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Medical Forum / Diseases and Disorders / Breast Cancer / November 2003

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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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