Post Mastectomy Pain Syndrome (PMPS)

magiclight

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

hello Everyone,

I had my double Mast May 13, 2015 and have expanders in. I am full up to about 500ccs. I have a lot of pain. I also have chronic pain problems anyway for years, spinal issues, Radiculopathy and CRPS/RSD (Chronic Regional Pain Syndrome/Reflex Sympathetic Dystrophy). My pain management Dr. is trying tohelp me with everything given that he knows my history and he is now helping with managing the pain through the cancer/reconstruction, etc.

My question to all of you is, how bad is your pain? I know everyone is different but I was told after a fill you will be "sore" for up to 48 hours or so. Then some have said it is extremely painful. Well, I go with the "extremely painful" line. Do any of you ever get the pain in your BACK???? After a fill, doesn't matter a little or a lot I feel like I had the muscle pulls, then stretching, which I expect. But then it feels like I got speared through my breast, chest right out through my back! I can hardly life my arm. This time only the right one. Last time it was the left one. I can't sleep, it's so hard to breath deep. My sternum even hurts. I feel like I was beat up and almost stabbed to death by four or five men! I know I am exaggerating but that is how bad it gets. It takes about a week to calm down! Luckily I am filled to where I want but they have to do 2 more fills for the dr to have his extra room for the surgery??? Whatever. Just two more and I'm done. Then I am going to take a break for a while before I get the implant surgery. I REALLY need a break from the hospital and doctors!!!

Thanks for listening to my rant! Any responses about your experiences, especially back pain would be appreciated.

Teri

MinusTwo

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

Falconmarks

thanks Minustwo. Sorry I'm in the wrong room. I thought it was any kind of chronic pain. Thanks for the referral to the other room. Have a good day and be healthy as possible everyone!

MinusTwo

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.

lou23

Hi, I was wondering if any one has tried chillies pain relief capsaicin patches or paste. I have just been offered to do a trial to help me with post masectomy pain.?

Soniatoronto

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.

kriserts

There was an article in the NYTimes about PMPS:http://well.blogs.nytimes.com/2015/06/08/pain-afte...

They reference a video on this page (scroll down a bit): http://cancer.ucsf.edu/breastcarecenter/treatment/....

Has anyone here had an injection like this? Anyone in NYC had it? I'd like to find a doctor who will do it for me, would love a referral.

mlp730

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

kriserts

Hi Mary Lou, thanks for the info. I can't find that FB page, are you sure that's the name? Also, I hate how FB shows what pages I've joined, or my "likes" to my friends list. I really don't want everyone I'm connected to on FB knowing I have this condition.

mlp730

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

janhart

kriserts, both of the FB groups mentioned are private or closed groups. You can ask to join and nothing you post or discuss will show up outside of the group. A lot of good info and much support from both groups.

magiclight

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.

magiclight

Janhart; I've signed into both groups and they are active and informative

magiclight

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

Soniatoronto

The groups you mentioned is a closed group, but I would be happy to approve your request!

I am the co-administrator of this wonderful, very friendly and helpful group:

https://www.facebook.com/groups/759940397434876/

chocomousse

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.

LindaKR

check out the step up speak out website....the explain a lot of issues that can occur post my. Inbounds like nerve impingement, mine happened after rads. PT/OT had me doing stretching and myofascial release, hardly evervhappens to me anymore. It was the LE therapist that explained it.

Gina4h

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?

RobinLK

Click here

Click on the above link. Sounds like cording/Axillary Web syndrome. My Lymphedema therapist helped with this. It can come and go.

Gina4h

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:(

RobinLK

Currently mine is back, but massage and stretching will help dissipate it again. This is my 4th time dealing with cording. It is annoying to say the least. Length of time depends on your body and your PT.. Stretching exercises that have been assigned are important to follow through on also.

Gina4h

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

RobinLK

I completely understand that.

magiclight

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.

magiclight

Ginah4h: I posted earlier about my experience with Gabapentin (varied doses) and since then I'm on 1200 mg most days as tapering off proved to lead to increased pain. I find it is such a personal experience and each day brings a different challenge in how to deal with the feeling of the iron bra that is lined with barbed wire. Some days it is just so tiring and other days a bit less so. Finding some relief may take time and I'm thinking you RO is engaging in magical thinking about overnight relief. If there is anyone out there with a magical overnight pill please please let us all know.

Gina4h

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?

LindaKR

I think that what we post is visible to the public, it's just that you can't post unless you are a member, unlike facebook private groups where you have to be a member to see what anyone has written.  I just logged out, did an internet search on the PMPS and could see the posts.  Moderaters would be able to answer that question better.   Not sure how to tag them for an answer.

daisylover

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!

Notbuyingit

i am new to this site - 2 yrs post left side Mastectomy & recon - just back from a visit to my PS during which he said there was nothing else to be done for my pain except possibly massage & chronic pain meds...blames most of it on the Rads (they had actually tried to talk me out of radiation post recon)

am happy to see i am not alone - not too many testimonials out there in October telling how it really can be for a lot of women - the never ending tightness & pain

will check out the Facebook sights - interesting about the shots - makes me angry tho if something like that really exists & really works that well & they are not offered to every woman suffering