Post Mastectomy Pain Syndrome (PMPS)
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Maggi-I have pt twice a week now for about a month and it does seem to be helping. She does do the two hands opposite direction, but doesn't do much of the 60-90 second hold. I am even better if I do the stretches 2 to 3 times a day, once a day at minimum. If I miss a day it feels like I am back at the starting point. We are working on strengthening my shoulders and back muscles, as they are over stretched from being hunched over and pulled forward. Appointment is 1 hour and she uses the full hour for the massage, my last pt did maybe 10 minutes of massage and the rest of the time had me do stretches that I could do at home, plus the total time was only 30 minutes. My current pt has her own place and she really works hard and seems to really care. I am seeing much more improvement with her.
Cinn-that is exactly what I do, when I feel good i over do it and then crash. I think I am lucky in a way because I feel more tightness than pain, but even that makes me tire very easily.
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Oh, ladies, how I wish u could come to Oklahoma and see my therapist for a few weeks. She did wonders for me. I couldn't stand stand for air to blow on my skin when she started. She did almost a full hour of massage each visit.....also working on lymphedema at the same time. So it was a double problem. I started out 3 visits week, then 2 etc. I wish I could go forever....but of course insurance rules our lives. I am sorry for what everyone s going through. I have only tolerable pain now. Love ad support. Brenda
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Can anyone relate?
I am just struggling so much with my pain. When I wake up in the morning, the tightness and burning is there, but really bearable. I get up and go about my business. by 2 or 3 it is almost unbearable, and it gets worse as the day goes on. In the morning I think, "well maybe this isn't so bad..perhaps it is in my head, like the surgeons told me". I think the interventions I've been using have just stopped working. Last night I almost went to the ER, then my husband reminded me that when i went the last time (many years ago), they just gave me more pain meds and kind of treated me like a drug addict. Ok, so here is what I use to address my pain, both chemically and otherwise:
Exercise - stretches, yoga, swimming
I wear a tank top that has some lycra in it. I tried compression bras and it was really uncomfortable.
Creams and ointments twice daily
ice
Physical therapy - myofacial release, etc. I'm just starting this.
meds - neurontin, celebrex, tramadol, vicodin, percocet (it seems as if these meds have just stopped working. When I take them, the effect lasts only about 2 hours.
I wanted to know if anyone experiences the pain the way I do and also what other non-narcotic medications you take that might work. I took lyrica before and it made me way too drowsy. What else do you suggest? Please help, I am desperate. Also, what other non-medication interventions work for you? It seems like mine just aren't working lately. I'm so frustrated. Thanks for you support. I wish I had some of you here in Pgh. Maggi
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I know we communicate quite frequently about this, and I sent you a pm today.
I wonder what would happen to your pain if you cut back on the exercise. When I was doing OT back in 2011 for Myofascial Release on my chest and armpit scar tissue adhesions, they mistakenly had me do regular strength training like they would for other types of injuries.
It certainly didn't help the nerve damage pain one bit, in fact, it made it considerable worse. I went back and discussed this with the pain doctor at the time. His logic was simple. He asked if my strength was good enough to do what I needed and I replied with a yes. Then he said it would be silly to continue with what in OT caused me pain and he contacted the therapist directly. I found it better coming from him, than me, in case they thought I was just being a wimpy, whiney, patient.
I am on 2100 mg of gabapentin a day (plus other meds). I realize you work (and probably have to drive), but I think you are on a much lower dosage of Neurontin/Gabpentin than I am. Can you see if you can talk to your pain doctor about bumping it up a little at a time?
I still think you should talk to your pain doctor about a Lidocain IV Infusion for pain. It works for me really well. I get it done on Friday mornings (every 2.5 months), I was more loopy when I got home in the beginning and would sleep almost all day then on Friday, and it takes me till Monday for the fog and tiredness to go away.
Compression or just tight items of clothing on my chest just don't work for me. My tops need to be soft and loose. However, when I feel my LE acting up on the chest/sides of chest, I wear a modified sports bra from a mastectomy boutique. They are as tight as LE garments, and not as tight as a compression bra for sports, but just enough to help me out without causing discomfort.
Sometimes when I get LE flare ups in the upper arms, I don't know what to do if my nerve damage pain is really bad. Wearing the sleeve causes more pain, but the LE is flaring. Luckily my LE is very mild.
bak94: I know it is hard, but we have to get out of that overdo it then crash. I have had my pain since the moment I woke from surgery on 1/11/11, so I have had lots of time to learn what activites to do and when, how much, and rest between activities. The pain pyschologist told me it was very important to learn.
The pain psychologist also told me to acknowledge the pain, kind of talk to it in my mind..yes I know you are there, but there is nothing really wrong (the nerve damaged nerves are communicating everything as pain to the brain even when there isn't an injury).
I, too, learned that I was hunched over because of pain and scar tissue pulling. I was so surprised to learn scar tissue on the chest can do that. That is very difficult for my since I have slouched since I can remember. So that is over 40 yrs of slouching. Then add the scar tissue and it was terrible! One of my OT's (I had two...with two different approaches with I found excellent), was into yoga and helped me learn how not to slouch. When I was first learning, I had my shoulders too high trying to get better posture. Then I learned to relax the shoulders (let my inner thing in my chest shine) try and put my back chicken wings together, but relax while i do it. It is still a conscious effort for me.
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Again, thanks cinnamonsmiles for all of the input!! Where is everyone else. I guess if they aren't responding, they must be all better. If that's the case, I sure would like to know how they got there. I'll pursue talking to my dr. about the lidocaine, but honestly, unless you get a marked difference, I really don't want to be comatose for days. I'm 59 and have been dealing with this crap for 5 long years. I'll talk about the neurontin with my dr. Thanks
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Maggie, I have had many chronic pain issues over my life, and taught an advanced pain management course for upper level pharmacy students. There are several things you might want to consider.
Sometimes you can build up a tolerance to the narcotics and actually become even more sensitive to pain. I don't really understand the mechanism except that it may be a central nervous system process. So discontinuing them for a while may allow you to go back to them with better relief.
When acute pain is not adequately treated, it can become chronic. In acute pain, the body responds to something that is causing an injury, so you do something to protect yourself. In chronic pain, there is no longer an injury, but the brain perceives other stimuli as painful. Narcotics, nonsteroidal antiinflammatories, antidepressants, antiseizure meds, and others have a role in altering brain chemistry to give some relief due to both local and systemic effects.
Sorry about the delay in posting this - I had typed it last week, but traveled the last few days and forgot to hit the send button! Hope things are improving.0 -
Well, I remember reading this thread back in 2011 when I was in a lot of pain with my chest and under my arms. I thought it was because of my implants being too big.The pain got so bad I had to do something so I asked my PS if I could go smaller and he tells me that I could go bigger but not smaller. That made no sense to me. I had been through a revision which did not help. My pain was getting worse and 24/7. I went for a second opinion with another PS and he said I could go with smaller implants and some fat grafting. I went from 500cc to 300cc on August 1,2012. I felt so much better and I went to Vinnie Myers at NOLA May 15th and had my nipples tattooed. I felt whole again and was getting my life back, then BAM!!! about a month ago I started having some mild discomfort with tightness. Now within the last 2 weeks my pain is getting worse, back to the way it was with my first implants. Tightness, pain in my scar area and the pain and bulk feeling under my arms. I thought I did everything right this time but I guess not.Will this ever end? It will be 1 year August 1st.
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Linda what you're describing regarding pain meds making pain worse is called opioid induced hypergesia. I've only been on meds since June after my last surgery. I'm only taking mild pain meds but know its only a matter of time before ill need more, I know. Thanks for your input.
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Well, here I sit with ice on my chest after coming from PT. I thought myofacial release meant just that...using a hands on approach on my chest to release scar tissue and adhesions. After 4 sessions with this PT who claims that's what she does, I learned a few things. First, she told me that my emotions caused my breast cancer. then she told me that my issue was not the nerve damage and scar tissue, but because I thought my body image was poor and i had not accepted my scars. She told me that in all of her years as a PT, she has never seen anyone with this PMPS this bad. Well, thanks so much. I told her that my insurance does not pay a PT to do psychotherapy. This is the 2nd PT I've found in Pittsburgh that thinks they are "healers" rather than PT's. Doing reiki, etc. She would hold her hands over my chest or over my shoulders and told me this would help. She also said that all facia is connected and that working on my legs would help my chest!!
So now I'm so frustrated and scared that I'll not find a PT in Pgh. who actually does myofacial on my chest. I only have one more person to see next week. After that I guess I'll have to just call PT's in my area and ask each one if they do myofacial release. why does finding the right people to treat us have to be so hard. Right now I am at my wits end..just having another injection that did not work and going to 4 sessions of PT where I got more riduculous healing theories than actual treatment...hey where is evveryone?? I may have to start another thread or something to get this talk on PostMastectomy Pain Syndrome going. We cannot give up ladies. Sometime I feel like it but then realize that we often only have each other. Maggi
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Keep fighting Maggi! I just had my 5th myofascial release massage yesterday and today for the first time since my mx realized I had no pain all day! I was getting ready for my cancer class at the gym and thought "Wow! I haven't thought about my pain all day!" Of course, once I did all my exercising it got a bit sore but all in all I have started to feel pretty good. I know the stretching and strenght training are helping but the massage therapy has been the best. I go once a week and it's been great! And yes, they need to touch you for that!! Sounds like your PT is a real whack job. Kick her down the road and go try another. Life is short enough without listening to the crazies who like to make you feel like it's your fault you got breast cancer! I'm trying to surround myself with only positive helpful people and so far it's working like a charm! So call the next PT on your list. If you don't love that one, try another. You really need someone to help you through this that you really connect with. Healing thoughts headed your way!
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Maggie, I concur with lala1. Get another PT!!!!! Ask the PT if he/she does Reiki, and if the answer is yes, get someone else! I believe Reiki can help some people with pain, but it is NOT a substitute for actual PHYSICAL manipulation of that scar tissue!!!
May not need to start another thread, but may need to keep this one bumped up frequently. When I check out the active threads, this one is usually several pages back, and I often don't go past the first 3 or 4 pages .... of course, I have been here for 3 years and my needs have changed, my experiences have changed, so I am a little more selective in which threads I join, and I try to limit myself here because sometimes it seems that the negative stuff that I feel gets validated here, which is good, but then I find myself spiralling downward instead of upward. Mostly I want to contribute positively where I can, and I am here to support you and any others with PMPS because I KNOW the right providers can help, and the wrong ones can harm. Hugs to you today, gentle of course!0 -
MaggiPgh, I just wanted to drop in and let you know I have been thinking about you.I too am sooooo frustrated. I guess next week I will be trying to find a PT that does the myofacial release. I am having a bad day with the pain. I agree to try to keep this thread going. I know sometimes when I am having a bad day I don't feel like posting, but I drop in and read some of the same post just to remind me I am not the only one with this horrible pain so maybe we can just pop in and post "bad day" or "good day" or do the bump thing. I hope that does not sound a little crazy. Ya'll have any other ideas?
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Thanks for the responses. I have appt. with new PT on Thursday! Then having some test injections intercostally. Hoping everything works but I know it's day to day. Some days are good and some suck I have a 20 year old daughter who has been in India for 2 months. She left just right after my 2nd surgery. I'm back to being in pain most days just like before in 2008-2011 I had one good year and then, bam! I had a car accident which caused injury to my chest. I've never recovered and now my poor daughter has to go through this again. How our PMPS effects the family. Could use some support in this area. Maggi
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Hi ladies. I was just stopping by for some answers. I am having some sharp burning pain in my radiated breast. I just had my exchange surgery at the end od May. It just started getting bad again the last 2 weeks. I had pain like this after my bmx and I assumed it was my tissue expanders. They about killed me. I Had a catscan a few days ago and it showed a fractured rib. I know the pain Im feeling isnt from that. If I move the wrong way I have a sharp shooting pain across my rt breast. I just went back to work full time a few weeks ago and its killing me. I have ice on it which helps. I dont have problems with my shoulder nor do I feel a tight feeling aroung my chest. It just burning shooting pains. What is the best doctor to go to for this? Thanks for any help that you can give me.
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melmcbee, you may want to see an interventional pain specialist as they can do some nerve blocks, etc that can be very helpful. At the minimum, you should see a pain specialist and/or palliative care specialist. Some pain specialists just push meds, but I have had good luck with topical treatment for CIPN and also injection for neuropathic pain in my arm from ALND. Good luck!
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Maggi, How are you doing and how did your PT go Thursday?
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What is CIPN? Thanks
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CIPN = chemotherapy-induced peripheral neuropathy
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Thanks for checking in with me. My new PT is good. She did this thing called "skin rolling" which she said it what u do before the myofacial release. I was a little sore after but felt better for days after. I'm not going to get too excited about it yet. We shall see what happens but I'm encouraged for once in a long time. I know I can't give up.
I also spoke, yes, spoke to a woman fr the Facebook page. That was the best help of all!!!!! If u want to talk private message me. It's the best feeling.0 -
What's an ANLD? What kind of injection did u get and who did it? Can u give me the name of Dr?
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Stick with the massage, MaggiePgh!! I've been doing it once a week now for about 6 weeks and I feel great! Combined with exercise and strength training, I feel almost 100% but feel even better about myself than before mx!
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Alnd... Axillary lymph node dissection
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Linda: You mentioned you're using a topical treatment for CIPN that works for you. Do you mind sharing the name of the cream/ointment/etc? Have you had luck with any other neuropathy treatments?
What is the injection for ALND? Thanks.
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MinusTwo, the injection for ALND pain was a steroid, like they use for joints; they located the nerve that looked like it had a neuroma (area where the cut nerve was trying to heal or regenerate - it becomes hypersensitive) with ultrasound and injected it. I had it done several times, good relief, the last one has given me good relief for several months. I am currently having trouble with it because of LE and all the bandages and sleeves hit right at that spot and trigger it, but overall it is MUCH better than it was a year ago!
The CIPN cream was compounded by the pharmacy based on a formula that was used in a research study by Debra Barton. I asked for a referral to a medical toxicologist from my MO, and the toxicologist followed up with the researchers to get the exact components and amounts, then worked with the compounding pharmacy to get it for me. Insurance approved it for a year, and I used it for about a year. Now I mostly have chronic tingling in fingertips, worse with tapping on keyboard, etc, occasionally painful but not enough to deal with that cream. But the cream DID help get me through some of the worst of it. It had baclofen, amitryptiline, ketamine in some cram base that was absorbed. You can see some of the research that Dr. Barton was involved in:
http://link.springer.com/article/10.1007/s00520-010-0911-0
http://www.nature.com/clpt/journal/v90/n3/abs/clpt2011115a.html
You can do a search for D Barton, chemoptherapy induced peripheral neuropathy treatment and get quite a few articles. Look for the scholarly papers, not the regular Google search.
Best wishes to you.0 -
This is a great thread that relates to so many of us! I am 2 years out of a BMX, I have the pins and needles on effected side but I also have like an over stretched feeling in the non effected side and in arm pit? Is this s normal feeling?
What is pmps?0 -
Linda - thanks for the info & the links.
B123 - PMPS = Post mastectomy Pain Syndrome.
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I haven't posted in a few days and promised myself I would on a regular basis. I also use a compounded cream with the ingredients just mentioned plus a few more. I learned from Facebook to take my time rubbing it in but even w that, who am I kidding.. It helps for about 30 min !! My iron bra is upon me this Sat. evening at the usual 5 pm time. I've also had injection with no listing effects so ill have to check out ur dr's info. Did he used a fluoroscope to guide injections or did I understand that he used ultrasound?
I had PT last week for second time and still not sure if it helped. I know I have to keep it up but she doesn't take my I insurance. This is the 4 th PT and she's really nice and thorough so I'm sticking with. Also I'm in the beginning phases of starting a support group for women w PMPS At Gilda's Club. Where am I goi g to find the women in Pgh with PMPS? Any ideas? I know that most of us hide and don't even know what we have so it will take a while to spread the word. Hey how about a Billboard??? I know the Internet will b the best place but let me know what u think cause I need your help. If we build it hey will come. MaggiPgh0 -
When I first got PMPS, I thought the world ended for me. It took two years to get to a decent pain level (very mild) and then got breast cancer in the other breast, so opted for SNB with the hopes of not getting PMPS. (plus two mastectomies) I didn't get it. However, what happened is the second b.c. enabled me to use my arm and for some reason, made me use the other arm as well, improving it. Yesterday, I sawed down a number of aspen trees, hauled them over to a wood pile and "flung" them on......something I thought I'd never be able to do!!!! Yes, I get a little achy (I'm 63) but who wouldn't after this. I am here just to say, keep hoping and keep exercising....nerves can and do heal themselves!
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Hi blue pearl, I don't think I've seen u post before. I'm not sure what SNB is? I'm new to this posti g stuff on chat rooms and don't understand a lot of the abbreviations. It is so nice to hear about your recovery. In fact, I got to that place of a le to do manual labor without much pain but then had a car accident ruptured my one implant, removed both of them through surgery and now back to square one. I know it will b 2 yrs. before I'm a le to do stuff like you described. It's very disheartening to have that d familiar burning and pressure tightness in my chest again. So it's helpful to read your words of encouragement. Sure would like to hear from some others too.
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Did anyone reply to you? Google Postmastectomh Pain Syndrome and you will see a lot of clinical articles from reliable medical journals like the Journal of American Medicine. There was a good article (life changing for me) that explains the symptoms and cause. Too bad I can't find any info on treatment. Hope that helps.
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