Post Mastectomy Pain Syndrome (PMPS)
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i am figuring i am the only one left in pain... Im glad for everyone
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Beacher, have you tried massage for the area? Also, did not read your entire thread, but when was your surgery. Things may get better as time progresses. I'm finding that most docs don't know much about this--the surgeons and oncs. sort of dismiss you as soon as they surg. is over as they have to attend to their newly-diagnosed patients. If you had reconstruction your PS may be familiar with it. If the skin is tender to the touch people seem to have gotten relief with various topical drugs.
I'm finding this very frustrating to deal with as it's so "out there" that most docs either don't know what it is or rarely see it. The only one who seems to know about it is the plastic surgeon, and he didn't offer any "cures" other than massage. I have been helped by stretching exercises as I have a lot of scar tissue. The whole thing loosened up with gentle stretching but it hurts initially. Also I used corn starch for sensitive skin to keep down the rubbing on clothes.
Don't know if any of this is new or helpful but I do sympathize with what you're going through. My MX was a year ago so I'm ready for this to be over.
Love to you,
Lynda (Dragonflymary)
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hi Dragonfly, i went to a pt on friday that is very good at working with axillary web syndrome, that is what i have under my left armpit going down my arm causing the pain,the feeling of iron bars in there. if that is what you feel you should find a pt usaully a lymphadema pt ,but not all are familiar with it. there is a web site called step up speakup and they have a whole disciption on that topic and alot more if u cannot find it let me know i will try to lookit up again and get it for u. talk soon thanks for caring karin
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Dragonfly, here is the website Beacher mentions. It is incredibly helpful - lots of excellent, accurate info that is current.
http://www.stepup-speakout.org/0 -
beacher and Tina, Thanks for the info. I'll try the website right away. Dragon
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thanks tina i got busy with a few friends i had not spent time with in this pass "hell" year glad u got that website info out there again! Got to say though seeing my old gal pals and playing all weekend was a blast ..the best therapy:)
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Thanks to all who posted the truncal lymphadema website. I have ordered a compression camisole and hope it helps. Re: the pain after breast reduction (Birdlady), I had another friend who experienced that same thing. I'm starting to think that any tissue removal in the breast/chest area is a set up for post-op issues. I did look at my back in the mirror and it looked exactly like the ones on the trunk lymphadema page. My PCP was very sympathetic and was willing to read up on this in order to guide treatment. For now, after about noon my back is useless--just feels like I'm holding up a couple of bowling balls! And wow, I'm a truly awful bowler...
Lynda
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Lynda, how wonderful your PCP is willing to read and educate herself/himself about lymphedema so they can help you and other patients. That is truly amazing and I am impressed! I can't tell you how many stories I've heard about doctors who are unwilling to help patients get properly diagnosed and treated and who even deny their patients have LE.
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Tina, I think that's true. So many women have had the "brush off" from doctors who think we're neurotic, or that things are "all in our heads." My doc probably listens more to me as she knows I'm a nurse, but if I can educate her about lymphedema and post-MX pain I will have done something for all her future patients.
I got an "easy" yoga DVD and it's going pretty well. I honestly think I'm going to just ditch the exercises the PT gave me and do slow yoga. The stretching seems to do something for pain relief. Will keep trying it anyway.
I've realized now that our medical system does a great job with acute illnesses and trauma, but not very well with chronic stuff and rehab. Many docs, esp. surgeons, just don't want to discuss any post-op problems. They are busy with their newly diagnosed patients and don't really have time for follow up. That's okay, but finding follow up is a challenge.
Love to all,
Lynda
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Lynda, I forgot to mention that the Step Up Speak Out site has a section on how to find a qualified lymphedema therapist in your area. The therapist will perform manual lymphatic drainage exercises to reduce the swelling and teach you how to perform the exercises on yourself. It is my understanding that compression garments help prevent further swelling, while the drainage exercises are necessary to reduce swelling, especially in the initial stages of treatment. If you pop on over to the lymphdema forum, there are knowledgeable women there who can answer many of your questions. Binney and Kira are two of the women responsible for creating the Step Up Speak Out site, and they are incredibly kind and helpful.
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I'm going to jump onto this thread...
I may very well be facing PMPS dx. I'm going back to MD Anderson Sept 12 to see a new PS & hopefully get referred to a *real* pain management doctor if necessary.
I've had a lot of crazy stuff happen in the 2 years since I was diagnosed (20 wks pregnant at dx, "lumpectomy"/biopsy done w/o anesthesia, FAC x4 while pregnant, normal delivery, Taxol x2, Taxotere x1 (neuropathy w/ Taxol then allergic rx to Taxotere), BM w/ expander recon, PBSO with over 2 units blood necessary since I almost bled to death, emergency Hyst from abscess that formed after PBSO one month later, and exchange surgery. I have 800cc implants to replace my DD/DDD natural breasts. Oh, & all this was before my 30th birthday. I have a soon-to-be 2 year old daughter (my chemo baby), a soon-to-be 4 year old son, a husband of soon-to-be 5 years, a full-time high-stress job (the only $$ our family can live on), and commute 70 miles a day 5 days a week.
Its been 6 months since my exchange surgery & by the end of the day I can hardly stand the pain in my chest, neck, collar-bones, & arms. Sometimes its sharp & stabbing, but othertimes its achy and 'tight'. Its almost always non-specific (ie my whole chest hurts, not just one spot). I feel like I hit my "funny-bone" only it extends up to my shoulder & neck as well as into my hands sometimes. I'm allergic to Lyrica/Neurontin (I tried it for chemo-neuropathy) & the narcotics just don't seem to be doing anything. The best relief I get is from a muscle relaxer and/or the Voltaren gel that I just recently started using.
I've tried some theraputic massage -- I was so sore I could hardly move for a couple days afterwards. I'm in the midst of chiropractic care to help my spine cope with compensating for my painful front. I'm in the midst of pain management (non-oncological) that started with a referral for trigger point injections that didn't work & has developed into a narcotics prescription. The PS that did my exchange has basically washed her hands of me b/c she's never seen any one have issues like this. The same for a better class PS (more experience w/ reconstruction than my local PS, but still small-town, Louisville, KY). The option these 2 PSs have given me are 1) live with it, 2) operate & put in smaller implants -- might or might not work they can't predict, 3) operate & NOT put implants in at all -- might or might not work they can't predict. I chose option 4) GO somewhere where they do reconstructions on a daily basis!
I have to say that at this point I don't have a whole lot of hope which completely depresses me. I was on a couple different anti-depressants to deal w/ my mondo hot-flashes (hello surgical menopause), but they didn't seem to help me at all (I was on each of them for well over the minimum time required to notice a difference).
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Biologybrain - I am sooooo sorry!
Your story makes my heart hurt. I have no answers, only observations and what has helped me.First, the driving. I did too much after my exchange and paid for it with pain .... I moved three weeks out and did a lot of reaching. About six weeks out, I drove 120 miles (total trip 240 miles) every week for the Fall semester to attend a class. The driving totally exacerbated the pain and the LE in my fingers. While driving, your arms are outstretched and driving 70 miles could be an issue. Recently, I drove up north, a 7 hr one way trip to see some friends. And when I got there, I was really hurting! Haven't hurt that bad in months. Driving home, I tried something different ... I had the seat very close to the steering wheel, so my knees were right up there with it, and I rested my arms on the steering wheel, so they were not outstretched and when I got home, I didn't hurt. My knees, a little, but not my arms!
So ... I know it's a minor thing in all of your issues, but could you change the position in your arms while you drive? Also ... I found yoga to be a huge part of my pain getting better. Just simple stretches. I attend yoga/thai chi/pilates class at my gym and while I couldn't and still can't do everything, it has and does help me a great deal.
I also found a video that is great for LE, but it's also good for regaining mobility after breast cancer surgery. It's called, "The Lebed Method, Focus on Healing Through Therapeutic Exercise and Movement." Sherry Lebed Davis is the lady who leads it & she is a BC survivor who developed LE after flying. Her brother, who is a MD, helped develop the exercise and it's been huge for me ... singularly the best thing I do for the lymphedema and it's also great in keeping flexibility in my arms and my pain level down. I bought it on Amazon.com
Also ... have you tried a PT or an OT? One or your doctors can order an OT or PT for rehab and your insurance should cover it. I had LE OT who performed myofascial release on me and while it hurt soooo bad when she did it and about an hour after, it was miraculous what happened to my flexibility pain after she performed that massage. It sounds the massage you had was way too hard.
These are simple things that have helped me. I pray you can find something that will help and someone who will listen and guide you in what you need to do and where you need to go.
[[[[[[[hugs]]]]]]]
[edited to try & correct the weird format change, can't fix it, don't know why it happened.]
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Man oh man. I have been away from this board for a few weeks, and it is so alarming to hear of so many women's pain stories. SIGH..... I had posted in May or so that my 5-weeek post-op pain was horrible, and then a few weeks later that it had miraculously gone away. But now that it has been a few months, I am left with shoulder pain that is constant and enervating. I have gone to a great PT, and I do a lot of back stroke, but honestly I often can't sleep from the shoulder pain. I already had an impingement problem prior to surgery -- probably from sitting at a desk so much and also holding babies in my arms -- which is a lot worse now, and in two days I do the exchange surgery to get rid of the TE's and get 300cc implants. I am so afraid of losing whatever ground I may have made up since surgery #1... back to square one, or worse. I am so sorry to hear of everyone's difficulties and wish future genrations of women who contract breast cancer will have an easier row to hoe.
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Dawne-Hope: Thank you for the yoga reminder! I will try after I have recovered from the exchange surgery!!
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K8sonny, you may find all of it better after the exchange surgery as the implants are a lot more comfortable.
Biologybrain, I wish there was some way you could take a little time off work, as in leave of absense. No way you should be driving so much. I feel so sorry for you I could cry. I guess it's because driving even a little bit causes me a lot of discomfort--can't imagine driving every day to work and back like you do. Is there any way you can baby yourself a little? You certainly deserve it. You are so young--take care of yourself. I led that same kind of life--raising 3 kids, principal bread winner and a very high stress job in medicine. I wish I'd slowed down a bit and been a little more easy going. End of sermon!!!
Tina, thanks for the lymphedema leads. I am looking for a good masseuse for that. The yoga has helped. Mostly, I just have to change my lifestyle to include an exercise break at around noon each day. I'm a retired nurse but had a fledgling business going making purses and selling them. (Here in Portland there is a very active fiber arts scene). I miss just being able to go all day without stopping, but my new normal seems to be pain control and wellness and that has to come first. I also have hip pain which isn't making any of this better!
Thanks to all for listening to all the complaints! I'm a world champion whiner but sometimes that helps!!
Lynda
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The yoga is a big help. Also check into having pain cream maid at a compounding Rx. It helps so much
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I think it has helped with PM pain
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Birdlady,
I would take the advice of your OT and wait until you are cleared for yoga. I'm over a year out and just now starting it. The PS felt there was just too much risk of injury before that. He did let me do range of motion, but very carefully. Everyone is different and I guess it just takes a while to find something that works.
Lynda
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Sherry Lebed has an exercise DVD especially designed for post-mastectomy. Very gentle stretches, full body, and fun music. It's helped so many women here -- you might want to look into it.
http://www.gohealthysteps.com/store/?productID=3
Be well,
Binney0 -
Thanks Binney--I'll try anything exp. stretches. That does give some relief.
Lynda
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Just had the exchange surgery. Fortunately, I was in the recovery room (not still in surgery) when the power went out here in San Diego. The hospital closed everything that wasn't urgent, including the pharmacy. My DH was able to persuade them to reopen and fill my prescription for pain meds. HELLO!
I have to say that all of you were right; the pain after exchange surgery is far less than after the BMX. But very stiff thru shoulders still.
I had posted earlier that lots of backstroke was helping my shoulders. I haven't been swimming in 2 weeks, and my shoulders actually feel better. Now I wonder if I was overdoing it. I checked out a few websites (google:"shoulder impingement") and they all say to avoid raising the affected arm higher than shoulder height. It feels like a quandary though: the injury remains if I don't exercise it, and if I exercise it, it hurts! Boo!
Now I am thinking to take your advice again and try massage. After I recover, anyway!
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Hi All! Please feel free to join my Facebook support group called Post Breast Therapy Pain Syndrome: http://www.facebook.com/groups/265320350156856/ Thank you: )0
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Birdlady54, I Have cording and its awful! i have had 3 treatments and not a change! Looks like this sight has not been used lately,but then again when in pain and feeling n miserable what more can u say??? i will pm u since look like u may not come here too much anymore, lucky you
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Birdlady and Beacher, there's information on cording (Axillary Web Syndrome) here:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htmThe page offers access to a video about a cording massage technique, for therapists only (no do-it-yourself!), so your therapist can contact the site for the link to the videos if you'd like.
Hope you both get good help with this soon!
Binney0 -
thanks Binney,i have been on that site in the past and it does have alot of info. Yesterday i went to a 2nd pt who's specialty is lymphadema (which i do not have,i knew that) But she say's i do not have cording hmmm sure feels like a rope or iron bar is in my axillary anyways she is covered by my insurance only pay copay15.00 she said she would lightly massage for a few week 2x a week ,although its not cording....whatever i will try anything ....have a pain free day
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It seems like PMPS is not such a rare occurrence. But I never heard any of my doctors mention it. The PT I am seeing now says a recent study shows something like 50% of women still have pain and issues 6 YEARS after mastectomies.
Now, I am the kind of person, if I had been told this beforehand, would have still gone through with BMX. I wanted them gone. But no one, NO ONE ever told me that this pain could be chronic.
I have been in pain every single one of my days since my surgery 27 months ago, unless I take opiates or narcotics. And every day I worry multiple times that all these pains are the cancer recurring. A little honesty up front would have gone a long way. I hope that there are BS or plastic surgeons somewhere out there reading this.
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I had a BMX 1/11/11. The surgeon was VERY flippant about possibly nicking a nerve when she did the sentinel node/axillary node dissection, but seemed like it was nothing really to worry about. I complained about the PMPS from the very moment I woke up. In fact, it wasn't until I fired the whole clinic I'd been seeing, and went to the competitor that I was referred to a pain clinic for severe PMPS. I too am on 2100 mg gabapention, amitriptylene for pain and sleep, tramadol and they added another pain pill to work with gabapentin. I've just completed 6 months of pt for pain and scar tissue adhesions. I have had weekly nerve block shot to the neck, trigger point injections, and now am getting monthly lidocaine iv infusions. I also see a pain psychologist who is incredible as well. My pain team is wonderful. I am a little bit nervous about not having the biweekly pt sessions.
I had to really dig for information about PMPS. My surgeon's inability to either understand how bad my pain was or deal with it effectively is disturbing.
My pain was not taken seriously until I sawthe team of dr.s at the pain clinic at a local hospital.
I am still not convinced I do not have a mild case of LE as well, since the pain has been masking or interferring with the diagnoses. Unfortuneately, there are no certified lymphedemilogists in my area.
One of my pain dr.s says 25-50% of women get PMPS but he rarely sees women as bad as me, so I can totally relate to you minxie.
The mix of drugs plus pt has done wonders, but it always comes back, but just not as severe!
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mycinnamon and minxie - Reading your posts makes me realize I'm not crazy!! I too have had chronic pain since my BMX Oct/2009. I have tried every road to try and feel better, mostly by being my own advocate. I just saw my PS last week and he, as always, informs me that I'm the only one of his patients that has had issues! I am in the one percentile! I would love for him to read some of these posts. I had my implants removed in July because I just couldn't take the discomfort anymore and I now have the pain even worse!! It honestly feels like the implants are still there and I have an iron bra on - extremely tight feeling all the time. I've gone through PT, including LE therapy, and now next week, I am going to a pain clinic. I just can't believe how minimized the pain issue has been from the beginning and if it wasn't for my primary care doc, I'd be in an institution! My PS is so negative about anything any other dr mentions. He said he doesn't know what a pain clinic can do for me. My biggest challenge right now is staying positive and it certainly doesn't help when surgeons are telling you there is nothing more that can be done!
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Your surgeon makes me sooo mad. He is only the plastic surgeon, perhaps you would get more from seeing the surgeon who did the mastectomy, since that surgery is what more than likely caused the PMPS. I wish you all could go to the pt therapists and pain clinic I go to. SInce you had your implants removed, is it still necessary to see the PS? Perhaps you could print out information on PMPS and hand it to your ps, as well as some of our stories. Your ps is an idiot, in my opinion. Just because he doesn't see it in his patients, and claims you are the only one with these issues doesn't mean it isn't a real problem. Each patient needs to be treated with respect and care on an individual basis! I would tell your ps to learn about PMPS and fire him! I am glad your primary doc is on top of things for you. There are pain treatments available. My pain dr's told me that sometimes it is trial and error to find what works for each person. I can't wait to hear about your trip to the pain clinic!
P.S. You may want to try another pt to work on you. The first one I saw really didn't know what she was doing. The other two I saw, had different techniques, so it was nice to see both.
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I actually see my BS on Nov 2nd. The only reason that I saw my PS last week was a follow up from the deconstruction since I was having issues - not that he could or cared to help me or direct me to someone who could. I do not see him anymore!
I am really hoping and praying that the pain clinic can help me. Have the nerve blocks helped you? I really need to get some type of relief! Noone can tell me this is how we are supposed to feel. The only thing that takes the edge off the discomfort is percocet and I don't want to be taking narcotics the rest of my life to feel better!!
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