Post Mastectomy Pain Syndrome (PMPS)

Honeybear: You are so right, this disease radically changes our bodies and I'll add that it does so in ways never imagined or for the most part not reported in the professional literature. BCO is one of the few places where the real story is not only reported but also supported by others with similar experiences. There is a poem by Danna Faulds in her book Poems from the heart of yoga that I have turned to in the past and find it again resonating with the life I'm living in this moment.

"In the willingness to feel there is healing. In the choice not to closet, cast aside or deny experience energy is freed and I dive deeper into life..."

BCO is a place where women are free not to closet their experiences. Thank you for sharing yours.

Falconmarks - TEs are absolutely no fun. My grown son says I complained every single day the the 8 months I had them in. It usually helps if you slow down the volume of fills. I finally realized I wasn't in a race and only got 25-50 ccs at a time. Below is a link for Exchange City where you'll find lots of women suffering through TEs and contemplating future implants. My PS required at least a 2 month wait after completing fills before proceeding to implants. Good luck.

https://community.breastcancer.org/forum/44/topic/728266?page=1223#idx_36663

Falcon - the nice thing about BCO is - no one is ever in the wrong room. I've met friends & learned things from every single thread I've tried. Wishing you the best.

My skin is hypersensitive, allodynia, would not permit to add the chilly cream. I use a compounding cream containing Lidocaine/Ketamine/ Ketoprofen Amytriptilline and Clonidine. It helps with the burning sensation on the skin.

I am planning to see my pain management dr next Monday to discuss these injections!

I don't know if you are on Facebook? There is a group called "Surviving Post Mastectomy Pain Syndrome." There are a few women on there who have had the injections and there is quite a bit of conversation about it. It seems to have helped some more than others.

Mary Lou

There are 2 groups

Surviving Post Mx Pain Syndrome and also Post Breast Therapy Pain Syndrome. I thought the first one mentioned was where the thread of comments on the injections was. Hope this helps!

Mary Lou

MaryLou Honeybear and LoC: I hear you all. My surgeon gave me the same look, said he had only one other patient with ongoing pain post Bilat Mast but it suddenly disappeared. Needless to say I was shocked, felt unsupported, and knew that he was not current in his knowledge of what happens to patients after surgery. Fortunately, the one doc I could count on to understand, validate my experiences and to work with me on finding treatment options was my internist who had breast cancer and still suffers consequences of treatments.

I have been on Gabapentin (1200 mg) for several months and have been tapering down my doses and am now on 600 mg a day with one am and pm. I do have more intermittent phantom breast pains and general soreness and tightness. The night time dose does help me sleep and I may get down to just that one. If pain gets to interfering with my life I'll up the doses. For me, I'm doing this dosing modification on my own as I am really the only one who knows how I feel day to day. Late afternoon is the most painful for me, but I've found that a soaking bath and a glass of wine provide a comforting relief.

Lou23: Have you started the clinical trial with capsaicin cream? I tried it but burned a bit too much to use three times a day for months before I could see results. I'm wondering if there is any change in protocol from the 1993 published findings that it did work.

Here is the link Capsaicin study

I had a UMX on August 18 and am having pain that's different from the soreness after surgery. I'm not having any chest pain at the site of the surgery but I'm getting sharp, shooting pain that extends down the length of my arm to my palms and pinke finger and a tingling sensation as if I've hit my funny bone/ulnar nerve. I thought I did my research before the MX and was only afraid of lymphedema. My arm isn't swollen so it's not that so I suppose it's PMPS. I didn't know that this was a possibility after UMX, I had only read about lymphedema. I guess I'll notify my BS about it.

I had a modified radical mastectomy and lymph node dissection (2 levels - 13 lymph nodes removed) on Aug 28th and am still having a lot of trouble lifting my arm. My chest wall is tender and the skin reacts to the slightest touch even my sheets of cami. I get stabbin and shooting pains under and down my arm sometimes across the chest wall. My MO suggested seeing my family doc to get a prescription for either an SNRI, Lerica or Gabapentin. Do any of these work? I have a prescription for medical marijuana and have been getting some relief if I use it every day, but it has to be eaten, smoking or using a vaporizer does not seem to have the same effect. Given the potential side effects from the other meds, I'm thinking of just continuing the marijuana and hoping for improvement over time.

Do the drugs work? I think I'd be willing to try them. I need to get my arm working os I can start radiation.

Thoughts?

Thank you Robin LK. How long did it take for the physio to work. My radiation oncologist seems to expect it to get better overnight:(

Trying to follow through although some days I can't do all of the exercises because I am in too much pain.

I belong to the facebook group and find it very supportive, informational, and really does focus on PMPS in all its various ways of showing itself.

Hi Magic light. Thank you for your story. Yes I'm realizing that this is going to take awhile. My initial treatment was delayed because of administrative errors at the cancer centre and that delay was apparently okay, but if I want to slow things down its not. Realizing that has helped me to not stress so much about the time it is taking to get back my ROM - it has only been about 10 weeks since the surgery and I still have a fair bit of scabbing on the incision. I think that the goal of radiation 6 weeks after surgery is unrealistic!

Is the PMPS facebook group a closed group?

Short term Gabapentin 300 mg 3X a day and an awesome PT (massage to break up scar tissue) worked for me. After a month, I tapered down to my previous bedtime dose of a single 100 mg Gabapentin pill for prevention of migraines (I could not tolerate daytime Gabapentin while working). I feel like finding the right PT experienced in MX patients was key for me. My first young PT was essentially useless. Well, I did rebuild strength, but the pain/tightness in my chest was debilitating. My first therapist did not do any massage but showed me stretches and resistance exercises. The stretches helped minimally. I had almost immediate relief after seeing my second PT, who did massage to break up the scar tissue. Massage by my PT continues to be key for me. I still see this PT for tune-ups (knees, back, neck, side and shoulders) weekly -- I pay. It changes my whole outlook on life when I walk out of there without pain. The musculoskeletal SE from AI's have been difficult for me. My Breast Surgeon, head of Breast Surgery at Brigham and Women's/Dana Farber, made no referral or recommendations -- I requested the prescription for PT. He did not offer anything other than connecting me with a prior patient who speaks publicly about breast cancer. She had found an effective physical therapist in Connecticut, hours from my home in Massachusetts... A kind woman on BCO (Massachusetts resident) saw my post asking for a PT recommendation... This site is the best!