CancerCompass message board discussion started by Linda D. on 3/15/2004 http://www.cancercompass.com/message-board/message/all,1081,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D. Linda D. Mon, 15 Mar 2004 00:00:00 GMT Linda, I am so sorry that I have just noticed your mail from March 2004 regarding Post Mastectomy Pain. And I am so sorry for your pain. I had my lumpectomies and mastectomy 3 years ago and I am sorry to tell you this but I still have the pain. At least 3-4 days a week I have pain under my arm pit and across my chest - burning and stabbing nerve pain.I have been told by MD that it will go away!! But when? And now no one will give me any pain meds. !!! I have been to a pain center and they want to try me on neurontin which is used for patients with other nerve pain conditions but I am afraid of the side effects.I am thinking of trying acupuncture next. There is very little out there about the syndrome. Good luck with your search for relief. Lucy New York Lucy A. Mon, 21 Mar 2005 00:00:00 GMT Dear Lucy, I hate to say it, but it's been two years and four months since my double-mastectomy, and I still have the "bunji-cord" tighteness and pain under my arms and across my chest, relieved only by hydrocodone (and every other dose or so, I have to take Benadry to combat the itching). The tightness is so bad sometimes that I panic, and I cry, just out of anger. I'm on disability because of it, and no one seems to have an answer. My primary care physician says that because the neuro-muscular pain has been chronic (since waking up from the surgery) for so long, it'll be this way forever. My surgeon never even talked about the lingering effects of the surgery. He just drew little smiley-faces on the exam-table paper to describe what I'd be left with post-surgery, but also forgot to tell me about the sagging, multi-layer skin folds he left behind, which he says used to be part of the side of my breast tissue, and which now are disgusting and depressing to look at. The pain and the unsightliness of my chest are daily reminders of my breast cancer, and it's hard to think positively about non-recurrence when I have these with me every day. I wish someone would develop a remedy for the chronic tightening and pain that doesn't involve habit-forming drugs. Please, God, send that person to all of us who fight this pain every day. We need help now, and it's NOT in our heads. By the way, if your doctors won't give you pain meds, it's time to change doctors. This is a recognized post-surgical problem (lots of references on the web under "post-mastectomy pain", and pain medication is responsible pain management, to which you are entitled, no matter how long you've been in pain. Shame on the physicians who have refused to treat this very real and chronic condition! Sazzy Tue, 17 May 2005 00:00:00 GMT Dear fellow pmps sufferers I too have been experiencing horrendous pain after breast surgery - postmastectomy pain syndrome is the diagnosis, and it's been a long search to find someone who can treat it. The pain is debilitating and feels like someone has taken a knife to my chest and shoved a sharp blade up under my arm. It developed about 8 weeks after mastectomy and has continued unabated. The only time I get relief from it is when I go to bed and don't move - once I move any part of me the pain is there. The pain extends across my chest right down my arm to my wrist, and I am also hypersensitive to touch. I have been to numerous doctors, psychologists, psychiatrists, physiotherapists. Because I had not much movement in my arm, the initial diagnosis by the physiotherapists of my condition was frozen shoulder. I received treatment and pain medication for a frozen shoulder condition for quite some time without any improvement. The diagnosis has since proved to be incorrect. I had the mastectomy in September, 2003, and it wasn't until February this year after searching for answers that I found someone who understood the symptoms I was presenting and was able to treat this condition. While I do have to travel quite a distance to access treatment it is worth it because I didn't know how I was going to live the rest of my life in this state of pain. In the four months since treatment began, I have been able to stop taking Neurontin which is one of the main drugs and reduce Endep being used for my nerve pain. They were drugs that did not take the pain away, but at least took the edge off it, and made it a bit more bearable. I'm now able to move a lot better and my sensitivity to touch has improved incredibly. My chest used to feel like it was set in concrete. The person I found to treat me is a physiotherapist who specialises in treating postmastectomy pain syndrome patients. She is currently doing a PhD thesis on the treatment of this condition. Because I have to travel a long way for treatment I only see her once a month and she gives me a very precise programme of massage and exercises to perform daily. Because I'd been suffering for such a long time prior to receiving the correct type of treatment, it was difficult for me to believe that I could be helped. I have been extremely diligent in doing exactly what she has advised me to do in between consultations and I have to say that my pain has decreased about 50% in the past four months. Although I may have some degree of this problem for the rest of my life, the improvement achieved so far is significant and my life is so much better already. The continuing progress gives me hope that by Christmas I may have a tolerable level of pain without meds. The process is slow and painful, but it is worth it and I have so much more movement in my arm as well. My physiotherapist has explained to me that muscle and nerves in the area have been damaged by both the surgery and the radiation and the whole area is 'pulling' tightly. The therapy I am receiving is designed to progressively 'release' the tightening in order for the pain to decrease. My hopes are now high for a substantial improvement and I feel that the problem doesn't just go away with the passage of time. Based on my experience, it is important to seek treatment that can have immediate effect. Unfortunately, medical practitioners in the area where I live did not seem to know how to recognise or treat this condition in a severe form as they just don't see it - only a small amount of patients present with this problem to the degree that I have it. I understand that possibly up to 30 percent of patients are affected to some degree after breast surgery. The good news is that there is help for this condition out there, you just have to find the right practitioner who knows exactly how to treat it. Pmpsros Thu, 07 Jul 2005 00:00:00 GMT Dear pmpsros, I am very interested in your treatment for this. Could you please e-mail me? happynana Happynana Mon, 28 Aug 2006 00:00:00 GMT I have had this post mastectomy pain syndrome for about a year and a half. The most helpful thing I have found is the lidoderm patches. They help a lot during the day. At night I don't wear them and I have started back on neurontin recently though I don't much like it. It does fuzz out the pain some though and consequently helps with sleeping. I am trying myofascial release. I have only had two appointments to date. If anyone has had anything more specific or any particular luck, good or bad, with this myofascial release, I would be interested in hearing about it. this is a big drag and not well publicized. I think it should be. If anyone is interested in being interviewed for an article, please say so here so that we can be in touch. Sincerely, Pam Anonymous Pam Anonymous Tue, 29 Aug 2006 00:00:00 GMT Can you e:mail me with information about the therapist you are seeing? Thanks. Neighbor Tue, 21 Nov 2006 00:00:00 GMT Can you e:mail me with information about the therapist you are seeing? Thanks. Neighbor Tue, 21 Nov 2006 00:00:00 GMT  On 11/21/2006 Neighbor wrote:Can you e:mail me with information about the therapist you are seeing? Thanks.My therapist is in Sydney, Australia. Pmpsros Sun, 17 Dec 2006 00:00:00 GMT  On 11/21/2006 Neighbor wrote:Can you e:mail me with information about the therapist you are seeing? Thanks.HiMy therapist is in Sydney Australia.  Pmpsros Sun, 17 Dec 2006 00:00:00 GMT Please would you contact me I am 4 years post mastectomy and have chronic high grade post-mastectomy pain. I have sought pain clinic consultations from both Royal North Shore Hospital and Prince Alfred Hospital Sydney, nothing has worked and I don't want an in-plant and spinal stimulator which seemed to be the option of last resort.many thanksAnna Annakristina Thu, 28 Dec 2006 00:00:00 GMT Hi, Please read this link: http://www.mayoclinic.org/news2003-rst/1733.html I heard from another suffer that she tried over the counter alpha lipoic acid and she had great results.  I am going to buy some today.  I just found out about it.  Lets pray its works.  Good Luck Peace,Kphoo  Kphoo Wed, 03 Jan 2007 00:00:00 GMT This is very exciting news about alpha-lipoic acid! I just started taking it when I read your message. Would really love hearing how anyone who is taking is doing.What dosage are you doing?I'm taking 600mg., seperated into 4 doses a day. I, too, have been a long-term suffer with severe pain. Have tried just about everything. Six and a half years.  Objoyfulvt Sat, 27 Jan 2007 00:00:00 GMT Hi, the situation sounds more hopeful for you than for others.  My mom has suffered 3 months with the burning chest, her surgeon said "I think you are addicted to the pain pills".  She can get by with 1/2 Lortab 5morning and night, but we have to find a new doctor to get them.  What massage and treatment do you do?  Do you use ice?  She says it does help temporarily..  Do you use the alpha-lipoic acid?  We live in Utah.  What can we do on our own?  Laurainutah Sat, 27 Jan 2007 00:00:00 GMT Definitely massage! I slept thru the night for the first time...at FOUR months out after getting a massage!. Right now is the time to help her muscles release. Otherwise, you can be holding onto the pain with 'memory musculature'.Hope you know massage. Learn fast. Because, if I could have had it 3 times a day...Who knows...Sweetheart, You're as much of a sweetheart daughter as my own is!Will let you know how lipoic is working for me. At this hour, I'm almost as bad as your Mom. She has 'The Branding Iron". Sure hope she lets go of 'The Razor Blades'. I've just got The Iron tonight.Bless you, your Mom, and Me!Lynn Objoyfulvt Sun, 28 Jan 2007 00:00:00 GMT PS...I can't do it...get paranoid, but there is only one thing that touches neuropathic pain. Marijuana.I had my body back for 15 minutes before my husband of 32 years and my closest friends were in a conspirasy...LOL!!! Walls running goop. I quit, as a Hippie, when I was 18. Still can't do it, but some can. And, it has definitely helped them. I was told by one woman to toke small. Didn't work. Just applying wine. Narcotics DO NOT TOUCH neuropathic pain. Will dull your mind to where I was drooling and screaming at the same time. Enough now! We will get through this!Love, hope, and courage to us all! Objoyfulvt Sun, 28 Jan 2007 00:00:00 GMT  On 1/28/2007 Objoyfulvt wrote:Definitely massage! I slept thru the night for the first time...at FOUR months out after getting a massage!. Right now is the time to help her muscles release. Otherwise, you can be holding onto the pain with 'memory musculature'.Hope you know massage. Learn fast. Because, if I could have had it 3 times a day...Who knows...Sweetheart, You're as much of a sweetheart daughter as my own is!Will let you know how lipoic is working for me. At this hour, I'm almost as bad as your Mom. She has 'The Branding Iron". Sure hope she lets go of 'The Razor Blades'. I've just got The Iron tonight.Bless you, your Mom, and Me!Lynn Thanks so much for writing back.  When you massage do you pull up the skin from off the chest wall as part of the massage?  Or just regular massage all over the chest and underarms and shoulders?  Have you tried using the mirror technique, standing close in front of a mirror and running your hand over and over where your breasts were, and watching your hand carefully (the mind must be engaged).  I read where one lady did this and it told her brain the breasts were no longer there and stopped sending nerve messages or growing and trying to attach to "gone" tissue.  Her pain disappeared.  Mom is going to start that tomorrow too.  I actually saw this on Discovery channel about amputation and how they handle phantom pain.  I lost a finger as a 12 year old and remember phantom pain very well.  It went on for about 2 years.  It was burning, grinding and twisting pain.  This mirroe trick on the brain is supposed to stop it fast. I 'm a nurse and I have an aquaintaance I spoke to today who happens to have a friend over the breast cancer division at John Hopkins University. (They have 1000 mastectomies a year there).  She will email her and find out what the latest and greatest treatments are for this and I will post it when I get it .  My mom is 75 and used to be able to run circles around me ,  She wants herself back and I will do whatever I can to help her.  Laurainutah Sun, 28 Jan 2007 00:00:00 GMT Wow! That's a new one for me! I was talking about a full body massage to relax the muscles surrounding the pain. I will be so interested in what you discover as the latest and greatest...What a great daughter! I want my life back too. And, if your Mom ran circles around you, that's how I was as well.Here's a cheer to us! And, gratitude for loving and wonderful  daughters!I am fortunate to have a daughter as lovely as you....Lynn Objoyfulvt Tue, 30 Jan 2007 00:00:00 GMT Any news yet? Any successes yet?It's been just two weeks on alpha-lipoic acid, but I had one of the best days ever yesterday. Of course, I then overdid a bit, but am hoping that in a couple of days I can report in that it is working. Forgot to do the mirror thing. Will do it right now! Objoyfulvt Fri, 02 Feb 2007 00:00:00 GMT  On 3/15/2004 Linda D. wrote:Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D. Hi, my mom got the horrible burning pain across her chest 1 month post double mastectomy.  We tried ice (helps  temporarily), going nearly naked (feels much better with no material on it), and Percocet and Lortab helped the most, but the surgeon refused to give her any more.  So guess what.  She is much better now...she has been doing the same treatment amputee patients are told to do to get rid of their phantom pain.  Rub the area that hurts, the missing breast area and underarm in front of a mirror watching your hand in the mirror (telling your brain there is nothing there to enervate, to turn off the nerves, talk to yourself out loud or in your mind saying the breast is gone, massage it well).  She uses Emu oil, and I don't know if that has anything to do with it.  She does it in front of the mirror night and morning and after the first week, the pain was dramatically reduced.  She had it so bad for 2 months before she started this.  Try it.  The nerves are trying to re-enervate the missing breast and they respond to this.  Tell your brain to turn them off.  It is truly amazing.  She did not take nortriptyline, or anything else.  Laurainutah Mon, 19 Feb 2007 00:00:00 GMT Yes, we have success after two months of agonizing burning:  read my message #20 on this site of post mastectomy pain syndrome.  Mom is doing great.  She hasn't needed a Lortab for a whole week, and she is shopping a gain and wearing her new BRA!  that is huge progress for her. Laurainutah Tue, 20 Feb 2007 00:00:00 GMT WOW! That is fabulous! I'm doing the massage now as well...I hope it is as effective 61/2 years out.....Thanks for being such a wonderful daughter and friend to us all!Big Hugs for you both!Lynn Objoyfulvt Thu, 01 Mar 2007 00:00:00 GMT I am 7 months post bilat mastectomy & immediate DIEP reconstruction, so I don't think the "phantom pain" thing applies to me, but I'm having problems similar to what's described in this thread.  I had skin-sparing mastectomies.  The first couple weeks after surgery my breasts were numb, and then the pain set in.  For months I felt like they stuffed my breasts with gravel.  The pain isn't as bad as it was, but I have daily problems with breast swelling (lymphedema?) and a burning sensation on my skin.  It's only now occurring to me that this isn't normal. Breast massage definitely helps me in the short-term, but unfortunately it's not something I can do all day long.  I'll meet with my breast surgeon and get his advice, but am anxious to hear about the treatments that have worked for others.  Mary Marygirl Sun, 29 Apr 2007 00:00:00 GMT Can you tell me what the self massage is, and what else you do everyday?  My mom is suffering terribly with this, and she puts ice bags on her chest to bear it.  She is on a Neurontin type med as well and Lortabs just to be able to survive.  Where and who is your doctor? Laurainutah Sun, 20 May 2007 00:00:00 GMT  On 1/3/2007 Kphoo wrote:Hi, Please read this link:http://www.mayoclinic.org/news2003-rst/1733.html I heard from another suffer that she tried over the counter alpha lipoic acid and she had great results.  I am going to buy some today.  I just found out about it.  Lets pray its works.  Good Luck Peace,Kphoo hi, my mother has now seven years post mastectomy pain syndrome.  No doctor in South Africa seems to know any cure.  I would like to know if the alpha lipoic acid worked for you.  Thank you Günther Thu, 13 Sep 2007 00:00:00 GMT Hi, I'm new to this board but I am trying to locate as much information as possible relative to post-lymph-node-dissection pain syndrome.  I had two lumpectomy surgeries, one in October and a re-excision in December.  Along with the initial lumpectomy, I also had a sentinel node biopsy.  The surgeon removed three lymph nodes.  After the second surgery, I woke up in a lot of pain.  My cancer (DCIS, Stage 0, high grade) was located very close to my chest wall.  I also had six weeks of radiation. I have had numbness, tingling and burning on the underside of my right arm, beginning at the armpit.  The tingling has decreased, but I still have discomfort down the right side of my chest, my right shoulder, and my right shoulder blade - wierd stuff.  My arm pit is still numb and I expect it will remain that way.  About a week after I finished radiation, I experienced pretty bad pain that started in my back, under my right shoulder blade and then seemed to travel around my rib cage and under my breast.  I tried Motrin, per my radiation onc's direction but it didn't do squat.  She had me come in to the office and sent me for x-rays of my rib cage, which came back clear.  We thought it might be inflammation of the cartiledge in the rib cage, costochondrities, which I had many years ago, and she prescribed tylenol 3 with codeine., which I took for a few times and it seemed to help.  I hate taking pills, and I also have a fairly high pain threshold, which may or may not be a good thing.My surgeon told me some of the pain will probably be permanent.  I am lucky in that I don't let it impede my daily routine.  I have found, though, that the pain gets worse if I am in a car for a long period of time, even as a passenger.  I still get pain under my breast too that shoots around from the back.  I know, compared to other BRCA survivors, I am lucky.When I went in for my six month mammogram, I thought I was going to scream.  The tech was trying to capture the location where my cancer was.  Well, guess what?  Unless I could remove what's left of my breast and plop it down on the tray, there was no way that a mammogram was going to get an in-depth view.  I was called back into the room at least six times.  Finally, the radiologist ordered an ultrasound.  My breast is still pretty sore in that particular spot, but at least the ultrasound got results.  There is some fluid there that the doctor wants to keep an eye on, so I'll go back in six months for another ultrasound.  I see my surgeon again in two months and I will definitely make it clear to him that ultrasound is the only way to go with the affected breast.Hugs,Linda,  (dx. 2006, stereotactic biopsy 9/06; lumpectomy & sentinel node biopsy 10/06; re-excision 12/06; DCIS, stage 0 (comedo), nodes negative; hormone receptor neg.; radiation therapy (30 zaps). lafs54 Fri, 21 Sep 2007 00:00:00 GMT  On 9/21/2007 lafs54 wrote:Hi, I'm new to this board but I am trying to locate as much information as possible relative to post-lymph-node-dissection pain syndrome.  I had two lumpectomy surgeries, one in October and a re-excision in December.  Along with the initial lumpectomy, I also had a sentinel node biopsy.  The surgeon removed three lymph nodes.  After the second surgery, I woke up in a lot of pain.  My cancer (DCIS, Stage 0, high grade) was located very close to my chest wall.  I also had six weeks of radiation. I have had numbness, tingling and burning on the underside of my right arm, beginning at the armpit.  The tingling has decreased, but I still have discomfort down the right side of my chest, my right shoulder, and my right shoulder blade - wierd stuff.  My arm pit is still numb and I expect it will remain that way.  About a week after I finished radiation, I experienced pretty bad pain that started in my back, under my right shoulder blade and then seemed to travel around my rib cage and under my breast.  I tried Motrin, per my radiation onc's direction but it didn't do squat.  She had me come in to the office and sent me for x-rays of my rib cage, which came back clear.  We thought it might be inflammation of the cartiledge in the rib cage, costochondrities, which I had many years ago, and she prescribed tylenol 3 with codeine., which I took for a few times and it seemed to help.  I hate taking pills, and I also have a fairly high pain threshold, which may or may not be a good thing.My surgeon told me some of the pain will probably be permanent.  I am lucky in that I don't let it impede my daily routine.  I have found, though, that the pain gets worse if I am in a car for a long period of time, even as a passenger.  I still get pain under my breast too that shoots around from the back.  I know, compared to other BRCA survivors, I am lucky.When I went in for my six month mammogram, I thought I was going to scream.  The tech was trying to capture the location where my cancer was.  Well, guess what?  Unless I could remove what's left of my breast and plop it down on the tray, there was no way that a mammogram was going to get an in-depth view.  I was called back into the room at least six times.  Finally, the radiologist ordered an ultrasound.  My breast is still pretty sore in that particular spot, but at least the ultrasound got results.  There is some fluid there that the doctor wants to keep an eye on, so I'll go back in six months for another ultrasound.  I see my surgeon again in two months and I will definitely make it clear to him that ultrasound is the only way to go with the affected breast.Hugs,Linda,  (dx. 2006, stereotactic biopsy 9/06; lumpectomy & sentinel node biopsy 10/06; re-excision 12/06; DCIS, stage 0 (comedo), nodes negative; hormone receptor neg.; radiation therapy (30 zaps).Although I have not had the exact procedure as you, I too am suffering with chronic post-surgical pain (after a double-mastectomy and sentinel lymph node biopsy). It has been 9 months since my surgery and my pain is excruciating and intolerable without pain medicine. I take 60 mg MS Contin every 8 hrs, and 15 mg morphine every 2 hrs for "breakthrough" pain.  After consulting with a Neurologist this week, I am now also taking Nerurontin 300 mg once a day for one week, then 300 mg 2x/day for one week, then 300 mg 3x/day for ???  Hopefully that will help.The medication takes the edge off, but it is ever-present. Because of a recent development of lymphedema, I now am receiving Lymphatic Drainage Massage. The therapist also massages my scar tissue. This may also help alleviate the pain. I remain hopeful.I hope that you can find some relief for your pain.Best Wishes,~Leslie Leslie912 Sat, 22 Sep 2007 00:00:00 GMT  Have you tried gel ice packs?  They really do help.  My mom is about 75% better, in one year of massage morning and night in front of a mirror, watching her hand and telling her body, that "the breast is gone, stop hurting, it is gone", she uses Vit. E oil and Aloe Vera, and moves the scar tissue, not letting it attach and grow to the muscle.  She is also on Lyrica (the new Neurontin) and she thinks it helps her sleep.  Also ambien, 1/4-1/2 at night most nights, because the pain even at the level it is now, doesn't let her relax.  Has anyone tried a vibrator?  I suspect it may work even better.  Mom's vibrator is the kind with 2 big knobs on it, and she needs a little smooth one.  Let me know how you are doing.  Don't give up.  I really think there is an answer or several answers for this.  Laura Laurainutah Wed, 10 Oct 2007 00:00:00 GMT I would also like to hear more about your physiotherapist. I've been living with the bungee cord tightness and pain for 17 years--so the doctor who said it would go away didn't know what he was talking about. A plastic surgeon tried something called  a z-plasty which just made my scars messier. It was supposed to somehow loosen the tightness. Did nothing. The original surgeon obviously thought I was insane. My doctor kind of gave up. I find that Motrin gives me the most relief but I'm not supposed to take it because I had an ulcer 40 years ago. I have had more than enough of this debilitating condition. I would go through any surgery--if it had a hope of helping--and  would travel to see someone who could give me relief. Could you give me the name and location of your person and anything else you think might be relevant? Thanks so much. Ricamarin Sun, 28 Oct 2007 00:00:00 GMT Dear Pmpsros,I have a friend who has post mastectomy pain syndrome. Could you supply me with contact information (maybe an email) of your physiotherapist.thanks, lizgp lizgp Sun, 11 Nov 2007 00:00:00 GMT  On 3/21/2005 Lucy A. wrote:Linda, I am so sorry that I have just noticed your mail from March 2004 regarding Post Mastectomy Pain. And I am so sorry for your pain. I had my lumpectomies and mastectomy 3 years ago and I am sorry to tell you this but I still have the pain. At least 3-4 days a week I have pain under my arm pit and across my chest - burning and stabbing nerve pain.I have been told by MD that it will go away!! But when? And now no one will give me any pain meds. !!! I have been to a pain center and they want to try me on neurontin which is used for patients with other nerve pain conditions but I am afraid of the side effects.I am thinking of trying acupuncture next. There is very little out there about the syndrome. Good luck with your search for relief. Lucy New York Linda. It is now 2008 and I still have this horrible pain, They put me on Gabapentin and amatriplin about a month ago. Not many problems from this medication. Bad pain a few weeks ago and they changed my doze of Gabapentin and I got a alergic reaction to it so they changed the doze again. I am having sharp quick like electric pains in my arm pit today, so in between the Gabapentin I am taking a Tylenol and it is helping.  Thank GOD, How are you doing? Any new medication for you? I hope you are pain free by now...Let me know..Jeannine Jterpen760 Tue, 01 Apr 2008 00:00:00 GMT  On 3/15/2004 Linda D. wrote:Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D.I am a 36 year old women that is now 3 weeks post op mastectomy.  I have complained of burning since day one of my surgery and my surgeon only says to me "you shouldn't be feeling anything".  I haven't spoke of it again and just thought it is all in my head.  I know you all are further into your healing then I am but, thank you for not making me feel I am not alone.  Today has been my worst so far and I am afraid to take more meds but the pain is from the middle of my chest all the way to my elbow, cloths hurt when they rub against my arm, arm pit is very swollen and I just do not know what to do.  I am a single mom of two beautiful teenage boys that just do not know how to help their mom.  I have always been their strength and I sure have been having a hard time keeping a strong face around them. please...if someone has any advice please help Tonyainalaska Sat, 19 Apr 2008 00:00:00 GMT Tonya,I am so sorry you are having this as well as the rest of us. You need to find a lymph massage therapist for the swelling. I ocassionally get lymphodema and it adds to the pain. I had a mastectomy 8 years ago.Forget about the brave face with your sons. Let them help you in any way they can. They will love to do it for you! My son did. Again, if anyone can handle marijuana...it's the only thing that really works. I can't do it as I get paranoid. But, for twenty minutes, I had no pain whatsoever.Blessings,Lynn Objoyfulvt Mon, 14 Jul 2008 00:00:00 GMT  On 8/29/2006 Pam Anonymous wrote:I have had this post mastectomy pain syndrome for about a year and a half. The most helpful thing I have found is the lidoderm patches. They help a lot during the day. At night I don't wear them and I have started back on neurontin recently though I don't much like it. It does fuzz out the pain some though and consequently helps with sleeping. I am trying myofascial release. I have only had two appointments to date. If anyone has had anything more specific or any particular luck, good or bad, with this myofascial release, I would be interested in hearing about it. this is a big drag and not well publicized. I think it should be. If anyone is interested in being interviewed for an article, please say so here so that we can be in touch. Sincerely, Pam Anonymous One person mentioned that she had just started having myofacial massage done.  How has that worked for you? Sandy50 Sun, 27 Jul 2008 00:00:00 GMT Hi Everyone!  I just found this site today, so please bare with me.  I've had pain since the mastectomy in april 2006.  We have tried the gabapentin, to no avail.  I've tried topomax (don't do it - makes you crazy) tramadol, ugh! and most recent was tagretol.  Sorry about spelling, I'm not a nurse, nor can I spell.  Tegreatol has to be monitored so you don't get liver damage, and that must have been a worry to my Pain Dr hashe took me off it.  Plus wewanted to see it it was helping, and quess it was.  Now I'm on to try (use) Lyrica, 75mg/2 a day.  and since I whined so much this week about pain, Dr has prescribed Baclofen, but I need to research this before I'll swallow.I was in OT for months, having myofacia release done, twice a week.  and after the sessions I'd feel good, but did it help overall?  after this week, I would say I'm back to where I started.  My health ins co won't pay for any more OT.  My local OT person was fabulous and gave me 6 more weeks as pro-bono.   On my bright side - I now know I'm not alone.  Thanks for posting and keeping this thread alive. KnitLady58 Wed, 20 Aug 2008 00:00:00 GMT