Apr 9, 2012 10:27AM Tina337 wrote:
Thank you, Becky. I am giving it a rest for now, as all the on/off friction was a bit much. Will try again in a little while. Makes sense to line up seam with seam on glove.
Lymphedema is swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema can appear in some people during the months or even years after treatment ends.
Lymphedema usually develops slowly, and you may feel an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling, and decreased flexibility in the hand, arm, chest, breast, or underarm areas. Tell your doctor if you experience any of these symptoms. Early treatment of lymphedema is important.
Learn more about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.
Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020
Posted on: Mar 7, 2012 05:32PM
Tina337 wrote:Let's use this thread to post the exercise and methods of self care we are practicing each day to keep our bodies strong and our LE at bay. After experiencing a flare in my arm when I hadn't been as diligent in caring for my truncal LE, I am motivated to begin exercising regularly, performing MLD daily, and wearing prescribed compression garments. Rather than fall down on the job and become overwhelmed by this chronic condition, I want to challenge myself to kick LE's butt into a small, manageable corner! I started today. Here's what I did.
Posts 331 - 360 (7,044 total)
Apr 9, 2012 10:27AM Tina337 wrote:
Thank you, Becky. I am giving it a rest for now, as all the on/off friction was a bit much. Will try again in a little while. Makes sense to line up seam with seam on glove.
Apr 9, 2012 04:46PM - edited Apr 9, 2012 04:48PM by Tina337
Holy, smokes!! My vest arrived, too!! Locked and loaded!
Edited: Okay, still fumbling with ammunition, so I guess I'm not completely "armed" yet.
Apr 9, 2012 09:39PM Tina337 wrote:Okay, I didn't try new sleeve again today, but I did try on Solaris vest. I think it fits really well. I had started to worry about therapist ordering longer length, that it might be too claustrophobic. However, it seems fine, better than some of the compression tanks around my tummy. It probably will be hotter though. I have to wash the vest before wearing, but will first have therapist check for fit on Thurs. I am crossing my fingers that when I try my sleeve tomorrow, that it fits right, too. Of course, if all these items fit just right, that must mean I will be jinxed on my second set!
Apr 10, 2012 04:03AM BeckySharp wrote:
Hey Tina--Glad all you armor is here. Now to get used to it. You sound more upbeat.
Yesterday walked out at dam--only 5 miles as I did not have time for more. Did get 13,000 steps in. I still do two MLD, MLD exercises, and weights every other day but have not been reporting it. It is just now part of my daily routine. My new norm--albeit a time consuming one!
Let's all be windshields and splat a lot of bugs today. The aggressive (killer) bees have arrived in my area so I need to hit some of them. We had them when I lived in Panama and I had a friend die from multiple stings so not happy to hear they are here.......
Apr 10, 2012 05:30AM - edited Apr 10, 2012 05:30AM by kira
So, on Sunday, my mother fell and broke her hip. The whole extended family lives in California, and called me all night long.
Yesterday, I called the Kaiser Hospital where she's at, and spoke to the sweet nurse at 6 am their time and then my mother when they allowed calls to the room.
My sisters and father couldn't "find" my mother--so I had to email them the contact info.
She'll have the surgery tomorrow. Then rehab.
I see a trip to California in my future.
I am walking, riding the exercise bike, and MLD--try for once a day.
It doesn't rain but it pours, huh?
Apr 10, 2012 05:48AM carol57 wrote:
Yikes, Kira, you have a lot more piling onto your daily platter! Exercise helps beat down stress, but you've got stress of a whole new level brewing here. You should commiserate with Tina, whose mother is also far away and dealing with similar issues. I saw a short piece on TV yesterday that said ours if the first generation that will care longer for our parents, than for our children. So much truth that that one! My own parents are in relatively good health, in their early 80s, and mercifully I can drive there in 5 hours. My heart goes out to you on the distance, and of course it's natural that extended family wants you included in care decisions. Good luck with all of this and with keeping your sanity and your LE in check throughout.
Apr 10, 2012 05:52AM carol57 wrote:
Tina, this all sounds very hopeful, and I'll bet that therapist appointment simply cannot come soon enough!
Becky, your routine is daunting. I'm in awe that you keep this up, with relatively few time-outs for things like family visits.
It's snowing here! I guess it will be an indoor-exercise day for me! Now I really regret not taking an hour to do outdoor cardio walking yesterday. Lesson learned: carpe diem when it's a nice diem!
Apr 10, 2012 06:15AM olearca wrote:
Awww, Kira, so sorry about your mom. Sounds like you are the "go to" person in your family and that can be so stressful - especially when there is a whole nation separating you between coasts. It does really all seem to come at once, right? Here's hoping her surgery goes smoothly and she is able to rehab quickly and without complication. And, more importantly, hoping you can stay sane and strong as a windshield!
Tina, the garments sound perfect in fit - and as Becky said, now time to get used to them. I keep wondering is there are custom garments in my near future.
Carol, Becky and Tina - and anyone else that does weight training - did you all train before LE? Do you weight train only with a trainer or do you do it independently? Do you all follow PAL protocol? I am dying to add in some weight training but have yet to find a trainer that has any knowledge of PAL - and I seem to be more informed which is fine, but I don't want to make a mistake. I know the trainers can get PAL certified but they have been hesitant to spend the money to do so. Is there a way I can do this and follow PAL at home?
Apr 10, 2012 06:49AM justmejanis wrote:
Kira I am so sorry to hear about your mom. I hope her surgery is successful and she has an easy recovery.
I 'graduated' from LE therapy yesterday. I read this thread and still feel I don't know as much as I should! I have not heard of most of the garments and fabrics you talk about. I asked my therapist yesterday and she did not indicate that I needed a vest. I have two sleeves and matching gauntlets, two surgical vests, and the big clunky arm sleeve for night sleeping. I feel like I am over my head when I read your posts. I have all the garments apparently that I will be needing. I love this thread but need to do more homework!
I hope everyone has a wonderful day!
Apr 10, 2012 07:15AM carol57 wrote:
Catherine, I lifted weights prior to my bmx/diep recon surgery, as a strategy to prepare for what I expected to be a full-body surgical assault. It worked--recovery was a relative breeze.
Fifteen years ago, I lifted regularly, doing so for several years until I injured my back, probably by moving a too-heavy weight plate that someone else inconsiderately left on a machine. I regretted losing my strength, but I was afraid to lift again for fear of re-injuring my back. Until last summer, when the greater fear of not being strong going into 12 hours of surgery motivated me back into a gym! But the injury fear prompted me to re-start with a trainer.
I am incredibly fortunate that the wonderful trainer I discovered doesn't charge much for his sessions, and this fellow turns out to have a huge heart. He gives me much more time than he charges for, and his coaching is simply wonderful. I cannot say enough in support of working with a trainer, but I do know that in most places, it's so expensive as to be out of reach. But even two or three sessions can get you safely started.
On the PAL question, I brought Cathy Bryan's PALS for Life workshop to our little town. We got seven people together to take the one-day workshop, and the trainers each paid her $299 for the day. (If they're charging $50/hour to train, this is not a big amount to pay for the PAL training!). Two hospitals and a local pharmaceutical manufacturer donated funds to cover Cathy's travel expenses, and to cater refreshments and lunch at the workshop. Cathy was on the PAL Trial research team--she supervised all the personal trainers working with the research participants--and her workshop was really, really good. Anyone who thinks they might like to round up some trainers and bring Cathy in to get some PAL education going, just PM me, because I will happily share all the documents I created to market the workshop, solicit sponsor funding, etc.
If organizing a workshop is too daunting, UPenn's website has a form that certified trainers can complete to request the PAL Protocol documents, which include a detailed how-to with demonstration photos. They will not give it to us LE patients, but the site says they will provide it to qualified trainers. Here's a link: http://www.penncancer.org/physical-activity-and-lymphedema/receive-pal-intervention-materials/
I work with my beloved trainer three times a week (sometimes one or two, depending on work travel) and I feel SO GREAT after starting my PAL-compliant program in January! I really do notice my strength. And so far, I have not had any bad LE repercussions. I wear my sleeve/gauntlet before, during and after each session, and we absolutely respect the PAL guidelines during each session. I do have a sense that now I can lift bigger/heavier daily-life items without worry that I'm setting my arm up for an LE flare.
UPenn is now developing an abbreviated in-gym program that is currently offered in Philadelphia as part of a new research project. I understand that it is a four-week program, one day per week in a gym group with a supervising trainer, with the women doing one other day of weight training at home. This is so smart--limit the in-gym time to four sessions, which is enough to teach form and educate on appropriate precautions.
I have been corresponding wtih the program managers at UPenn, because two women here have said they are or will participate, and it's covered by insurance. I want my local LE therapy contacts to be able to offer insurance coverage, too, and the UPenn folks have been wonderful in sharing--just this week--information about how they have set up the program so that most insurers will cover it as PT visits. The new program is designed to be offered by PTs. They tell me that not all insurers participate, but most do, although in some cases the patient's co-pay or deductible means that coverage is not all that helpful. Even so, it's a great start in the direction of having exercise that is configured to help LE be recognized as insurable therapy.
My granddaughter weighs well more than the 5-15 pounds that surgeons have been known to say is the weight limit for women with LE. I would be miserable if I had to respect that kind of weight limit! Not to mention that I have to lift at least 15 pounds into the overhead bin each time I fly for work. Weigh your lightest roll-aboard--all of mine weigh at least six pounds empty, and most are closer to nine pounds. Even if you check your bag, it has to move in and out of your car on the way to/from the airport. Etc. etc. etc. We need to muscle up--safely!
Apr 10, 2012 10:32AM Tina337 wrote:Oh, Kira, I am sorry to hear about your mom. So difficult to deal with long distance, and it is reassuring when you reach a nurse that is helpful. I hope she isn't in too much pain while waiting and that everything goes well during surgery. Is she getting a total hip replacement? I will be thinking of you and your mom. Glad you are keeping up with your exercise routine during all of this, as I am sure it is a sanity saver!
Apr 10, 2012 11:49AM carol57 wrote:
Tina, I am ever hopeful that we can really ramp up LE support around here, but my oh my, it is like pulling teeth to keep the discussion going sometimes. Slow as molasses in a Michigan April! A few folks around here must have labeled me the LE stalker by now.
Wouldn't it be wonderful if we could have a two-week LE boot camp / spa (funny combo, I know) where we could go to get 6 PAL sessions (learn form and precautions) and then be able to continue at home? And have an LE therapist or two available to teach sessions on pushing through LE walls, or whatever...strategies to discuss with LE therapist at home, for example...nutrition sessions...lots of group outdoor exercise? Garment makers' samples to try on? Weight loss-oriented meals, because for some of us, that's an important LE control goal?
The UPenn program gets you 8 supervised sessions, right? In which case, I think a two-week LE jump-start camp could accomplish nearly the same thing. And while I'm dreaming...it should also be FREE! Yeah right...time to come back to earth.
Apr 10, 2012 01:28PM olearca wrote:
Carol, I love your dream and I'm on board to help you realize it one of these days (sooner than later). At a minimum, maybe we can all meet for a spa-type getaway filled with great low sodium, healthy food, long walks and lots of hugs and laughs. I hear you on being the LE stalker. I think the trainers at the local Livestrong program I participated were just "sick to death" of hearing me go on about LE.
I'm having a bug week - but crawling my way back. I think I have shingles - waiting to get into PCP to verify but pretty sure that's what it is - seems like its mild right now, but i'm swollen and wow, pain! So, I think I am "giving in" for now and just managing hydration and sleep and breathing.
Justme - welcome again and I know it's really overwhelming - all this LE stuff. I'm a relative newbie and it's still a learning curve for me - garments and therapists and tips from the wonderful ladies here. But, thank goodness this forum exists because what would we do without each other.
Tina, thanks for all the wonderful info you provided. I'm going to PM you for a few extra questions, if you don't mind.
Apr 10, 2012 02:04PM BeckySharp wrote:
Kira--I am so sorry to hear about your Mom. And so far away. Mine is 90 and I am fortunate she is mobile and independent but I know that could change in an instant.
Carol--Snowing?? It is cooler here today--only 65 and cloudy. I did walk the three loops at the dam--16,000 steps. I would have loved to walk in snow.
Catherine--I did some weight lifting before bc but was not consistent. The exercise science professor where I work developed a program for me and two friends when we turned 60. We videotaped the exercises. But I did more cardio. I started weights again at the urging of my lymphedema therapist. She had attended a conference in which PAL was presented. I have been following her advice. She has me gradually building up. I only see her for measuring but she emails me and I see her at a monthly support group meeting.
Janis--I only have sleeves, glove, gauntlets, night sleeve and breast swell spot. Sometimes I am confused when there is a discussion over some type of garment I do not have.
Apr 10, 2012 02:21PM kira wrote:
Tina, ironically my mother had looked into a hip replacement on the side she broke--she had one on the other side, but the break is so bad that they can't do a replacement.
Unfortunately, a lot of family issues are coming up around this crisis, and they don't seem to realize when they call me at 1 am, that I have to get up for work at 5:30 am....
She seems better today, and surgery tomorrow. Then rehab, and I'm exhausted.
And work was stressful BEFORE this: it comes in waves, doesn't it.
Apr 10, 2012 02:32PM justmejanis wrote:
Becky thank you for the reassurance! I will learn, but still have a long way to go. I don't know anything about this PAL training either. This is the first I have heard of it.
I do however LOVE Carol's suggestion of a two week LE training course/spa combination! That would sure be fun.
Apr 10, 2012 02:39PM MinusTwo wrote:
Since I was just officially diagnosed last Friday & went to my first PT session today, I'm going to post my questions on the GRRRRR site. But I''ve been reading for awhile & am definitely up for a one or 2 week camp. Thanks for all your information.
Apr 10, 2012 02:58PM carol57 wrote:
Well, we can sure dream of a two-week LE camp, but wow, the logistics and cost would sure require some problem-solving! But we can have fun imagining what would happen there. Here's a start on the virtual program: Lots of water aerobics, because water exercise is so good for our LE! And on our virtual spa menu: dark chocolate, at every meal of course!
I just did my day's cardio: Did 4.8 miles in one hour, and a first for me: I jogged 2.5 miles of that without stopping. Today I wore for the first time a new sports bra, best fit I ever found, and the only one that is both comfortable AND stops the bouncing. So I decided to go for it and see if I could jog without falling over, winded. Surprised myself!
I did morning MLD and will do some bouncing on the ball soon, then MLD before bed. And I need more water than I've been drinking, so I will be making a conscious effort to guzzle some of that.
Kira and Catherine--accept the break in activity as the most appropriate form of care for the whole you right now. Elder-care related stress; shingles--so different and yet both surely benefit from some TLC, which means lots of rest!!
Janis, ditto on not being able to visualize all these garments (garment fashion show--add that one to the virtual LE camp!). MinusTwo--sorry that LE means you have joined our ranks, but delighted to welcome you into our support group. Let us know how you're doing on daily care. Those of us posting here are doing so because reporting in helps us stay committed to keeping up the LE care and the exercise.
Apr 10, 2012 03:07PM kira wrote:
Catherine, hope you're on valtrex and feeling better!
I actually rode the exercise bike, just to work off some of this.
But, I am tired, so I'll take it easy.
Binney and I remembered how Suzy talked about wanting to stick a pencil in someone's eye, and unfortunately, that's the level of civil discourse at my work right now, so fighting on several fronts.
Apr 10, 2012 04:33PM ChrisNM wrote:
New to the ;lymphedema jargon. Can someone tell me what Lebed is, please? Also, a source for doing your own MLD would be helpful. Thank you!
Chris in NM
DX 4-2008, stage 1 IDC left; ER/PR+, , lumpectomy, SNB (0/1), 26 rads, tamoxifen
DX 12-2011, stage 1 IDC right; ER/PR+, bilateral mastectomy, complete hysterectomy (1-2012), arimidex, and now qith LE in both arms
Apr 10, 2012 05:15PM kira wrote:
Chris, I've asked Binney--as she has bilateral LE and is our resident expert-- to respond to your post. Here's a site to check out, and there's so much to learn, but you can do it
Although home care and self care are essential, we all need a qualified lymphedema therapist to start us on the path of treatment
There's a lot to learn, but we're here.
Apr 10, 2012 05:44PM carol57 wrote:
Chris, Lebed is a DVD (http://www.gohealthysteps.com/store/?productID=3) that shows a gentle exercise and stretching routine that encourages lymph flow. If you search youtube, you can find some samples (I think the youtube versions were recorded separately, but you'll get the idea. For example: http://www.youtube.com/watch?v=h2luK4JRAbo&feature=relmfu . ) Some of us poke fun at the DVD because it's kind of hokey, but many women here really swear by the method. You can do this with zero fear of harming yourself!
Teach-yourself-MLD is dicey. A youtube search will find you some examples, and once I found an incredibly detailed printed explanation online. The problem is two fold: one, there is a lot out there in pop culture about stimulating the lymphatic system, and it's not necessarily accurate, nor is it necessarily designed to treat lymphedema. Second, there are many variations on performing true, LE-therapy MLD, but what's most important is that the way you do your MLD should be configured to address your LE!
LE is quite individual, and it can move around a lot, so the best strategy really is to have a qualified LE therapist work with you to understand where you have it, how it presents, and then he/she can show you the best way to nudge that lymph in the right direction. A one-size-fits-all approach isn't likely to work. For example, your scars from breast surgery might run in a different direction than my scars, and because scar tissue is a real roadblock for lymph flow, we may need different MLD strategies.
LE in both arms--yikes, you have a mountain to climb, but as Kira said, Binney not only also has bilateral LE and is our resident expert, she has a huge heart and seemingly endless patience to answer all of our questions. I think she found the secret to getting 30 hours out of each day. I'm sure she'll stop by here soon to offer you support and suggestions.
Let us know how you're doing, and while you're in our exercise/LE care thread, please feel welcome to post your daily care successes and challenges. We have a really supportive and caring group going here.
Apr 10, 2012 07:15PM ChrisNM wrote:
I am working with a PT with lymphedema training of some kind, but need to do the research and figure out what we should be working towards. My patient husband has learned from the PT how to do MLD and how to do the compression wrapping. But I'm a bit insecure in what we are doing, and want to figure things out as well as I can. You are helping me get started, so thanks!
Chris in NM
Apr 10, 2012 07:22PM carol57 wrote:
Chris, I'm glad to hear you're getting the help that's needed. There is a very credible online MLD demo, not a substitute for learning from your own LE therapist/PT, but good for more perspective when you already know what you're trying to do: http://www.nwlymphedemacenter.org/vid_mngmntA.php
Wow for a husband who learned MLD and wrapping to help you tackle this thing!
Apr 10, 2012 10:09PM 3jaysmom wrote:just found this thread, came to read, and check it out.. not being active (medical issues ) is kicking MY butt, so im back, and moving around as best i can; with le and ms...3jays
Apr 11, 2012 04:41AM BeckySharp wrote:
Carol--I woke up and decided the retreat would be a good thing if dark chocolate is involved! I will always be a foodie.
Chris--I do the Healthy Steps DVD daily (Lebed). MLD is tricky. I hope your therapist knows how to do it right and teach you and your husband.
Have done my morning MLD. I am going to do an hour on the elliptical then Lebed. Then off to work. It is cold here (relatively speaking--not like Michigan) right at freezing. Same tomorrow. It has been a weird winter and spring.
Up and at em everyone! Thinking about you today Kira. I don't function well when I am tired so I know you will be struggling at work.
Catherine--Shingles ugh!. I had them in the path from the back of my head into my eye and down my nose about 18 yrs ago. It was horrible. I had to see an eyedoctor daily for two weeks and lost some vision in that eye. I think it would be worse on the torso. I did get the vaccine last fall. Hopefully I won't ever get again. I hope you have a light case if it is indeed shingles. Take it easy.