Lymphedea from bp

EricaMary--I'm so sorry you joined the "sisters of swell"--the initial days involve a step learning curve and a lot of emotional adaption.

Your LE therapist should be educating you, but having taken an LE therapist class, it's not taught, and the quality of therapists are variable.

Resources that will help you:

the National Lymphedema Network has position papers on exercise and therapy for Lymphedema:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

The treatment should be geared toward making you self-sufficient in home care, and should include self lymphatic manual drainage massage, therapeutic exercises (Nitocris has posted a ton of them on this forum), learning how to wrap--to reduce volume and handle flares and if you swell at night, and getting WELL FITTING compression garments to use as appropriate.

Truncal swelling is so common and requires a lot of experimenting to get good truncal compression where you need it: here's the page on stepup-speakout

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Exercise is very helpful for us in general for our LE in specific, it just needs to be tailored to the individual, and involves "start low, go slow". There are protocols for weight lifting for women with LE--specifically the PAL protocol--on the exercise thread women are super active.

With your therapist just doing massage/MLD, and not educating you, she's not meeting your needs. You might want to check out her credentials, and also, let her know that you need to transition to "maintenance" and education is crucial

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

LE is doable, but support and good information are crucial, and we're here, and vent away--we need to.

Kira

EricaMary, I was so panicked and upset when my lymphedema reared its ugly little head for the first time.  It was absolutely devastating.  Finding a good lymphedema therapist is absolutely key.  My docs seem to know more than the average mentioned on this board, but at this point I know more about it than they do (and I am no Kira or Binney).  Getting a second opinion from an out-of-network lymphedema therapist really helped me at one point.  

I still would much, much, much rather not have it at all.  But it's not all hopeless for exercise.  Some of us are able to work up to doing really quite a lot by starting low going slow. 

EM - your posts are coming through just fine.  Can you ask the fitter to return the ill-fitting garments? I'm sure they'll give you a hard time about it, but you simply cannot wear it or use it.  About your swelling - yes, it will go down over time.  You need to elevate it as often as possible right now, as you are in a flare.  I have LE in an arm and that whole quadrant - side, armpit, back, upper back neck.  It is uncomfortable and when I have a flare, I am one big crank!! I think too much swelling is just a lot of extra fluid hanging around.  You will need to find someone to show you how to wrap.  In my experience, each person wraps differently, so seeing a couple people is not a bad idea.  The point is to provide gentle compression after doing self-massage, mostly during the night.  During a flare, you may need to do compression day and night.  I saw my best results after I learned to start the whole MLD clearing process with my lower abdomen first - getting those deeper nodes going, making room for the rest of the nodes.  There are videos online or some you can purchase in order to learn the "moves" - all done slow and gently with very little pressure.  I do use more pressure on my  lower abdomen, but aside from that, the rest of the areas are the same pressure as "petting a kitty", as my LE therapist says.  Take a big breath, stay on track, continue to read and to ask your questions.  You will be OK, and you'll find ways to work through this. You've got a very good team here.

Ericamary, tell the scheduler that it is ILLEGAL for a medical facility to insist you use one therapist instead of one you prefer - no medical personnel can treat you without your permission. It's called assault.

OK, so I don't know if they can then say that you have to go elsewhere but he might not know that either. So just keep insisting. It might even work.

Leah

Ericamary, you're not still using the ill-fitting garments, right? Don't!

Let's take this one step at a time.

First, what you can do RIGHT NOW for your arm is to elevate it as much as possible, with support. Don't just hold it up in the air, but rest it -- on the back of the couch when you're watching TV or reading, or on a pillow at night, or on the back of the seat when you're riding in the car. It needs to be elevated and relaxed. It's really important to stay very well hydrated -- keep water beside you and drink it frequently. Whenever you think about it, pause in whatever you're up to and do some deep, abdominal breathing. Those three things alone should help bring down the swelling in your arm and wrist.

Garments for the trip: If you can get this fitter to do her job adequately, then you're all set (though you may still need to elevate your arm at night, especially when you're traveling). If not, take yourself to a sports store or Target and get a long-sleeved sport shirt (like an UnderArmour) in a size smaller than you'd normally wear, and turn it inside out so the seams don't irritate your skin. For your hand, get Isotoner therapeutic gloves, which are inexpensive and can help control swelling temporarily until you can square away the rest of your treatment mess.

Getting your tone and activity level back: Don't sweat this right now. You really will get all this lymphedema stuff squared away at some point, and then you can build back up to your former activity level. It isn't going to take forever (even though it feels that way right now!), so you definitely have that to look forward to.

Decent lymphedema treatment: Many (way too many!) of us have had to fight to get good therapy. It's not ideal to have this much trouble getting help, obviously, but once you work out the details of getting good care you really will get your life back again. I am truly sorry you are struggling with your providers. The therapist you have is obviously not a good fit. But you're going to be all right! You can do this!

Here's a thought: can you get your name on the waiting list for the therapist you want to see? That way, when you get back from your trip you'll be ready to start over and get the help you need.

To answer your question about whether it's okay not to do a therapy intensive at your stage (wrapped arm and all), that really might be true. The 2 cm thing is bunkum, so don't worry about that. The current thinking on early treatment is that wearing a WELL-FITTING sleeve and hand protection may be all that's needed at this stage. If not, you'll know it as you move forward and can get further treatment. And on the other hand, you need and deserve a second opinion, so stick to your guns and arrange to see another therapist for an evaluation (this is not an emergency, but don't let them put you off either).

You mention some redness. This should fade if you elevate, hydrate and deep-breathe. If it doesn't, or if the redness spreads, what you need to know is that a skin infection called cellulitis is a possibility for those of us with lymphedema. It IS an emergency, so if you notice spreading redness, new swelling, warmth to the touch, pain, fever or flu-like symptoms, get help from your doctor or the ER at once.

Have you looked over the information about proper fit of lymphedema garments? It's here:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Do keep us posted! Gentle hugs,
Binney

She has LE and lives possibly near to you. Her LE therapist left, but she may know a good therapist near you.



Personally, I'd switch to the other PT, and if anyone gives you grief,go to the administration, ask if they want to be known as the place that upsets and poorly treats breast cancer survivors?



The squeaky wheel and all, but the most important thing is that you get good care.



I'm recently trained as a LE therapist.



We all want to be good patients,but sometimes you need to make a fuss to get what you need, IMO

I wrote this long post a while back, to answer some questions from women at risk of LE. So some of the comments talk about avoiding  LE, but the information is just as valid for those of us who already have an LE diagnosis and want to build strength safely.

Guidelines for cautious resistance training--designed especially to address LE risk--were developed as a product of an 18-month research trial called the PAL Trial (for Physical Activity and Lymphedema).

Here are some highlights, and I do recommend that you read the related journal articles--I'll put links at the end here.

--Start with very, very light weights and move up very, very slowly.  I was lifting extensive weight prior to surgery, but when I returned to the gym afterward, I started with one pound dumbbells for my arms and other upper-body lifts.  Talk about feeling silly...but LE is nothing to fool around with, so I gritted my teeth and decided who the heck cares what it looks like.  Then I added weight slowly, meaning one pound per week, initially.

--Use dumbbells or other weights that are marked on them.  Items such as soup cans are handy, but their weights are not standard, so they make it very difficult to know for sure you're adding to your lift load in small, measured increments.  Also, for best form (and form matters, to avoid injuries, LE-related and otherwise), it's best to use dumbbells, for a better grip.  One option is to purchase a set of power blocks that go as low as 1 lb.  If you google it, you'll see what I'm talking about.  That's what they're using in follow-up research being done by the PAL Trial researchers now.

--Resistance bands are not a safe way to do strength training if you have or are at risk of LE, because you cannot know exactly how much resistance you add or subtract when you alter your hand placement or move to a more resistant band.  One key tenet of the PAL Protocol is that they determined that women have the least chance of triggering LE (or making it worse if they already have it) when weight is added slowly and progressively, in small measured increments.  Resistance bands are tempting because they're inexpensive and easy to store, and if you travel, they go right along with you.  But--they invite more LE risk than relying on measured increments from dumbbells.

--And then there are those body-weight exercises, like planks for our abs and pushups for the pectoralis area.  By now you can predict what I'm going to say--not such a good idea for us, because--you guessed it--impossible to say how much added resistance you get when you alter your position to make the move harder. 

--This is not to say you NEVER use resistance bands or do push-ups, and even Dr. Katie Schmitz, the lead PAL researcher, has said it's possible...eventually.  The idea is to build significant strength using the (broken record here, sorry) slow, progressive method with dumbbells.  Then--and seriously only when you have a good long track record of adding your weights slowly--might you begin to add some bodyweight work--and that only if all through your program so far, you never triggered any LE symptoms (ache, heaviness, tingly, and of course, swelling).

--Then there's the question of wearing compression while working out.  Anyone who already has LE should be wearing a compression sleeve and hand compression (glove or gauntlet) while lifting weights, and probably while doing cardio work, too (because just raising your core body temp during cardio adds load to the lymphatic system, and then you add to the challenge by using arms for long, repetitive motion in some kinds of cardio work).  The National Lymphedema Network says that whether to wear compression or not is a judgment call when you do not have LE--but are 'just' at risk (oh, and risk after SNB is not trivial--up to 17% for arm LE and much, much higher for breast LE if you had SNB and breast-conserving surgery, and especially if rads are thrown in).  To make that decision, it's best to consult with a qualified LE therapist, generally a PT who is also a certified LE therapist, hopefully with the letters LANA after his/her name.

(I'm killing you with info here, I know, but LE rots and we do what we can to avoid it, or to minimize flare-ups when we do have it.)

It's a great idea to work out with a certified personal trainer at least a few times, and a trainer can request the actual PAL workout guidelines by going online here: 

http://www.penncancer.org/physical-activity-and-lymphedema/receive-pal-intervention-materials/

I live in a rural part of w. Michigan and am nowhere near any gyms that offered PAL-compliant personal training, so I recruited support from two hospitals and brought one of the PAL researchers to town last December, for a one-day workshop she gave to a group of personal trainers and LE therapists. So now we have some good PAL training resources here.  You could do that too, and if interested, I can get you started on how to make it happen.

To read the original PAL report explaining how strength training guidelines were developed for breast cancer survivors who have lymphedema:

http://www.lymphnet.org/pdfDocs/PAL_NEJM.pdf .

Then there is the PAL-Trial evaluation of weight-lifting risks to women at risk of lymphedema,  available at: jama.ama-assn.org/content/earl...

Lead researcher Kathryn Schmitz wrote an article clarifying misconceptions about the PAL Trial results, which were poorly reported in the media when the study was released:

http://www.lymphnet.org/pdfDocs/Weight_LE_Misconception.pdf

The Livestrong program is great, definitely designed for cancer survivors, but their trainers get only a little background in the PAL guidelines.  So at minimum, I hope you'll read the resources I linked here, so you'll know what to ask about and when to object if an unwitting trainer suggests a move that's not really good for you.

Do lift...but do lift intelligently!  40% of us will get LE after BC treatment, and the risk is particularly high during the 3 years post-treatment.  Some lucky women in the 60% club can lift, push, pull, do pushups and yank on resistance bands and never get LE.  No one knows why some get it, some don't.  You cannot know if you're in the 40% or the 60%, but being careful to do smart weightlifting could help nudge you away from the group that gets this crazy condition.

Wishing you only the best--

Carol