Post Mastectomy Pain Syndrome (PMPS)
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Hi Veggie, welcome to this thread. I am sad to report I have given up on finding a cure for my pain. I go to a pain Dr who gives me some percocet. I take 3 a day. It really does not help, nothing does. He told me nothing will relieve the pain I have. I just live with the pain. It sucks, but after spending so much time trying to find someone who could help me I gave up..
Physical therapy helped me right after my surgery for range of motion. Any other PT I had did nothing. There comes a time u have to let go of the therapist. They do not help and do not understand what we have. They have been taught physical therapy, but not therapy that helps us.
The whole purpose of this thread is to let women know what could happen to them after surgery. The breast surgeons just want to slice and dice and see ya later alligator. They finish their work without saying a thing about possible side effects after surgery. When a patient complains after the surgery they play dumb and say gee I have had no patients have the pain u r telling me about. This is a boldfaced lie. How could they not know. We are proof there is a serious problem here.
I wish I was not so negative. I hope someone sees this thread that can help us. Hugs...
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Hi Veggie, I got no useful info from anyone. I am on percocet 10 mg, 3x a day. and it does nothing at all. I did have tens. Its a hoax as far as Im concerned. Did nothing. Any exercise that help u is a good thing. I go to the pool everyday. I am good while in the pool, but when I get home I start to hurt more. The more I move the more I hurt. I cant sit on the couch all day so I continue to live my life as best as I can. Hugs Hipp
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veggiegal: When it comes to remedies and treatments for PMPS - it is a subjective issue. Pain is a subjective issue. What works for some, will not work for others. So try a TENS unit. Try any non-invasive, non-addicting remedy, - as something might help relieve the pain. If narcotic pain meds do not relieve the pain, do not use them.
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veggiegal - I received some instructions on stretching exercises from an OT Lymphedema Specialist. I do the stretches 2x everyday. I can tell when I miss a day. It helps keep everything loose and it helps the pain. I also attend a yoga/tai chi class 2x a week and that helps me too. The slow movement and the slow stretching is key for me.
As whippetmom said, what works for one won't necessarily work for others ... but this is what has really helped me.
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Hey ... nice to have the header back for this thread ... it's been blank, at least on my computer, for some time.
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Veggiegal: Since my BLM 2 years ago I can gladly say that I am finally pain free from my PMPS symptoms. Not free from the tightness, but it seems that I've adapted to that sensation gradually. As I said in earlier posts, acupuncture worked for me on the radiating arm pain, but not for the tight cord feeling. Yoga has loosened me up considerably, and I still massage the restricting scar tissue with lotion.
I wholeheartedly agree with Whippetmom; try anything that is non-invasive and non-addicting!
Dawne-Hope - sorry about the blank header. I've had to step away from the forum and neglected to replace the header!
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Deeds - Welcome back!
No worries re the header ... I just thought it was my crazy computer!
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Vegg, I usually water walk and swim around, nothing structured.
Deeds, nice to see you!!!
I want to say I just give my opinion on the experiences I have had. I am all for everyone trying whatever might make a difference with pain(I did). I wish some of these treatments worked for me, but they didn't.
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Nah, no much crawl, but something more like the dog paddle lol
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Just found this thread....haven't read all 22 pages though! I finally found a PT who specializes in dealing with women who have had a mast....she had one herself. I found that most of my pain was stuck muscle fascia and a lot of cording. My muscles keep wanting to 'cord' back up. It hurts a lot. The massage she does to release the cording us a pain like no other but it works. If I could afford it I would see someone who practices myo-fascia release. I know that would help a lot. I kind of feel like at this point my pain is tolerable and hope with time it goes away.
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I haven't been here as much as I used to be but when I saw this thread,I was so excited! I have felt so alone with this pain for so long and nobody understands.I should have known to come here,bco is all that got me through diagnosis and treatment.As you can see by my signature,my surgery was in June 2006(getting close to that 5 year mark).I had a bilateral mastectomy and 19 lymph nodes removed.I then had tissue expanders followed by silicone implants.I am in constant pain from the back of my left shoulder blade,it runs up my neck into my ear and eye and also radiates down my left arm to my fingertips.I have neuropathy from Taxotere and was diagnosed with Type 2 Diabetes last year.I have lymphedema in my left arm as well as truncal lympedema,my side stays swelled constantly.I feel like I have a basketball under my arm.My last PM dr just wanted to shove Oxycontin down my throat.I found a new PM dr and she has me scheduled for an intercostal nerve block on Wednesday and has referred me to a lymphedema clinic.I am on the Butrans 20mcg patch currently along with Percocet and 450 mg of Lyrica per day.She told me to crush some of the Percocet in the Voltaren gel and apply it topically and it does help some.Nerve pain horrible and for the first time in my life I contemplated suicide.When the pain is always there it just wears you down physically and emotionally.I am going back to the beginning and read this whole thread and check out the links.0
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Question I am 7 months out from right mastectomy and I wore my bra with my silicone prothesis yesterday shopping. Late yesterday I started feeling pain it is a vey specific area and lightly touching it hurts like a bruise It's right where my skin kinda creases I am scheduled to have reconstruction in a week. What could this be? There is no lump or discoloration And it's Saturday so I will worry all weekend Urgh!!
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mahometomom62 - I cannot wear a bra because of a similiar issue. It causes a bruisy/sore area only on my radiated side, just under my foob. I believe (for me) it's cording issues. I have several of these sore spots all around my stupid foob.
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lisaelder: There are several doctors in the U.S. who are now performing lymph node transfer with success in some women with lymphadema. Dr. Marga Massey of NOLA [offices in Charleston, Chicago and New Orleans, I believe] and Dr. Julie Vasile - in New York - are combining this with autologous flap procedures.
http://www.drmarga.com/whatlymphedema.html
http://www.julievasilemd.com/pages/lymph-node-transfer
I would pursue anything which might give you some relief, if your symptoms are as unbearable as you describe. You have every reason to live and survive this. I am praying you find some answers here!
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DianeDiane1968: In answer to your question, I also have had some of those phantom sensations. Also, when I drink cold beverages the coldness courses through my neck and chest region. Weird. However, given my tendency to be overly warm, it's not unpleasant. My BS (also my PS) had not heard of that sensation.
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Diane,
I too get hot, cold sensation along my mastectomy scar. It is wierd to drink something hot or especially cold and feel it across your chest. So you are not alone.
I still have nerve pain in my arm, some days are better than other depending on what I do. Being able to do the manual lymph drainage, MLD, has helped to lower my pain levels in my arm & chest.
I have had several bouts of cellulitus & that causes my pain level to go sky high. The last time it went into my arm & man did that hurt!!! I noticed this time when I start having higher pain levels, then next day the cellulitus has flared.
I am now getting hyperbarics oyxgen treatments to help my skin get healthier so I can have a scar revision. I sure hope this helps the cellulitus. Getting cellulitus ever couple of months is gettin old fast. So I really hope this helps. NJ
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Reading all these posts about pain just breaks my heart.....I try to stay very positive but sometimes I just want to yell...it's not flipping fair...enough is enough! I was diagnosed Dec 2010 with DCIS stage 1. had BLMX Feb 2011 with tissue expanders. We have been expanding slowly for the last couple of months with no problems until now. My last fill 2 weeks ago caused some discomfort. The standard tight feeling. Then all of a sudden I was and am coming out of my skin! My left breast is killing me. It's the strangest pain. Not aching like normal pain but I have a spot that feels like it's on my chest wall under the expanders that feels broken ;(. When I take a breath, it feels like my rib is broke, sticking me. I haven't been on pain med's so I called the doctor. He prescribed Vicodin. It's not touching the pain! I don't have a fever & there's no redness. The Dr. Says it's probably a irritated spot where the expander is rubbing & making a sore spot? This hurts like he'll, has anyone else put there experienced anything like this?
thanks - Cori0 -
Cori: I had that same piercing pain for two weeks but it was relieved as soon as I had a subsequent fill. The ribcage can be compressed with tissue expansion. Just guard your upper extremity movements to avoid further trauma to the ribcage.
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Thank you Whippetmom!
I was hoping that would be my case too. I called my PS and asked if I could see him sooner than the 18th & give it a little more water. Just in case there was a corner/ridge that could be popped out of it's position? He said it would just hurt more....I think he's just too busy to try. I tried to manipulate the darn thing myself, the pain is becoming a little more ' dull' then the stabbing / piercing pain.
Thanks for responding!
Cori0 -
I just found this site and forum. Oh. My. Gosh. I am about to weep in relief... I am not alone! The weird cold sensation when drinking a beverage, the creepy burning skin sensation (like when you have the flu), super bothersome armpit pain (like razor stubble on a sunburn), and the strange lack of information from my otherwise fantastic surgeon. Hello, gals! So, my deal is: about 4 weeks post double mastectomy. Stage 1. This is my third time with cancer, different kinds, but I am told we got it all and not to expect recurrence. Which is great, but I can't seem to get off the Percocet. Not because I am addicted (though this worries me) but because the skin pain is so awful. I just returned to the Y for some working out, and this helped some. Thanks so much for starting this discussion; I will read everything on here!
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BTW, -- and my apologies if this was addressed earlier; I have read posts for about an hour but have onlly gotten thru a small percentage of them -- has anyone talked about exercise as giving relief to PMPS? Not just physical therapy, but going to the gym and using the lat machine, etc. It seems as though it might help if it increases blood flow to the area. Again, thank you all so much for your posts; you helped me a lot tonight.
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k8sonny - I have lymphedema and implants ... so weightlifting is a bit tricky ... but since January I've been working with a trainer and overall my pain is less (I have very little now if at all) and it has helped with the lymphedema. I just have to be extremely careful and go slowly. I may never lift more than 10lb hand-held weights but at least it is something. So yes on weights ... but know that if you have implants and/or lymphedema ... it can limit you on what kind and how much weight training one can do. I've found yoga/tai chi to be extremely helpful for me ... it helps with range of motion and keeping everything loosened up. I hope you find something that helps and works for you.
[[hugs]]
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I'm now seeing a PT and finding it somewhat helpful. She gave me some exercises with 1 lb. weights and even that is a killer. It is true you body is totally different after mastectomy. My upper back is the biggest problem and the PT said I have "functional scoliosis" from guarding my chest for so many months. I guess my spine curves over to the side in my upper back. That is definitely not helping the pain situation. She says it will be several months of exercises then a recheck. The biggest disappointment is that I just can't do all the stuff I did before and have to pace myself. I really thought I would just get the whole thing over with by doing the BMX and could go right back to my life. It's not happening as fast as I thought it would, to say the least. The only time my back is really comfortable is if I take Vicodin but I'm limiting that to one a day. (Vitamin V!) Dragon
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Hi Dawne-Hope! Thank you for the encouragement! I went ot the Y 5 times this week and did gentle stretching and weights. Yesterday, I did not need a Percocet until almost bedtime! I do thnk it has helped. I still have the Tissue Expanders (first fill: 2 days from now). Gosh, if exercise helps this pain, I wiill have to become a gym rat.
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k8sonny - So glad it's helped! Just be careful!!!! Lymphedema ... I cannot express to you in words how badly I hate it! I don't know if you had any lymph nodes removed ... but please just go slowly! You don't want to get it if you can help it!
So, so glad you're better! No percocet is awesome! Good luck on your fills! Near the end of my fills ... I couldn't do much of anything stretching wise because everything was so tight. Just take it slow, do what you can and hang in there! Again ..... sooooooo glad you're better!!!!
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OMGosh, That fireant biting feeling...That exactly describes what I have under my right breast and under my arms at times! I had BMX in Jan '11, with reconstruction, and had my swap surgery in April. The pain that courses under my "breast mound" is burning and just like fire ants biting! It is really irritiating and I haven't found anything yet which relieves it.
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Dear cgraziano, I am so sorry to hear of your ants. In so many ways, I wish I had been told ahead of time what to expect; I think the aftereffects of the BMX would be easier to manage, both physically and emotionally, if I had felt prepared. This forum is wonderful, but how crazy is it that we are getting our information HERE and not from our docs? Is anybody else out there feeling excessively COLD after BMX? Like, is breast tissue particularly insulating? I feel freezing all the time now, which exacerbates the fire ants and irritated skin sensation. Bleh.
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k8sonny - YES to the cold! I think I've gotten used to it but a big resounding 'yes' from me! This fall was my first with implants and the changing from summer to fall ... it was shocking how cold I felt. If you think about it ... breast tissue & fat ... it would be totally insulating and now it's gone. Now it's just skin covering muscle with no insulation whatsoever. I wore a lot vests this winter and spring and it provides some much needed insulation! I think I've gotten used to it but the whole cold factor was a shock to me.
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k8sonny - YES to the cold! I think I've gotten used to it but a big resounding 'yes' from me! This fall was my first with implants and the changing from summer to fall ... it was shocking how cold I felt. If you think about it ... breast tissue & fat ... it would be totally insulating and now it's gone. Now it's just skin covering muscle with no insulation whatsoever. I wore a lot vests this winter and spring and it provides some much needed insulation! I think I've gotten used to it but the whole cold factor was a shock to me.
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I found that my implants seem to absorb the cold during in the winter, causing me the feel chilled a lot of the time. So, I thought during the summer the implants would be warm...they are still cold, especially in an air conditioned room! My foobs always feel several degree's cooler then the rest of my body and sometimes they are down right freezing. I have gotten used to this interesting aspect of foobs but at times it can be annoying.
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