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Jan 21, 2010 08:53PM
Thank you so much for bringing attention to this problem. Like all of you, I stumbled around for a couple of years before I heard about PMPS. I went to multiple doctors and had multiple types of therapy. Like fogandroses, I go to a leading cancer center and almost all of the doctors there told me they'd never seen PMPS, never heard of it. That is so demoralizing when you ask the experts to help you and they deny your problem! Even more demoralizing that the problem is caused by cancer treatment, and you have no idea that it can happen!
I am now 4 years out and FINALLY have found a regimen that works for me. I am over-the-moon happy! I finally have my life back. It sounds like everyone needs to do a lot of trial-and-error to find out what works for them. It seems that treatments work for some of us, but not for others. Here's what works for me.
#1. I wear the Bellise compression bra, which is designed to treat women with truncal lymphedema following mastectomy. I do not have any visible swelling or other signs of lymphedema, but the Belisse bra has changed my life! I think the doc at MD Anderson is right on -- he suspects that there is some amount of lymphedema involved with PMPS. You can go to belisse.com to learn about the bra. It needs to be prescribed by a doc.
#2. I see a PT who specializes in lymphedema, as suggested above. I've had several treatments with low-level laser. The treatments have been incredibly helpful. I got my life back after several years of screaming pain! Again, I don't have any swelling or other clinical signs of lymphedema, but my PT suggested that we try the low-level laser anyway. Bingo!! It's made in Australia and is approved by the FDA for lymphedema after breast cancer surgery. Just google low-level laser and Australia, and you'll find more info.
#3. I take very low dose of methadone, very low dose of amitriptyllin, low dose of lyrica and low dose of ativan. I went to the Pain Clinic several times and also to a Physical Med & Rehab specialist. Both were bad experiences for me and not helpful. I finally got hooked up with a fantastic oncologist and a fantastic palliative care doc, as well as an excellent psychiatrist who specializes in cancer issues. Together, they helped me find a combination of meds that really work for me. Very low doses, so I never feel zoned out.
#4. Tried acupuncture for six months and it didn't help. Tried energy healing and even became certified in Reiki. Didn't help. My oncologist finally told me to read "Full Catastrophe Living" by John Kabat Zinn. It offers wonderful meditation and relaxation exercises specifically for people in severe chronic pain. (The book on CD version was great for me; I don't think I'd have gotten the same benefit from reading the printed book.)
#5. Sitting too long still causes pain. Moving and standing is much better. Try NIA movement... it's free-form dance exercise. Worked wonders for me.
#6. I consulted a plastic surgeon twice and both times he told me that further surgery would not relieve the pain and could make it worse. You gotta respect a surgeon who declines to operate and gives you a straight answer. So I never had reconstruction. OK with me because I didn't want to take any chance of making the pain worse.
Hope this helps some of you out there. May you find pain relief strategies that work for you.
By the way, what's the name of the pain doc at MD Anderson. I'd like to write him a note and thank him for taking an interest in this hidden issue.