tried it they almost touched the wall. Ha! and I thought the exercises I've been doing the past 10 months have been addressing my chest tightness. Long story short, I knew I needed a plan, and I underscore a prescribed plan that included a review of my medication (taking only gabapentin which has not helped) and a regimen of planned exercises specifically addressing my tight (did I say TIGHT vice like) chest and back. Now that I have a plan and a repeat visit in one month I have greater incentive to be disciplined enough to do the prescribed series of exercises along with some pain relief from new medications. Will all this work, obviously I do not know, but after all the reading most of us have done I think we mostly realize there is no magic formula even though the wishful thinking brain wishes there were. I feel like I am in a recovery program wherein I have to work the program every day, because like it or not that is my job. I will make an exercise calendar and post my daily workouts which are to be 30 minutes a day - 15 a.m. and p.m.; I will - I will!!
I am a member of the Facebook page and if I see some new ideas will post the link on this site.
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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/
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magiclight, we were posting at the same time. Best of luck with your new exercise regime, and please keep us posted.
I'd be interested in your prescribed exercises. Anything addressing posture has been useless to me so far. I am a competitive figure skater, and am almost back up to speed on the ice, and nothing helps so far. If there is something new I will try it.
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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.
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Balthus: Thanks for that great chart - I did not know it existed.
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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).
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katykids: Are you finding that therapy and meditation help handle the stresses of life which obviously, include your post surgical complications (I do consider all that you describe as complications from breast cancer therapy)? I will be starting desipramine as soon as I pick it up from pharmacy, however, there are insurance issues with filling rx for lidocaine patches. What those issues are I am not sure nor does the pharmacy, but will follow through tomorrow. I noticed that my rx for desipramine has 11 refills so that looks like a very long term therapy which is disheartening. I'll see how I do on that new rx - only time will tell. I hope you continue to get some relief from your topomax. I too find that weather changes likewise get me back to square one.
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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!
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I do find the meditation to be helpful with all of this. As far as the therapy, truth be told, I have been working on forgiving myself for choosing to do the prophylactic surgery. The outcome has been unexpected. With the big picture of my family history and the LCIS, my doc assures me it was necessary and only a matter of time. But I feel like therapy is a real onion being peeled. Layer by layer. I do feel good coming out. I am in NY and the weather has been so horrible lately--but we had a mild winter up until January. So, I can't complain. Too much.
Prior to all this, I was an avid exerciser. Weight lifting, yoga, pilates, TRX. I can't do any of that anymore. That was my old stress reliever. I do take a great exercise class locally with a group called Strength for Life. I am not sure how much they do across the US. It's with theraballs and bands. So much laughter. Which really does wonders for mind!
I got a cream, not Lidocaine. Voltrain or something. Also very expensive. Also, a bazillion tubes. Didn't do much. I would like to try lidocaine next. It worked wonders in my shoulders. I would like to try it elsewhere and will ask my physiatrist/pain dr. next visit. eta. and I have confused my drugs. desipramine is the anti-d. I take lexapro. I don't know if is helping but I started taking it after the implants didn't feel better than the TE, as promised by the PS.
Yesterday, I pointed out what I called a "pile of crap" under my arm, above my foob to my PT. I think she said it was pecs. Probably. She worked on it and it is so much better. Like amazingly better today. And we are going to work on the inframammary fold. I am supposed to start getting opposite hands on them now. And I can--now that I have a bit more ROM.
What a novel. Here's hoping for a good day...or decent. I will take decent. I am trying aquacise for the first time today.
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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.
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Minus two a decent day works for me, will post more later about exercise, meditation and therapy.
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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?
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katy - sure you can, but the custom sleeves are expensive and of course the chlorine wears them out even faster. The water does act as a counter balance pressure, but that only works if you keep your body totally submerged to the neck while doing exercises. If you haven't seen a certified LE therapist, you definitely should at least go get evaluated.
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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!
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I love my Allergan 410 gummies. It's been almost 5 years. I was fortunate the recurrent BC and ALND surgery was able to skirt around the implant so they're still there. With the cohesive gel so you don't get silicone free floating around so no worries there. Maybe a hunk, but it doesn't disburse through your body. Good luck with your sonogram.
You can check with Whippetmom on the Breast Implants Sizing 101 thread about the "Ideal" implant. She's really knowledgeable about all such things as fits & sizes & types.
Yes, my back itches all the time. I have to wear a compression bra 24/7 for the truncal LE and it gets warm under there. However this is not new for me since BC & I think mine is dry skin.
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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!!
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Nash: Did your PS say how long one's brain needs to get used to the vice gripping your chest? After my first visit to a pain specialist I was not encouraged with her comments about the years often needed for the brain to "adjust" and then she prescribed a year's worth of Lidocaine patches, so it looks like PMPS or as she calls it Complex Regional Pain Syndrome (perhaps for insurance purposes) and I are going to be together for a long time. I am trying to be optimistic and focus on how good my range of motion is even though I need work opening my scapula area.
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I'd like to address the FB thing - I think a lot of people prefer FB groups because they are easier to get around, and follow. Sometimes I've had to look through pages of stuff on BCO to see if anyone answered my question/post. I think that it would help if BCO worked more on a tiered system, so that when you posted a question/concern/etc.... someone could reply directly below it, so that it kept answers to your post right below the question. That way you don't have to wade through so much to see the answers. :-)
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Linda - I can see the attraction but I would miss the feeling of women sitting around the kitchen table all sharing their problems & ideas.
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