Post Mastectomy Pain Syndrome (PMPS)
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Have your sister check out the post breast therapy pain syndrome Facebook page. She'll have to join its a closed group. My name is Maggi and I have had PMPS for 5 years. Too much info to write. Call me or email me: 412 559-0390 maggigioffre@comcast.net0 -
Have your sister check out the post breast therapy pain syndrome Facebook page. She'll have to join its a closed group. My name is Maggi and I have had PMPS for 5 years. Too much info to write. Call me or email me: 412 559-0390 maggigioffre@comcast.net0 -
Thanks Bren - I have called them and have an appointment with my doctor next week to get a script for the cream. I highly recommend the Facebook group for PMPS - I recently joined and everyone has really been helpful - plus there is a lot of information posted there.
Connie0 -
Ladies, how long after treatment is it considered PMPS? I'm still having a significant amount of pain at the crease of my underarm, and where the incision ends under both arms are very tender. Pain comes and goes, but I'd describe it as pinching, burning, aching, shooting, depending on the day/time of day It builds during the day, even with minimal activity.0 -
Hey Gowith. As always its good to see you. There is a facebook group called post mastectomy pain and its more active. Since its Friday I didnt know if th more experienced ladies would see your post. Im trying to recount th months but I think my pain became the worse rifht before my exchange surgery which would have been a month after rads. I finally had 3 intercostal nerve blocks done a few weeks back. I also take neurontin which helps me. I dont know at what point they label us with pmps. Most doctors seem to blow it off like we are crazy. I get the impression they think we should be thankful we are alive. Lol. The pain you are describing with th stabbing and burning is finally relaxed. Believe it or not someone here told me to rub or massage it and it really did help quiet th nerves down. I also used ice and lots of pain pills but I havent used any since I started seeing the pain mgmt dr. He gav me th jnjections and lidoderm patches and tramadol. I really havent had to use anything this week. Good luck and praying you find peace and no pain.0 -
Hi ladies I had my double mastectomy and axiliary node dissection in July and still feel some pain at the end of the day and discomfort throughout the day. This is what has helped me. Firstly finding a physiotherapist who specializes in working with this procedure has been invaluable and I believe the reason my arm healed quickly and alleviates my pain. I am a dancer so needed to be able to return to full motion fairly quickly, which I have through yoga mostly. My arm generally feels better after yoga and stretching exercises I have received along with a weekly physio session, which ultimately will drop down to when needed. I hope some of this information helps and wish you all the best as this is such a big operation, and adjustment for our bodies. K0 -
hi gowiththe flow,
Yes unfortunately you have PMPS. It's caused by the breast surgery and that's why the dr. Acts like your crazy. They damaged key nerves during surgery. Also scar tissue entraps the nerves. I've had it for 5 yrs and got much better then had more breast surgery and it came back. I was 54 at first BMX. Perhaps if u r younger you recover better. I don't know but if u truly have PMPS it would not subside in a few months from my experience with the other women on Facebook page. Hope this helps. Please don't get discouraged we are all different but the same.0 -
hi gowiththeflow, I too have this pain, I'm on neuron tin and recently am also using salon pas patches, and I got a vibrating neck pillow. I alternate all of that with taking 300 mg neuron tin every two hours. I have a great general practice doc who is very helpful, I am figuring out the dosage and keeping in touch with the doc. I didn't have this PMPS after my partial mast in 2005, it started about two months after my BMX this past January on the side where I had had the partial mast followed by radiation.0 -
Hello Ladies,
I may be coming to you more often in the near future - OK - I will be coming here. I have had pain issues since my BMX on 8/7/13 and nobody could really give me answers to what was causing the pain.
First, the day of surgery I had an electrical type pain shooting from SNB site down the inner left arm to the elbow area. Now, 9 weeks post op the pain has worsened, goes all the way down into the wrist, is so bad it hurts to run a washcloth over it, hurts to put moisturizer lotion on it, hurts to just extend the arm and really hurts getting a sleeve pulled up that arm.
Today is Sunday - this past Wed I had another node removed on right side. Wouldn't it figure - 1 day following surgery that electrical type pain started shooting down that inner arm to the elbow. Today it is now extending about 2 inches beyond the elbow. I'm pretty sure it will end up going down into the wrist and I'll end up w/same pains in that arm that I've been suffering with in the left arm.
I contacted my PCP on Thurs when I first felt the pain in my right arm. She did a little research and emailed me that she believed I was suffering from Post Mastectomy Pain Syndrome. Gave me several options - I've opted to try Lyrica as I've tried this med in the past for chronic headaches (don't like it or any other anti-convulsant - but the pain in the left arm is just getting worse and worse and if it's now starting in the right....I want to do what I can to stop it as soon as possible).
You gals seem to be very well informed so I thought I'd turn to you for your thoughts. Did any of you have symptoms like that? Did any of you get relief w/Lyrica and if so, what dosage did you have to go up to before you got relief? What other options have any of you been offered and more importantly, what has WORKED for you?
Your help would be greatly appreciated. I swear, I thought after BMX I'd just heal and move on. I read the first page of this thread and it seems that's pretty much what we all figured.....I don't get the lack of info we receive prior to surgery? It made me very angry to sit here hurting w/no known reason as to why and nobody was helping me when I was telling them my symptoms - well, I'm sure you all probably have similar stories.....
I'll be watching for replies - I really want to know what others are dealing w/after their doctors tell them they suffer from this syndrome.
Have a great night ladies!0 -
I suffered with post mastectomy pain syndrome for well over two years. Mine was from a damaged nerve after sentinel lymph node biopsy/BMX. The nerve pain got much worse six months after BMX when my nerves started to regenerate, and that took a while. Some of my muscles atrophied, others got very dysfunctional, and I was extremely weak. Unlike many of you I did not benefit from pharmaceuticals or physical therapy, so I had to get creative.
I was so overwhelmed during those years that I did not reach out to anyone--not even wonderful people such as you caring ladies--I think I was very depressed when I could not find solutions from my medical team. The silver lining is that I wrote a book about my experience. I truly believe post breast therapy syndrome needs increased awareness and more research. I have sent the book to physicians interested in this topic, hoping to encourage further research. I advice any one who is feeling isolated to journal, which might have saved my sanity, and to reach out to groups such as this one, even when you think no one can help or is going through the same thing.
I might not have benefitted from your wonderful input when i needed it, but perhaps some of you can now benefit from what I learned to help me cope. With the intent of helping my sisters who are in pain, and in honor of breast cancer awareness month, the ebook version of my book will be available for FREE from October 26th until the 30th @ http://amzn.com/B00CUQRCVC If any of the things I learned and documented helps any of you, then it was worth the writing pain.0 -
jg10,
Thanks for the information. I also have been made to feel, by some doctors, that "it is nothing" - very frustrating. However, I'm very lucky that my PCP did some research regarding the symptoms I'm having and diagnosed me w/PMPS. Started Lyrica over a week ago and have built it up to a dosage that is giving me quite a bit of relief. I'm so sorry you had no relief from pharmaceuticals or physical therapy. That is difficult!
I will watch for your book availability - I'm interested in your proactive approach to helping yourself and others.
Wishing you a happy and peaceful Sunday!
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jg10, thank you for sharing now, and thank you for your generous offer. I, too, have often journalled when things got verry bad, an am considering writing a book, or at least giving a copy of the journal to my docs someday, i got no relief from meds, just SEs. I do find myofascial release helpful, but expensive as once PT says there is improvement and you have been educated on "self care" they discharge you and it is really tough to do the MFR as well as they can, so the scar tissues tighten back over the nerves and the pain worsens.
BTW, I got relief from pain in the back of my arm from an interventional pain specialist who lovated the damaged nerve with ultrasound and then injected it. I had to do it several times, each giving me longer lasting results. I have not asked about whether she could do anything for the searing pain across my chest where tha mastectomy scar runs.0 -
Thanks for your kind words!!
Let me me start by saying that based on my experience pain is caused by different factors. That is why it is so difficult to research it, and why suggesting just one thing is bound to have a limited effect.
Lily1964, the one good thing about not responding to pharmaceuticals or traditional physical therapy is that through perseverance I learned a lot. At least it was a good example for our kids! I am glad you are obtaining relief. Remember that nerves can heal over time.
Linda-n3 I too obtained temporary relief from myofascial release massages although, I agree, they are expensive. Besides, other things can be attempted. Are you massaging your scars to loosen your scar tissue? You might need to be aggressive (I used my knuckles) and consistent. Soap in the shower or massaging over a silky fabric eases the process. In the book I explore and referenced seldom-discussed, complex-endocrine imbalances and rehabilitative considerations, which might be playing a role in your situation. Write if you feel inclined to do so. I recently read that our brains work differently and more creatively when we write and as you already know, we need to be creative to help ease our complications. Though I cannot explain exactly how, writing helped me heal.
I did give a copy of my book to all of my doctors, even the ones who did not recognize my pain syndrome or knew how to treat it. If they read it they might be more sympathetic with the next person who is in pain. Can you imagine what would happen if we all did this? However, I also tried to understand their barriers and trust me, there are many. Our health care system discourages medical dialogue (with specializations), which makes it hard to figure out complex medical scenarios. Lower insurance payments, high insurance malpractice fees, and physician shortages create constant time crunches. frequent lawsuits make them afraid to try new ideas, even when they want to explore. We have to work together to increase awareness and research.
Pain and complication management might not progress until all of us are open to new ideas, including a better understanding of why some of us are more prone to pain syndromes. As a nurse I know that treatment is prescribed according to what helps most people, but since some of us do not respond as the majority does, our unique physiologies might be playing a role. I recently started a Facebook page that will (among other things) properly link atypical complication information as it evolves. The information should be shared in different mediums because medical guidelines and preconceived notions take a long time to change, but those of us who are in need of new ideas need them as soon as possible. Anyone interested can follow 'Off Trail by Jenny Glikin' on Facebook.
None of you should loose hope--I truly believe our bodies want to, and can heal, even years later, but as you already know it is important to explore new options, be patient, research, have faith, and let your body guide you.0 -
I'm NED for 3 years and I still have pain in different areas and different degrees. Bone pain all the time makes me feel I'm still under chemo SE's. Pain also in the armpits all the time where nodes removed, and pain all the time in reconstructed tram breast against chest wall, pain in hip and lower back. So I've made up my mind my body will continue to have post cancer treatment pain. So I wake up in the morning take and excedrin with my cup of coffee which gets me moving for the day.0 -
I have an awesome BFF who is closer than a sister to me, her name is Betsy and last weekend she forced me to give voice to all the swirling dark thoughts and fears I've had since January. It was difficult and emotional for both of us. Since then, my pain has been instantly better. I've changed nothing about my routine. One thing I had planned echoes what another pain warrior shared in this forum, that if I still have pain in six months from the start of taking Neurontin (that means end of November), I will adopt the attitude that this pain is just part of my healthy self, not a post surgery pain, and stop waiting for it to go away and just take a pill and move on with life. Then Betsy and I had our heart to heart talk. I boo hooed, took a nap, then woke up with much less pain. Am I crazy? Am I imagining this? Is it wishful thinking?0 -
Wirdgirl, there is a very powerful connection between the mind and body. What you experienced is NOT UNCOMMON! If your emotional health is better, so is your body. I used to teach an advanced pain management class for pharmacy students, and have worked with an integrative health service for several years, and have a pretty good understanding of the connection between all the neurotransmitters that are found in the brain and throughout the body, and it is the balance amongst them that impact your mood and all those nerves that serve the rest of your body. There are pain pathways that are modulated by those neurotransmitters. And sometimes the brain gets sensitized and interprets incoming signals from the body as pain when there is actually no pain stimulus occurring. It is complicated, and I'm not sure I am explaining it well here, but I just wanted to assure you that you are NOT CRAZY and not imagining this. The pain will likely return when you are tired or mood is low. Meds can help, but also exercise, good relationships like you have with your BFF, etc. can help the pain. Best wishes for continued improvement.0 -
I'm SURPRISED, but the Lidocaine patches HAVE HELPED ME somewhat!! Mostly with the bra/seatbelt pressure. ..:)
Violet
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Blondishana. Endocrine imbalances contributed to my muscular pain and muscular weakness, have you considered other medical causes for your pain? I say that because of your hip and lower back pain might not be directly related to cancer treatment. Anti-estrogen therapy can cause muscular and joint pain, but so can other issues. You might want to consider an "integrative" doctor; they tend to check various hormone levels, some which can cause generalized pain if they are out of balance, although clearly you should never take female hormones. Integrative doctors are growing in number, in part because they entertain how lifestyle habits, nutrition, emotional, and social issues play a role in our sense of well being. Here is a better explanation of integrative doctors http://www.webmd.com/a-to-z-guides/features/alternative-medicine-integrative-medicine Try to at least look for pain reprieves, you sound like you are loosing hope.
Wirdgirl, I too had a powerful emotional-release experience that lessened some of my pain. I'm a believer!0 -
jg10, thanks for the link. i go to an integrative health center and find it very helpful, but wish there was an integrative oncologist available. i think there is one at UCLA or USC.0 -
I am 57 years old, diabetic type 2 and had a masectomy of my right breast and 15 lymph nodes removed, 12 of them were cancerous.(October 16 2013) I was prescribed pain medicine but have such a fear of drugs that I can't bring myself to take them considering what I will be going through when the chemo starts. It is so hard to get comfortable, the pain is awful even on my back just below my shoulder blade. my armpit feels like it's on fire and the tightness is awful. I have been trying really hard to keep my right arm mobile but it doesn't stop the pain. Is there anything I should be doing that might help? I have gotten no instructions from the surgeon other than reach over my head to touch my left ear. I thought I saw someone mention massage.. does that help? What kind of lotion should I use? what kind of excercises? I am on disability and have only Medicare so I do not have money for special therapies. I am not even sure how I am going to pay for the chemo and radiation yet. I live alone so there is noone living with me to help me out. My nieghbors are kind, but they are men and although they help me a lot with chores and such, I can not ask them to help me with this. Thank you and God bless for any words of encouragement you may have to offer.0 -
Kimbee,
Do you have Lymphedema? Also, you probably need to take those pain meds...;)
Tell your docs your symptoms/Pain issues. Sorry you are having a rough time! Keep us posted. ..:)
V
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Kimbee, welcome to Breastcancer.org. We'd recommend that you take those pain meds too, being in pain can have such an effect on your sleep, energy, movement and everything else that controlling it can be a great help. The main BCO site has more information on Treatments for Pain that can help - and of course talking with your medical team about what you're going through.
The article Exercise After Surgery on the main site also gives background and some basic suggestions about exercises that are often recommended. Also, the monthly threads for members who are currently having chemotherapy and radiation therapy can be reassuring for your concerns about the chemo and rads ahead.
Best wishes!0 -
Kimbee, your oncologist office should have a social worker that can help you access services available in your community to help you out during treatment. Also, the American Cancer Society has several programs available. The SW should also be able to help find payment assistance if that's an issue.
And take the pain meds, as long as you take them as directed you should be fine, unless you are allergic to them.0 -
Kimbee,
I agree. You should consider medicines for pain relief. Unrelieved pain is very stressful and debilitating and you need your strength for the next phase of treatment. Clearly, lymphedema can be a problem, but muscular imbalances could also be playing a role. I too had (and occasionally still have) pain between my shoulder blades form muscular imbalances. Muscular imbalances can happen when surrounding muscles try to compensate for the functions that cut pectoral muscles are unable to perform as they heal. Your shoulders and shoulder blades can get pulled forward, particularly if you hunch forward in a protective manner, as I did, to lessen mastectomy pain, and that by definition creates a pulling sensation between the shoulder blades. Try to improve your posture by standing as straight as you can. You can also rotate your shoulder as much as possible to loosen the tension. Your instincts are right; massages can lessen resulting back tightness, particularly if trigger point release is used. Chances are the top of your shoulders also have painful trigger points, and the same is probably the case for muscles around your neck, therefore massages (If approved by your oncologist and preferably from an oncology massage therapist) should include those areas as well. Pace your self. If you can try to stop, rest, and ice your back when the pain is getting worse. A physical therapy consult might also be beneficial. There you can learn range of motion exercises, strengthening strategies, and you might get brief massages. I would also suggest meditation and relaxation techniques to lower your stress level and lessen your pain. They helped me a great deal. I hope you find some relief soon.
Wren,
You might be experiencing some type of nerve healing irregularity near the axillary as I did. Nerves can be damaged during mastectomy or lumpectomy, not just from lymph node removal. I found that putting an ice pack in a sock (to make sure you don't get an ice burn) and dabbing the area lowered the burning sensation. My burning nerve discomfort was worse months after my double mastectomy, perhaps because that's when the nerves were trying to regenerate. You might benefit from medicines for nerve pain.0 -
I have had severe surgical neuropathy since I woke from my BMX with sentinel node removal and one axillary node removed.
I am now on my 4th pain doctor. I loved the first two, but their company stopped doing pain control. The third, I didn't like much but tolerated.
The new one I met today is very interesting. I really like him.
I get Lidocaine IV Infusions about every 3 months (they hook up a bag of lidocaine and it goes straight in). He was asking about my pain, getting to know me better. Last July I had a thoracotomy and that is one painful surgery and add in the fact that they had to cut into already nerve damaged areas....holy moly, pain city.
He asked if it was localized. He suggested that there is a cream or ointment out there that is made out of the hottest peppers you can imagine. I guess it is EXTREMELY painful when first put on, but results for some can be off the charts!! I passed on the cream.
He did bring up doing my Lidocaine Infusions differently. I get a 300 mg bag (at least I think its mg) over a 30 minute drip. It lasts about 2-3 weeks shy of three months.
Next time he is going to try 500 mg bag of Lidocaine over an hour. I may have even more pain relief from that, IF my body can tolerate that much.
This time he ran the 300 bag without the normal saline bag. He said he thinks and learned that if the Lidocaine is infused with the saline bag, it dilutes the lidocaine, and the extra fluid makes me pee out the lidocaine faster. I had a few side effects that I haven't had since I first started, so I am not sure how I will handle the 500, ,but I figure it doesn't hurt to try.
Another thing...when I was home after the lung surgery, they only had my on my regular 5-325 vicodin. My surgeon was out of town, and I literally was in so much pain, I thought we would have to call 911 to get me off the toilet the first morning at home. I called right away Monday morning, and the moronic Medical Assistant said there was nothing more they could give me (which I found was lie when I told the surgeon. she never even alerted the surgeon's physician assistant, and never told the surgeon when he came back). But I notice at the pain clinic, they are always pushing vicodin on me LOL. It is so nice not being treated like a drug addict when I deal with the pain clinic, yet, after having 15% of my lung removed, ohhh noo, I am so sorry but there is nothing we can do for you.0 -
Some doctors are now calling PMPS, "upper quarter dysfunction"....
A syndrome called upper quarter dysfunction — its symptoms include pain, restricted immobility and impaired sensation and strength — has been reported in over half of breast cancer survivors and may be more frequent in those who undergo breast reconstruction, according to a 2012 study in the journal Cancer.
http://well.blogs.nytimes.com/2013/05/20/no-easy-choices-on-breast-reconstruction/?_r=10 -
Whippetmom, thanks for sharing the link, that's an interesting way of describing pain after breast cancer treatment. Does "upper quarter" refer to a section of the torso or the breast? I'm assuming the torso, since they also mention back pain. The pain frequency must be greater with implants because of the stress on the pectoral muscles, which can also affect other muscles in the back and shoulder. Personally, I found that frequent stretches, massages, and strengthening all of those muscles lowered my chest tightness dramatically, but only after two years when my damaged nerves regenerated enough to tolerate the activities. No one seems to talk about rehabilitation through significant nerve damage...0 -
Hi ladies. I just wanted to check in and see how everyone is doing. I started hurting again this past week and decided to come back and look when I posted about my nerve blocks. It was Oct 2 2013 so I now realize that the nerve blocks must have worn off. That isn't bad timing. Its almost 5 months so I guess that I should be happy they lasted that long. The pain came back quick and hard. I have had a sinus/ cough thing for the last 6 months and I thought this past week that maybe I broke another rib from coughing but have realized that the pain is too spread out and it must be my nerves again. Guess I will decide to go back and get the injections done again.....
How is everyone else doing? Healing hugs
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Hi ladies. My latest update is I woke up in terrible pain and coughed and felt a pop. I went to dr and had rib xrays. Nothing new was noted just the healed fracture from last time. I ended up going to my pain doctor who did the nerve blocks again. I hate those needles in the back but I know that I will get better. The terrible stabbing pain is gone. Hope everyone is doing well. Healing hugs
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Hi ladies,
I need your help. Had BMx on jan 29. I'm having lots of back pain... Mostly across shoulders blades. I have swelling on my cancer side that wraps around under my breast and down my back. My bs and ps don't seem concerned. I can't sleep. I'm getting 2-3 hours a night. Could this be lymphedema? In my back? Has anyone had this? I use a heating pad and still not enough relief to sleep. Please help!
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