Lymphedema and pain

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???

(By the way Mazza left a scar in my heart too,I am praying for everybody a long ,happy ,healthy life)

Thanks alot...for all the help.

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 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.

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

[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

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

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.

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 !!

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...

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

Sorry to bother you and thanks for the quick reply.....may be u understand

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.

I agree with Kaye...the last one sounds like its more on topic with what you will need.

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.

Thanks a lot...
and good job in the walk

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.

Hi All, the gold standard treatment for lymphedema recommended by the National Lymphedema Network is complete/combined decongestive therapy which consists of manual lymph drainage, skin care, special exercises to promote lymph flow, and compression. The bodywork feels like a massage but it's a special technique designed to promote lymph flow in the affected areas. Diuretics are NOT recommended for long term use for lymphedema. If lymphedema is the only reason someone is taking diuretics, they are hurting themselves as the meds push out the water part of the fluid but not the debris (waste, cells, proteins, germs, bacteria, ect). Lymphedema can and does cause severe pain. Anyone who would like more info on lymphedema can check my profile and visit my website Lymphland.com where we also have a button to join the Lymphland International Lymphedema Online (LILO) support group.

Tina Budde

That is great information you put in here, Tina, thank you. How many of the health institutions do work this way do you think?

Hi Hamsa, not too many unfortunately. Doctors are just so not educated on lymphatics. Hopefully that will change. I have started at ELymphNotes as the content editor, that's the only online lymphedema magazine and we are trying to get more doctors involved. In Feb the new issue will be out and we will be having a forum discussion on a few very interesting topics, will post when the new issue is up and running.

It is sad not too many doctors are into it It seems a very important part of the recuperation process

Happy Lymphedema Day! Today is Lymphedema day, I saw it online. I am very greatful they are learning more about this. When I was young they told me to take a water pill and it didnt help. Thanks to friends now we can learn how to live with lymphedema. Also thanks to my friend Tina who work hard to help fight for Lymphedema online. Debbie

It was? Lymphedema Day I mean. I didn't know that Thumbs up for all helping to create more awareness {Feel-good-000200BB}

Dear Friends, I have been fighting the medical field to get some help and have lost it a couple times! I was having trouble breathing, My lymphedema up and my nurse told me to wait. Then I turn around and fight for my lymphedema garments. I am tired of fighting. I got on-line and a line I have been on since 2005 put me down really bad. I dont go online alot after that. I love helping people and letting them know I have walked in their shoes, But Im needing a booster shot! Thanks for your ear! Luv, Debbie

Debbie what do you mean with 'online'?

My thoughts are with you You know you crawl out of every pit again because you are strong and won't let anything get you down.

Hamsa wrote:

Debbie what do you mean with 'online'?

My thoughts are with you :) You know you crawl out of every pit again because you are strong and won't let anything get you down.

I have been on line with another group since 2005 Right while I was doing high chemo and we had some people join that put down others alot and stay thats stupid! I just wrote a little note to see what would happen. I love your groups Why do we have a group? To be better then the others in it or to walk with them. To judge them or love them. Remember you are walking in the same shoes they are, So what would you want them to say to you? Take care Debbie

Oh Debbie, that is disgusting You actually mean patients insulting other patients online?

Well, don't go there anymore - you don't need that at all, if anything you need something to make you feel better. Not worse.

Dear Hamsa, I wrote a lady on-line thats been a good friend and told her and she wrote a note online and alot of people had been seeing that going on. They hope that the person would stay and agreed we are not to judge each others email. I don't know yet what I want to do. Have a light fever and very swollen. Going to lay down awhile,Be back later. Thanks for your support. Tinas that was online with us, Her dad had a stroke I heard. Will check on her line. Thanks again Debbie

Debbie, you first have to look after yourself. This forum thing is a forum and can be helpful but soon as it turns out to be anything else but helpful you should drop it. I hope you will be feeling better soon. Your HEALTH is the main thing you have to look after - it is the most important thing. Feel well, Debbie and take care