Post Mastectomy Pain Syndrome (PMPS)

Notbuying - PT massage & stretching made a great deal of difference in the pain of my radiation fibrosis & scar tissue. I still have some continual pain 2 years out, but nothing like was it was before I found the good PT. Of course I have to keep up with the stretches & exercises on a regular basis or everything pulls back tight again. Although I know this is forever, sometimes I'm not very good at compliance.

At 7 months post BLM I am still surprised that I need daily stretching to just keep the pain level at a 5. I can see my scars move over my chest when I stretch, so do not think I have adhesions but I sure can fell the initial pain when I stretch and then it decreases after stretching.

I believe that my issues were caused by a combination of  all of my treatments, and the way my body heals.  I think that each of my medial providers did an awesome job, but the combination of all the treatments left me disabled.   I'm 5 1/2 years post diagnosis, and I still have all of the issues, if get busy and don't do my stretching for a few days the adhesions all start to grab hold again.  I think this is just my new normal.

Linda, since the group is secret, nobody can see outside the group! :-)

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

Nice to read you here too!

Gentle hug

Sonia

I am so glad to have found this thread.  I am just over 5 years out and still have pain and swelling.  Had double mast.  The pain is in one arm (not the one the lymph nodes were removed from), very bad in breast area and scar underneath, down opposite trunk and now in one lower leg.  My leg isn't to bad, just a regular stocking will work.  But I have been in compression for the past 5 years day and night.   Pain meds affect my ability to drive. 

Is it to late to get PT for this ?  

Thank you, Linda.  I had tried 4 LE therapists before I found one I thought was really helpful.  She was "LANA" certified, a different technique.

  I was wondering if the "pump" might be of some help at this point.  For any of you that have the pump, do you need a medical RX to get one ?  How much relief do you get from the pump and is it lasting relief ?

Thanks

Aw Katy,

I am sorry things are so overwhelming. Chronic pain makes it difficult to have anything else on our plates. Be kind to yourself, many times it takes just as long to heal as the time we spent in treatment.

Take care of yourself. Sometimes we need to focus on getting better before we can be there for others. It feels selfish, but it truly is important.

I hope things start to turn around for you.

Thank you Robin. Trying to take more walks and started acupuncture after all! My husband drove me. I have done it before for headaches with no relief but this has seemed to take the pain down a notch.

Thinking out loud--it surprises me how the different spots have different turns with pain. Sometimes the left incision hurts. Other times the right suture spot hurts. And other times the right fat graft spot stings.

3 different bras again yesterday and maybe 10 minutes without one--and it felt like there was one on anyway. I tried a Coobie. That lasted for a good bit. But, by the end of the day, I had to check the package to make sure they really sent a Lg and not a Md by mistake. I am on the hunt for a fitted tank top that has no seam or support under the boobs that I can pull on because of limited ROM.

Stupid things feel like they are humming right now.

I hope you had a Happy Thanksgiving!

Thank you rennamr. That is not legal in my state yet. And I have never smoked it as the smell makes me nuts. Like cilantro! But I hear there is an oil form for capsules. I am doing PT with someone who has experience with MX. Just 6 sessions in and I need to accept that Rome wasn't built (or rebuilt) in a day. Your improvement is encouraging. Thank you!

Because you have been doing these stretches and exercises, are both arms still the same size as each other? My left am, that was the side that had radiation, is smaller now especially at the wrist

Hiya. I've had a read of the last 1/4 of these posts and they have helped me become more educated. Thank you everyone for this forum

I had PMPS for a few years post BMX (surgery was April 2011). I quit all the pain meds within the past year to two years depending on the medication. I took gabapentin (neurontin), pregabalin (lyrica) and amytriptaline. They helped me cope with the pain. I also took an antidepressant venlafaxine (effexor). I also had some PT, acupuncture, cranial sacral massage and chiropractic manipulations and they all helped. I currently still have a weekly massage. I also do stretching as I was taught to do. This is probably the best thing I do for my nerve pain.

Anyway, all was good until the past few months. The pain in one of my breasts has increased - it feels like I want to scratch it off - if that makes sense - it feels "deep". Some of it is nerve pain, I know because I recognise it, but it seems very intense. I don't understand why it is getting worse rather than better.

Some of the pain seems to be coming from some of the area where there is scar tissue from my reconstruction and that worries me. Also, when I lie on my stomach for my massage this breast is very painful - painful like before I had my surgery.

I'm worrying I could be facing a reoccurrence but I'm trying to get my head in the place that maybe it's just nerve endings regenerating.

Anyway, I would be grateful for any ideas and support.

Thank you.

i interact with two FB groups: Surviving Post Mastectomy Syndrome & Post Breast Therapy Pain Syndrome - they show as closed groups but request to join. I like these because the posts & responses do not show to all of your "friends". Lots of good info & comfort

"Surviving Post Mastectomy Syndrome " is a close group. Once you click on the address https://www.facebook.com/groups/759940397434876/ I will give the accept to the group!

From outside of the grup cannot seen any post by those who are not in the group!

We are already a group of 100+ members and glad to be helpful! I quote from the group description:

"We hope that each one of you receives what we all need: camaraderie unique to our shared condition; an exchange of information, experiences, and suggestions offered to reduce or overcome our pain, and enhance continued fulfillment of our individual aspirations"

Gentle hugs to you Ladies!

Sonia

Since I don't do Facebook, I am sorry this subject has mostly moved.

Thanks, I agree re: fast feedback and discussion of many options for dealing with (as of yet no curing of) PMPS. I have just made and initial contact with pain management doc and once I get records from surgeon and primary care doc sent, will set up appt. Will report back on Facebook as that is where there is more discussion occurs about this awful pain syndrome. Fingers crossed and hopeful.