Topic: Lymphedea from bp

Jul 4, 2012 11:39 AM kira wrote:

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:

www.lymphnet.org/lymphedemaFAQ...

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

www.stepup-speakout.org/breast...

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

www.stepup-speakout.org/Findin...

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

Kira

Jul 4, 2012 03:28 PM Outfield wrote:

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. 

Jul 12, 2012 09:31 PM Ericamary wrote:

I was mordified this happened to you also. Thanks for your response and support.  I am just so overwhelmed with this.

Jul 12, 2012 09:48 PM Ericamary wrote:

Hi, i am at my wits end. The quality of care at my local hospital sucks. I am told how lucky i am to be given appts. It has been pretty much a waste of time and money.  I have been handed a dvd, handouts and showed how to to massage. I have seen no change in my swelling, and told i will not. I am only stage 1. BUT i want to keep it there.  My therapist tries hard, and is the 2nd best there. I just don't click with her. I BEGGED TO switch and was told i can not. I am really ready to just give up.   My husband thinks i am making a big deal out of nothing. Ok, so i FINALLY get my glove and sleeve from the "fitter" who comes in once a week. She screwed up and forgot my stuff last week. SO i waited 3 weeks for my glove and sleeve. I wear it today after getting and told her it was painful. BUT was told this was cause i wasn't used to it. I wore it 8 hours today and was in constant pain. I took off a few minutes ago and have a bruise on the inside of my arm over the veins, where  your arm bends. PLUS I NOW have swelling at my wrist which i NEVER had before. I contacted the fitter by email and she assured me she fit me correctly. For onething, i questioned why i was given a size long sleeve when i am only five feet and tiny?  Sounded like that is what she had in stock to me. These are NOT custom but off the counter. Next week she said she'll refit me.  Great another 2 weeks to wait.  Will my wrist go down or now i have to live with this? Is this cause if was fitted wrong??? I am at a loss and just want to give up.

Jul 12, 2012 09:57 PM Ericamary wrote:

Hi, so i don't have to repeat  myself and bore anyone please see my other answers.  I haven't been taught to wrap at night or wear anything at night cause i am at Stage 1. This is what i have been told??? Is that true. Anyway, i am so flustered and ready to just give up which i never felt fighting my cancer. I just am having a difficult time. My wrist swelled from my sleeve and glove i got today. SO i think it means it didn't fit right. NOW how do i get the swelling to go way?? I've been going now 2 weeks daily to a therapist and i only had minor swelling, but it was there!! Now i have the wrist swelling. 

I just don't know what to do. The fitter is the biggest jerk, i am putting it mildly. It took her 3 weeks to get me the glove and sleeve.  She insists she fit me correctly. As i said in another post reply. i was in pain wearing the sleeve and glove today. It was terrible. I was told it was i wasn't used to wearing them. BUT i had a bruise on my skin inside where the arm where the veins are. It was so tight, as well as the wrist and hand. My fingers were turning purple all day and my wrist hurt.  I was so shocked when i took the glove off and so swelling on the side of my wrist.I feel like i am being tortured.

Jul 12, 2012 10:19 PM kcshreve wrote:

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.

Jul 13, 2012 08:47 AM Ericamary wrote:

Thanks to both above for your response. I am SO DEPRESSED. I can't focus on anything else, i am just getting worse after 2 weeks and lots of lost money to terrible people!! The fitter is a royal "b____". She is making me wait a week for a new garment.  The therapist wouldn't show me how to wrap, says you don't do that in stage 1. Thanks for your support. I am worse after 2 weeks with these quacks. I just am at a loss. I am going to beg the sched. at the hospital for a different therapist. BUT he is pretty adamant about not letting me change. This is the only local place to go in my area. I can't go far, due to driving my kids to and from camp.

Today is actually my last therapy appt. I have a video and was taught how to do massage. BUT the therapist taught me wrong stuff, i saw in the pictured handouts and video she gave me. 

OH, the glove was overlapping the sleeve. The therapist and the fitter disagreed on where the sleeve should end on my wrist. I am so upset after wearing that the wrist is so swollen, which NEVER was before. I feel like a freak.

Jul 13, 2012 09:15 AM Leah_S wrote:

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

Jul 13, 2012 07:10 PM, edited Jul 13, 2012 07:11 PM by Ericamary

Hello again and thanks for the responses.  I went to the center today and begged the sched. to give me a different therapist. The one i wanted is a PT and is Lana trained on found on the NLN site. BUT AGAIN I WAS TOLD NO. I told the person i came there 2 weeks ago for therapy and am worse off now and today was to be my last day as my therapist had decided. I told him i had no idea how to manage this lymphedema myself, yet, and told him about the fitting not working after 3 weeks,now going on 4 weeks waiting for the sleeve and glove for  proper fit. The fitter emailed me last night and is meeting me again in 6 days to try to refit. She claimed that she fit me correctly and it fit before i left the hospital center yesterday. My therapist was talked talked to by the scheduler and she isn't thrilled with me. I told her i am just so anxious and worried. She said i am only stage 1 and making a huge deal over my problem. This is only an inconvience at this time. I ONLY have to take precautions, do mld massage, which she is teaching me and gave me a video. She also gave me handouts on exercises, stretches, ect., AFTER i get my sleeve. I told her to please NOT release me until i get a proper fitting sleeve and i can be on my own. She claims i had 2 weeks of therapy all ready and really didn't need that much. WELL she remeasured me and i am now bigger then i was and more swollen from the poor fitted sleeve and glove. She looked at it on me, and underneath the front elbow where the veins were, i am red rash and very sore, swollen and now my wrist is very swollen on one side. She claims that it should go down, just from the tight glove??   I hope she is right. I feel worse then i did 2 weeks ago. Anyway, she doesn't offer information, like pulling teeth, she just said to come in monday again for therapy and we'll see what happens. She said she'll be there when i am refitted next thurs. and she'll talk to the fitter before hand.  I am so flustered and confused. She told me just to relax and the glove and sleeve are really only for when i do things strenous with my arm and hand? 

Is this all true. SInce i am only stage 1 and guidelines say that you have to be 2cm larger then the other arm, that i don't have to worry? Am i expaining this correctly? Meanwhile, i hope it's ok, but we are paying for a cruise we are planning in a few weeks, we are driving to the port, since i don't want to fly. Will i be ok? even if i didn't have a sleeve in the middle of the ocean? I hope to have the sleeve by then. 

Also, told i couldn't switch therapists, cause she is an OT, not a PT, like i wanted. PLUS, they have no openings, i would be on a waiting list and also need another order from the dr. and another reevaluation PLUS insurance has to ok it. He said it would be difficult to do and I need to finish with this therapist.  

Jul 13, 2012 07:17 PM Ericamary wrote:

thanks!

Jul 13, 2012 07:29 PM Ericamary wrote:

My glove was just a size 1 xs (1 compression, Jobst) LONG, which i felt was all they had in stock?? I am 5 feet tall, but not that tiny, since my car accident 3 months ago, gained 13 pounds which is alot for me! I went from a size 4 to an 8.  I am short but beefy?? I was weight lifting up until 3 months ago and i have become sagging now, lose almost all the tone,  I am also probably not as young as most of you, LOL!! I look like i am in my 40s but am actually in my mid 50s. I am very active, bike riding, swimming, running ect. until recently. I used to go to the gym 6 days a week. BUT i couldn't work out for almost 3 months due to my car accident, I was hit by a kid texting. Since my cancer/mast. i worked on not having old lady arms. Well, i am losing all the tone now. All i hear from everyone about lympdema is "you are lucky" you are alive. 

Jul 13, 2012 08:10 PM, edited Jul 13, 2012 08:14 PM by Binney4

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:
www.stepup-speakout.org/proper...

Do keep us posted! Gentle hugs,
Binney

Jul 14, 2012 03:23 PM, edited Jul 14, 2012 03:25 PM by Ericamary

Thanks to all of you for your answers. I am getting a little less tense. I'll try the things mentioned. I asked my therapist about wearing underarmour and she told me it was good when exercising and i didn't need that yet.  I agree a good fit sleeve will help. My therapist claims i'll figure out myself??? what works and doesn't.  I am very set in my ways and this is an adjustment. I am drinking fluid, keeping elevated, still jogging, walking, swimming lots of driving my kids places  and not lifting anything i don't have to do. I hope my fitter will be able to help me next Thurs. It just is also stressful, cause she is not a very nice person to deal with!!! She claims that i need to be refit and measured every 6 months, but unless she makes a wonderful turnaround and helps me next Thurs. and is actually nice to me. She isn't getting my business ever again!!  She even told me, i couldn't beleive it, how terrible this disease is and she wouldn't be happy either to have this, she would rather deal with cancer. Will that was depressing. She is a very self absorbed person. This company comes to our local hopsital as a courtesy.  The therapists didn't even know where to tell me to go buy stuff except her. This is so scarly since this hospital center and rehab has an incredible rating and rep.   I'll keep the website you gave me and yes i have read the site about the fit, It looked like it fit?? But was so uncomfortable. I had no problem understanding how to put it on and wear it, it just was too tight.  I understand now that it hopefully will not get worse if i am careful until i get the proper fitting. BUT it is going on a month now since i got the script to get the sleeve and glove. I just want it resolved. I am doing the mld from the video. The therapist is seeing me again next week on Monday. The swelling on the wrist has gone down from the tight glove maybe just a ltad, not much change. My understanding is it should go back to normal???

After i finish with this therapist, i will try to manage on my own and with all of you! THANKS SO MUCH.   I have a check up with my internist in Sept. If i still need more therapy, i'll have to get a script from him anyway. Then i can get on a wait list for the Lana trained therapist. She has been working 6 yrs and all the patients seem to love her. She is also a PT instead of an OT, do not know if this matters. But I know at this pt. the hospital will never let me switch. I just expect so much, i am used to having such incredible care, like i did when i had breast cancer and a diep flap. I went to a teaching hospital in baltimore.  I couldn't say enough good things about my drs. and care there.  They were also so caring and kind. But most have moved on. I had called my cancer dr. there and asked what to do about the LE and her office never even returned my calls. 

Jul 14, 2012 06:04 PM kira wrote:

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

Jul 14, 2012 07:05 PM carol57 wrote:

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: 

www.penncancer.org/physical-ac...

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:

www.lymphnet.org/pdfDocs/PAL_N... .

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:

www.lymphnet.org/pdfDocs/Weigh...

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