Post Mastectomy Pain Syndrome: How are you coping?

I had right mastectomy May 2015, and have severe nerve pain.

I have severe nerve pain. Are you in the Emory study yet? What can you tell me about it?

I've had two massages, and it helped a lot, along with heat/ice. What is involved with the physical therapy, and does insurance pay for it? Thank you.

My physical therapy was both for post surgery pain, range of motion and lymphedema. My insurance paid for it because I had lymphedema BUT, I think if you explain that you are having pain the doctors should be able to get you insurance approval. (Sometimes you have to fight a little for the extra...but needed....services but it's worth a little tussle). I had about 5 sessions where the PT showed me several exercises to do on a regular basis and gave me a packet of information with the exercises. They really helped. Post mastectomy they will usually give you a sheet or two of exercises to do and a schedule of when to do them and how much. You don't want to over-do but you want to get all the parts moving and supple as well as possible.
It can't hurt if you follow the 'easy directions' and not doing them can cause longer lasting pain and tightness. I'm afraid that sometimes the pain is due to nerves that were disrupted during surgery and you might always have some pain or twinges. I still do sometimes but mostly I've healed up ok so I think it helped. Massage is great too and you can get massage therapists who specialize in post mastectomy and coordinate with your PT's plan. Hugs.........

Thanks...I have tried massage, and it helped. I also alternated between heat and ice. I think it flared up worse than usual because I hadn't kept up the self-massage and heat/ice treatments. I've just now taken gabapentin, so I'll see if that gives me relief. Thanks again!

I was not given any exercises to do, but my surgery did not include lymph nodes.

Actually, it's good you had no lymph nodes messed with. They are pesky little devils.
I highly recommend seeing a PT as well as the massage therapist. I found both helped. As few as 2-3 visits with a PT would give you some insight into the muscles and nerves involved and options on exercise and movement that might help. I hope you find some relief. Keep us all posted.
I am researching the use of marijuana for my husband who has Stage IV cancer. In my research through the National Cancer Institute and other sources of good reputation (provided via links from our moderator, Colleen) I read that certain properties of marijuana (CBD and THC) there is a very powerful combination of anti inflammatory and pain reduction. It's fortunately legal where I live, both medically and recreationally. We are trying different strengths and combinations for my husband's severe pain. He is on pain medications but the marijuana seems to be both working as well, if not better, and seems to be enhancing what he is already using. This is all under the watchful eye of our doctors. The research is still small because of the legal issues, but it might be something you could consider? I'm not personally a fan of the effects of marijuana BUT, I am considering it as it seems to show promise with tumor suppression in breast cancer and metastasis. Side effects seem to be minimal. Think this natural substance may have gotten a bad name it perhaps doesn't deserve. Just an option to manage the pain as you work through the massage and pt?

Hi @madijen,
I just joined this group because I have been taking gabapentin for pmps for a few months following a bilateral mastectomy. I have what I call taser pains and horrible internal itching that’s driving me crazy. I’m thinking I need more gabapentin, taking 300mg currently. I know this is making me so uncomfortable and I’m so sorry you’re having the same problem. I have yet to find anything that totally stops it.

I’ve been continuing to search for some help for post mastectomy pain syndrome. I had 7 surgeries after a bilateral mastectomy because of an infection and radiation causing my skin to be compromised and not able to heal. I now have one implant and a gnarly scar. The pain and itching are extremely uncomfortable. I’m taking 300mg of gabapentin but don’t like the side effects. I’ve recently had some acupuncture tx and massage which have helped. I’m exploring medical marijuana and found a lotion containing THC that seems too be helping with the pain. I’m going to try a combo of THC and CBD that is supposed to help with pain and inflammation. Has anyone else tried this?

My husband has a Stage 4 cancer of unknown primary (in other words they don't know what type of cancer it is). He has started on medical marijuana (CBD and THC) for inflammation due to the cancer and also due to severe foot pain (caused by a previous injury). It has only been 9 months but.....he continues to use the Gabapentin for pain with some relief.....and his tumor has shrunk, the overall cancer activity is going down and his pain is much better due to the combo of the gaba and marijuana. It's too early to tell but he has found relief from the pain. I'm hopeful that we might someday be helping our oncologist write a paper on the positive effects of CBD and THC on marijuana progressions ( ha ha). He uses the capsules and chewables at night just before sleep and it hasn't interfered with his daily routine. As a breast cancer survivor I am seriously considering using marijuana as a preventative as well. There are few overall studies as to the positive effects of THC and CBD because of the illegal status of the herb nationally, but there is an interesting study by the National Institutes of Health you might look at. There is some scientific evidence to suggest it has positive properties for both inflammation and cancer. Hugs.