Medical Forum / Diseases and Disorders / Breast Cancer / November 2003
Lymphedema and pain
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aa - 12 Nov 2003 17:16 GMT Dear all Hope all of you are doing great. My mother has developed lymphedema,and she has very severe pain.(I think the pain is partly related to edema) Please guide me again,how to cope with the pain,which is very bad in the shoulder and then the whole arm. what are the exercises she should do to relieve the pain and edema.? how to do the massage ?and for how much time? is it safe to take large amount of pain killers? (she is always worried that somehow pain killers will make problems for her kidneys ) There is no place for pain management...can somebody please assist ,in managing the worst kind of shoulder pain? If somebody had gone through the same kind of situation,can you please share with me??? Thanks
Saima (By the way Mazza left a scar in my heart too,I am praying for everybody a long ,happy ,healthy life)
Tim Jackson - 13 Nov 2003 18:19 GMT > Dear all > Hope all of you are doing great. [quoted text clipped - 10 lines] > If somebody had gone through the same kind of situation,can you please share > with me??? Regarding massage there are quite a few Internet resources about care for lymphedema patients, for example this UK one, which includes self-massage instructions. http://www.cancerbacup.org.uk/info/lymphoedema.htm This document relates to all sorts of lymphedema, not just breast-related, so you have to pick out the relevant bits.
Regarding pain-killers, there are different sorts of pain-killers, with different side effects. I know something about the heavy-duty opiate pain-killers used when cancer has spread to the bone, but I'm not sure about treating this sort of pain. I would imagine one might use anti-inflammatories like Ibuprofen. The main side effect of these is stomach acidity, which can be combated to some extent by prescribing antacids. I'm not a doctor and I can't prescribe drugs for your mother, you really need a doctor to do that.
It sounds like her pain is rather more than is normally related with lymphedema, has a doctor examined her shoulder since her surgery? Has she had any X-rays or scans of it? I think a doctor would need to know more about the nature of the pain before prescribing drugs.
Tim Jackson
aa - 13 Nov 2003 21:15 GMT Sorry to bother you and thanks for the quick reply.....may be u understand the frustration ,very helpless kind of situation for me,but the good news is that ,in coming 2 months she is visiting us here in usa. I know docs did the scan and x-ray very recently,which was ok. What I can do is ask questions,search and send anything which may soothe her a bit..so please dont mind any of my post....just forgive. thanks again saima
> > Dear all > > Hope all of you are doing great. [quoted text clipped - 36 lines] > > Tim Jackson Tony Lima - 13 Nov 2003 23:48 GMT >Dear all >Hope all of you are doing great. [quoted text clipped - 15 lines] >(By the way Mazza left a scar in my heart too,I am praying for everybody a >long ,happy ,healthy life) Your mom should be taking a diuretic. My wife takes hydrochlorothiazide (just checked the bottle, can't believe I spelled that correctly). It will help the edema but won't do much for the underlying lymphedema.
As Tim said, there are special massage techniques that can reduce this problem. There are also elastic sleeves that help prevent the problem from developing.
Good luck. - Tony
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bell-lady - 14 Nov 2003 03:45 GMT YMMV, but... I don't believe that the sleeves will do much until you get the size down thru massage. Suggest she go to physical thereapist who is trained in lymphedema massage/management (a specialty). We have one in our hospital in this little burg in Central PA, should be one in most medium cities. It is a wonderful massage, and it really isn't long until you can learn to do it yourself, and most of the pain goes away when the swelling goes down with massage. The shoulder also hurts because of the extra weight it is supporting, and from the scar tissue etc. from surgery, probably.
After weeks or more of daily massages (not just massage like in a parlor, but particular, light touch move-the-fluid-towards-the-collarbones massage; lymph moves in the skin level, not deep down in; move the surface of the skin upward, fluid moves upward), and wrapping the arm with something like ACE bandages, but softer and firmer, not so stretchy, it WILL go down. Then you should get a sleeve and glove that fits at the arm's smallest, to maintain that smaller size against the urge for it to swell with gravity, heat, overexercise and other stimulants.
Theres a variety of experience here, different sleeves, techniques etc. but most are based on learning the massage, and wrapping at night to hold the size down, and using sleeves during daylight hours to keep the size down, and sort of emulate the massage slightly as the arm moves at work, etc.
Hope I remembered most of that right.
The pain can very well be due to lymphedema alone, the swelling can be several pounds - I calculated mine at 5+ lbs of waste material not moving up my arm! Ycch... massage made it feel SO much better. It just doesn't last long, and you need the wraps or sleeves or both to help keep it from becoming as uncomfortable again. MInes over 1 year old now, and sleeves aren't necessary any more, it is still slightly swollen and only gets big when its hot, or I don't move around enough. I massage it out of habit, without even thinking, when it hurts, and it goes away. You learn stretching exercises to help keep fluid moving too.
Hope some of that makes sense - glad to hear she's coming to US, it's easier to help someone who's near you!
Best wishes, Ann in PA
Tony Lima - 14 Nov 2003 16:53 GMT >YMMV, but... >I don't believe that the sleeves will do much until you get the size down >thru massage. Suggest she go to physical thereapist who is trained in >lymphedema massage/management (a specialty). We have one in our hospital in >this little burg in Central PA, should be one in most medium cities. It is a [excellent advice snipped]
You are, of course, correct in all respects (as far as I can remember). I got a short lesson in lymphedema massage when my wife was being fitted for a custom sleeve. It is indeed quite different from anything else. I strongly recommend finding a therapist with specialized training and experience. - Tony
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aa - 14 Nov 2003 17:09 GMT > I don't believe that the sleeves will do much until you get the size down > thru massage. Is there any web site which tells the technique of massage??? since there is no such facility,she can learn it through net !! Thank u so much for the reply,I really appreciate. saima
> YMMV, but... > I don't believe that the sleeves will do much until you get the size down [quoted text clipped - 37 lines] > Best wishes, > Ann in PA Kaye301 - 18 Nov 2003 17:14 GMT saima wrote << Is there any web site which tells the technique of massage??? since there is no such facility,she can learn it through net !! Thank u so much for the reply,I really appreciate.
There are videos on it, I believe, if I remember correctly--even videos on how to do the bandaging. I recall seeing them online in the past. Try doing a google search.
aa - 18 Nov 2003 23:58 GMT http://jovipak.homestead.com/videos.html please take a look,and advise me which one is better.
> saima wrote << Is there any web site which tells the technique of massage??? > since there is [quoted text clipped - 5 lines] > to do the bandaging. I recall seeing them online in the past. Try doing a > google search. Kaye301 - 18 Nov 2003 22:40 GMT saima wrote << please take a look,and advise me which one is better.>>
Of those 3 I believe the last one would be the one that would be most helpful: Self-Care for Post-Mastectomy LymphedemaRecommended Use: For the lymphedema patient and/or their loved ones ready to take on, or share, the commitment of ongoing maintenance . Features: An 83 minute step-by-step, comprehensive maintenance and prevention program for mastectomy patients and others "at risk" of developing lymphedema. Includes the etiology of lymphedema and detailed instructions for self-massage, bandaging and measuring progress. Price: $60.00 ORDER HERE
aa - 19 Nov 2003 01:24 GMT Thanks a lot... and good job in the walk :)
> saima wrote << please take a look,and advise me which one is better.>> > > Of those 3 I believe the last one would be the one that would be most helpful: > Self-Care for Post-Mastectomy LymphedemaRecommended Use: For the lymphedema
> patient and/or their loved ones ready to take on, or share, the commitment of > ongoing maintenance . > Features: An 83 minute step-by-step, comprehensive maintenance and prevention
> program for mastectomy patients and others "at risk" of developing lymphedema. > Includes the etiology of lymphedema and detailed instructions for self-massage, > bandaging and measuring progress. > Price: $60.00 ORDER HERE bell-lady - 19 Nov 2003 12:53 GMT I agree with Kaye...the last one sounds like its more on topic with what you will need.
Ann in PA
Kaye301 - 21 Nov 2003 11:43 GMT Thanks--was alot of fun, and just knowing I could do it gave me a sense of enpowerment that went beyond what I have ever felt--or at least have felt for a long time. In addition, I was able to raise over $3.500.00 for the Susan G. Komen foundation. Now I do hope they live up to their promises and the monies go to further b.c. research and that a cure or more optimal treatments which lead to long-term remission are found...
aa - 20 Nov 2003 19:25 GMT thanks Kaye...I am going to order that...do you have any other option in video?Please let me too...I can send her 2 of them...right !!
> saima wrote << please take a look,and advise me which one is better.>> > > Of those 3 I believe the last one would be the one that would be most helpful: > Self-Care for Post-Mastectomy LymphedemaRecommended Use: For the lymphedema
> patient and/or their loved ones ready to take on, or share, the commitment of > ongoing maintenance . > Features: An 83 minute step-by-step, comprehensive maintenance and prevention
> program for mastectomy patients and others "at risk" of developing lymphedema. > Includes the etiology of lymphedema and detailed instructions for self-massage, > bandaging and measuring progress. > Price: $60.00 ORDER HERE marvin - 14 Nov 2003 11:32 GMT > >Dear all > >Hope all of you are doing great. [quoted text clipped - 26 lines] > > Good luck. - Tony marvin - 14 Nov 2003 11:34 GMT > Your mom should be taking a diuretic. My wife takes > hydrochlorothiazide (just checked the bottle, can't believe [quoted text clipped - 6 lines] > > Good luck. - Tony sorry tony - it is the lemur of madagascar which is a monkey - pronounced lema - that's what was ringing in my memory ... had a pal called gibbon once which is another kind of monkey ... also met mr duck and mr chicken.
aa - 16 Nov 2003 23:49 GMT Thanks alot...for all the help.
> > Your mom should be taking a diuretic. My wife takes > > hydrochlorothiazide (just checked the bottle, can't believe [quoted text clipped - 10 lines] > lema - that's what was ringing in my memory ... had a pal called gibbon once > which is another kind of monkey ... also met mr duck and mr chicken.
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