Does anyone have post mastectomy pain syndrome

laurajean

Hi, my name is Laura. I was diagnosed with high grade DCIS in both breasts five years ago. After not being able to get clear margins after a lumpectomy, I opted to have a bilateral mastectomy. Now, for the past five years I have had burning pain under both my arms and across my chest. I am on Neurontin and am having side effects from it. I was wondering if anyone else was having this problem and if so, what are you taking for it? Thank you so much.

Moderators

Hi Laurajean-

Welcome to BCO! We hope you find these forums to be helpful and supportive. Not sure if you've found it yet, but our Surgery: Before, During, After forum is a great place to search for answers to your post-mx pain.

The Mods

glennie19

https://community.breastcancer.org/forum/136/topics/747016?page=1

Laurajean,,, sorry to hear about your pain. The above link will take you to a page where post mastectomy pain is the topic of discussion. I hope you can find some help there.

As a side note: I take Neurontin for another type of nerve pain, and it works for me. There is a related drug, called Lyrica,, which could possibly work better for you. Just wanted to mention that. Best of luck.

Cilla60

Hi Laura, I'm Cilla

I also had a bilateral Mastectomy in 2013 stage 3. Many Lymph nodes were taken out. I was given what you had but it was to strong, so I never took it. Are you taking a high dose or the low dose? At that time I only had tingly, numbness on my left side under armpit. So I was able to handle this without medication. Until I had heart failure in December 2015 and was put on directic and blood pressure medicine for my weak heart. Now I am having burning in my armpit and shoulder bone pain. I questioned about the directic and blood pressure medicine causing my problem because the burning pain became intense. Said, "No" but I found out it can cause other problems in my body. Question 1: Are you on any other medication? Question 2: Did your cancer doctor say it was post mastectomy pain syndrome? What is this? In a couple of weeks, I will be having a nuclear body scan to see what is causing my problem. Did you have any tests as well? Have you asked your doctor about any other option? I have no answer but questions, Sorry!

katykids

There is a whole topic devoted to PMPS here. Hope it helps.

laurajean

Cilla, I am sorry to hear about your heart trouble. I went to a pain doctor who diagnosed me with post mastectomy pain syndrome. He stated that my intercostal brachial nerve was damaged which explained the intense burning that I feel under my left arm and across my chest. I am on a high dose of Neurontin which is causing me to have short term memory loss but when I tried to reduce the dose, the pain was too intense so I was looking to see if anyone had any ideas about treatment. I wish you the best of luck. Take care.