How do you know its lymphedema?

Chloesmom

very confusing. I lifted something heavier than my purse, but not very mich and the place on the front of my chest near my arm pit swelled and a little down my side The only place I have a big issue is outside my bathing suit top in front of my arm pit. It's hard to pit any compression on it. When it swells my tank top strap is tighter.

carol57

ciaogina, it's lifting unaccustomed weight that we suspect can trigger LE. No one has actually proven that, to my knowledge, but it makes perfect sense. Let me explain: Lifting something that's too heavy triggers a stress response to the lymphatic system, and the lymphatic system responds by sending lymphatic fluid, or lymph, to the rescue. That works just fine if the lymph has somewhere to go, but when we have scar tissue, missing nodes, etc., the pathways are diminished or blocked, and the lymph pools where it should not, causing swelling (or maybe just the early onset of LE, which can trigger other symptoms besides swelling).

So, the idea with weightlifting is to slowly and gradually build up your limb and torso strength, so that you increase the amount of weight you can bear without triggering the stress response. Slowly and gradually means you start with minuscule weight (1-lb dumbbells), adding reps and weight in very small increments, with lots of time between the additions. General consensus is to wear a sleeve and gauntlet (or glove) while exercising, including weight lifting, to help nudge the lymph along as we train our arms and limbs.

Weightlifting works to develop muscle strength by pushing our muscle fibers to their exhaustion limits, which in turn prompts the body to respond by building yet more fibers. So naturally, the process of strength training with weights is going to trigger a help-me response to the lymphatic system. Body builders and serious weight trainers know that the process is working when they get D.O.M.S. --delayed-onset muscle soreness. DOMS typically shows up I think 30-48 hours after a hard workout. If you've ever had DOMS after a workout, or an extra hard day of gardening or whatever, you know what I'm talking about. That muscle soreness is our first clue that we're tempting fate with the lymphatic system--if you're sore, you've triggered inflammation, and the lymphatic system wants to fix it by you guess it...sending lymph to the rescue.

Perhaps that explanation helps explain why LE-exercise experts recommend using weightlifting to build strength so we can ward off the evil lymph rescue, and also why we have to trick the body into letting us build muscle mass without invoking DOMS, meaning starting with very light weights and adding weight in small, infrequent increments. If we get sore after a workout, we pushed too hard. We want to work hard enough to stay just under that soreness threshold...hard enough to add some muscle fiber, but not TOO hard to where we create a lot of inflammation in the process.

Here's a document that gives more detail about this topic, plus gives specific LE-friendly tips for all kinds of exercise: http://stepup-speakout.org/Handout%20doc%20for%20S...

And here's a related document for trainers, LE therapists, yoga teachers, Zumba or Pilates teachers, etc., in case you need to educate anyone who's guiding your exercise: http://stepup-speakout.org/Trainer%20doc%20for%20S...

Final thought--be wary of body-weight strength training, i.e. planks, push-up, or downward-dog-type yoga poses. Also, nix on the therabands, stretchy cables, TRX web method, etc., while you're developing your strength. All of these methods do indeed help you develop strength, but they don't allow you to measure the resistance (and add it in small increments) as you can do with a set of dumbbells or the weights on a machine. When you're stronger, and especially after many months of gradual resistance-building with known weights, you'll understand how your arm, torso etc. responds to strength training and you might experiment with a plank or two. I currently do use all of these non-measured methods to build strength, especially when I travel and can tuck a few resistance bands into my suitcase to keep my training up. BUT--that's after three years of progressive resistance training in the gym, using weights, and often with the help of a personal trainer who was kind enough to attend a workshop I asked him to attend, all about providing personal weight training services to clients with or at risk of LE.

Long answer to your question; sorry but I'm a writer and my fingers just fly on my keyboard. But you can do it! I love to kayak, and a couple of times I strapped a pedometer onto my paddle, to see how many 'arm steps' I was taking in a full day of paddling. On average, 19,000! (In my sleeve of course) No way I would attempt that, had I not been doing the steady weight training to condition my arm for that kind of hard, repetitive work.

Go for it--strategically!

Carol

doxie

Carol,

Thanks for that well written reply.

A couple notes. I found that deep breathing after weight lifting helps move lymph fluid. It can be via aerobic exercise, rebounding on a trampoline, or simply taking deep breaths - there is a method that specifically helps move fluid through the body. Not sure where a link is for that info.

Also, in support of kayaking which seems over the top for someone with LE, I've found that it is the best upper body exercise I've used for controlling my LE. It's the level of resistance you choose plus a continuous punching of your arm up into the air. The challenge for me is getting the kayak to and from the water safely w/o triggering LE. By yourself this requires the proper conditioning. And/or you can get some help from a partner.

ciaogina

Carol--thank you for your replay. I will check out those links. Now my thumb and thumb pad and top of my thumb are swollen. Went to PT today but she didn't take measurements. Last two weeks though the difference in measurements is insignificant. So I was feeling better about it, but now with my thumb being swollen, not so much. Just worried. I will check those links---thanks again.

ThinkingPositive

so I started to go to PT, 1st session she measured my arm.. looked at my swelling in the chest area and back under arm area, and looked at the cording that I seem to have. Gave me a few exercises to do at home each day. 2nd session, had me do the exercises and gave me a few more to do while there. Then she did a manual lymph massage and showed me how to do it, supposed to do once a day. Its very difficult to do this for the chest area. How many times does this need to be done before swelling goes down?? I go back for physical therapy on Tuesday again. Will go three times next week. I assume each time they will do the massage. Also having difficulty finding a camisole that has wide straps and support. Just really wondering what to expect from the massage and how long before the swelling goes down. Should it be immediate and what if the swelling does not go down?

Straitlover

ThinkingPositive, I went for my first PT appt the other day. She recommended a compression camisole from Target, Assets by Sara Blakely (maker of Spanx, these are a cheaper line) wide strap for around $25-26. I am headed over there in a little bit to see if my local store has any in stock.

ThinkingPositive

Once you receive a MLD massage, should the swelling go down right away or does it take numerous times. The PT did it once, gave me the instructions and told me to do at home as well. I have difficulty with it since its hard to reach my left arm all the way over to the right side where the swelling is. I also have a port in so its difficult to massage above the breast area and the collorbone area. After the PT did the massage it did not seem as though the swelling went down any. Should it have? Not really knowing what to expect. I am doing the three exercises that she gave me each day. Just don't want this to get any worse if it is infact lymphodema. Also looked at all the suggestions that everyone here posted and cant find compression camisole that comes high across the chest. I do have the binder that I got when I had my surgery, but that does not even look like it comes high enough. The picture she drew for me comes just below my collar bone. I go Wednesday again, so I am meeting a different PT so maybe she will have a different suggestion.

glennie19

in my case,, it doesn't always go down right away. Sometimes it takes a couple of treatments.  And some therapists are better than others.  I had one that her treatment didn't seem to do anything. The one I have now is better. I usually feel better afterwards, but mine is really mild too. So that could make a difference.

Did you check out the breast binders or binder bras at EAB Medical?  Would those be high enough?

ThinkingPositive

Thats the breast binder that I got after my mastectomy. They gave me one to take home so I had an extra one. I just put it on tonight. Its the one that has the velcro down the front. It comes up high but not as high as the pic she drew. Maybe I will wear it there when I go for next PT and see what she says. When you say yours is mild...can you explain what you have? I am still trying to figure out whether what I have is actually LE or not. The PT saw the swelling but could not really say if it was LE.

glennie19

it's hard to explain on the trunk.  With arms, you can measure both and compare them. My LE arm is just a little bit bigger than the non-LE arm.  With the trunk,, I have a "puffy" "swollen" feeling. It did not start for me until I was 9 months post surgery, so it was definitely too long for it to be post-surg. swelling.  It just feels swollen and heavy. But to most people,, it would not be noticeable.  I think you would have to be an LE trained person to see it. I think if it was more than that,, it would be classified as more than "mild".   But I'm FAR from a professional on this.

I think it is a good idea to wear the binder for your next appt and see what the PT says.

Nomatterwhat

Glennie - I saw my PT today and we talked about the camisole and when I asked about the breast binder, she wasn't really excited about that.  She wants the Lymphodema to go completely out of my chest area and now she has found cording under my arm.  Now she wants me to get a sleeve to wear with the camisole.  What is your suggestion? What do you think of the t-shirt?

glennie19

I went with the breast binder and swell spot, because I could not find a compression shirt that fit me.  The UnderArmour were all too big. (I'm petite). so there was not enough compression where I needed it. And other brands that I tried, (can't remember names now) just didn't fit properly. Too tight in armpit, not enough compression, etc. I just couldn't find anything that worked for me.    Many on here have had luck with UnderArmour, or Sassybax or other compression shirts. If they work for you,, great!!  Definitely give them a try.  Check with some of the other ladies for ideas on which brands are good.  One of my problems is that I'm a Uni MX,,, so it was difficult to find a shirt that gave me enough compression on my flat side w/o compressing my remaining breast too much!

ThinkingPositive

Nomatterwha.... looks like you have similar to me. I also have cording in the arm. Although no swelling in the arm. Where is your swelling? What is your PT doing for you?

Glennie19...my swelling you can see under the arm area...its very flabby... and jiggly??? I can't find the right words to explain. In the back area it may be puffy... but the chest is difficult to tell how much is swollen and how much is from the tissue expander... hopefully this is not more swelling that would make it more than mild. Its really tiring me out.

Nomatterwhat

ThinkingPos - I have the cording under the arm closest to the lymph node scar.  Very painful when the PT pulls and presses on it.  We are trying to get it to "snap" and hopefully it will on Thursday when I see her again.  She thought it was lymphedema at first, but when I kept whining about how painful it was, she decided that the lymphedema was probably not the problem.  The first time I saw her I did have lymphedema and then had to stop seeing her to start radiation.  She measured my arms the other day and they are the same measurements as before radiation.  Now she has determined it is a very mild case of cording. 

ThinkingPositive

Question for anyone who may be able to answer - if you have lymphedema, does the swelling come and go or is it always there?

turtlelady

ThinkingPositive, for me it's always present. As long as I'm all wrapped up, the swelling and pain are lessened considerably. But it's still clearly puffy from my sternum to my back and down my side under the arm. It never just spontaneously goes away without wraps. I have been "officially" diagnosed by my surgeon. I don't know if that's the way it is for everyone, but that's my situation.

turtlelady

ThinkingPositive, looking back I noticed you had surgery only 3 mos. ago, so it's probably too early for anyone to diagnose lymphedema. Post-surgical swelling can last longer than that. I wasn't diagnosed until 7 mos. Although I was swollen the whole time, it got worse between months 4-7. It's great that you're getting treatment so early, but it's still too soon for you to start getting worried.

ThinkingPositive

Thanks for the responses. I am just so worried.. especially since I might need radiation and if you already have lymphodema prior to radiation I can only imagine thats not good. Also which doctor do you see when you have problems? I went to the Lymphodema Physician just to get a script for PT, but she is out of network. Would a regular Primary Care Physician be able to take care of you?

glennie19

ThinkingPos,,,, any doctor could write you a PT RX.  Does not have to be Lymphedema Doctor.  MO or PCP or anyone can write it.   Where did you go to LE Doc, if I may ask?  There are none where I live and I have wondered if I should find one for a consult.

For me, the swelling comes and goes.  After a full day of compression, it is much less. I don't wear night garments so sometimes I'm puffy in the mornings. And I can't sleep on LE side cuz that seems to aggravate it.

ThinkingPositive

Glennie, I am from New Jersey. The Lymphedema Physician that I used was at the hospital I am using. St. Barnabas, Livingston, NJ. They have Lymphodema Center at the Ambulatory Care Center at the Hospital. Thats how I found her, figured I would go to her for an assessment since I wasn't sure who else and others were telling me they didn't think it was lymphodema. She gave me the script since she did notice I have some cording and also said that they would work on the tissue that seems to be swollen. I guess its better to start earlier, for prevention ?? Or so that I won't get it as bad, if I am going to get it??

glennie19

I think it is good to start earlier too.  Maybe it is not LE,, maybe it is post surg. swelling,, and I have no experience with TE's, so not sure at all about how that could affect your swelling. At least the PT can help with the cording and if there is LE, you can learn how to manage it.  Keep us posted!!

ThinkingPositive

I will. Off to work - first time in 3 months. I have been out on short term disability. Thought I would go in a few hours when I can.

Binney4

Nomatterwhat, have you checked out the StepUp-SpeakOut page on Cording? It has information for physical therapists as well as patients. There are some advances in research regarding cording that PTs may not be aware of. There's also a link to a website just for therapists treating cording, where they can share their practices and results. It's here:

http://www.stepup-speakout.org/Cording_and_Axillar...

Glennie, for most of us with bc-related LE a consult with a lymphology specialist is not necessary. They deal primarily with LE that doesn't have an obvious cause, or LE that appears to be untreatable by standard treatment. The medical professionals who treat bc-related LE are well-trained lymphedema therapists (always assuming our doctors know enough to send us to them!) And that's a very good thing, considering how very few lymphology doctors there are (it is not a recognized specialty, so lymphology doctors are self-declared. ThinkingPos, I'm guessing you're referring to doctor Francis, who is very knowledgeable and patient-friendly. Seeing her was a good idea, but certainly any member of your treatment team can write a prescription for LE evaluation and therapy. It's just that it can be hard to get a doctor to do that if they aren't "up" on LE.

Keep us posted!
Binney

ThinkingPositive

You're right Binney4. No one was ready to say it was LE...nor even tell me to go for PT. The PT I saw today said that what she was looking at did not appear to be LE. But getting the PT going now will help with the cording plus. I guess its good to get things moving if one is not really sure its LE. And yes I did see Dr. Francis. I thought it would be a good idea to be assessed by her. She was very nice. She also thought not LE when she examined me but said it would not hurt to go to PT especially for the cording. No one else told me anything about cording.

Ended up at work today for the first time in 3 months... after sitting for 4 hours I now have pain the my back by my shoulder blades. Its been like that for the past couple of days since I have been sitting at the computer for many hours. Hoping that the pain is just from that. Sounds reasonable, right?

Nomatterwhat

Thanks Binney4 for the website link.  I am heading on over there to check things out. 

You are so right ThinkingPos.. nobody told me about the cording issue either.  All of my team has told me that it is Lymphedema, but now it may not be.  The PT and I are going to talk I the morning.  Will keep you ladies posted and thanks for all your help. 

Chloesmom

mine was 1/2 post surgical swelling, 1/4 seroma and 1/4 truncal edema. It all looked the same and was swollen from shoulder blade to pecs to breast bone. but the first 2 went away and the 3rd (pecsand arm pit) fluctuatesif I do too much with arm

ThinkingPositive

Chloesmom, how did they tell it was a seroma? Your surgery was just in december...mine was late Oct..I think too long for surgical swelling although others have told me it still could be swollen. To me it looks like excess fat leftover.

glennie19

Binney, the main reason I was thinking of seeing someone else, was to get some other ideas about truncal compression.  My LE therapist is great with MLD and exercises and all, but she has not been really helpful with finding truncal compression garments, etc for me.  It is complicated since I'm a UNi MX and have a shoulder problem on the non-LE side where I can't put too much pressure on it.  I have been the one to find things that were suggested here, or on StepUpSpeakOut, or other websites and show pics to her to see what she thinks.  I've tried many things, a lot which didn't work out for one reason or another.   Would LOVE to find a lymphedema "Shop" where I could see swell spots and other products and try things on to find what would work for me!  Know of a shop like that?  I would travel to it!!    Any upcoming conventions that I, as a patient, could attend? 

I'm in a small town, and my LE therapist is the only one here. And there is only one medical supplier here too. And they haven't not been very helpful at all, and one of the owners is downright rude, so I prefer to not go there.

Binney4

Glennie, YES! There's an upcoming Patient Summit at the World Congress of Lymphology in San Francisco, September 8-9, 2015.co-sponsored by the National Lymphedema Network and the International Society of Lymphology. More information here:

http://www.lymphology2015.com/program/patient_summ…

There will be lectures by some of the leading lymphology doctors and researchers in the world, and workshops on specific topics of interest. But maybe best of all is the Exhibit Hall, where all these LE product people set up their booths and display their wares and you can actually HANDLE all the stuff and TALK to these people--yessssss!!! Amazing opportunity. Some of our fellow bc.org lymphers are already planning to attend, so it's also a great meet-up opportunity.

DO IT!

Hugs,
Binney

P.S.- you may have to bring your own chocolate...

Chloesmom

It all looked the same just swollen, but the part that hurt was the place that stayed swollen. The other part just felt bloated and compression felt good on it and it stopped hurting when snuggled with garment. The post surgical part was firm and in tender focused place near sternum. At least that's my understanding.