What causes your LE flares?

I have Stage I LE so I'm lucky.  For me, arm flares are rare and I can trace them to some carelessness on my part, like overdoing it and not wearing compression.  I'm still trying to figure out my truncal flares, but these are my prime suspects so far:

• Salty meals, especially if I indulge on 2 consecutive days (Mexican and Chinese food are my downfalls)
• Lack of hard aerobic exercise for a few days
• Failure to do Lebeds for a few days
• Failure to do MLD  for a few days

It seems I can get away with these things once, but not two or three times in a row.  Or I can get away with it if I only allow one of these things to happen, but if I allow 2 or more of them to happen at the same time, I tend to flare.

I'm still experimenting with other suspects, like certain bras, not wearing my UnderArmor for compression for some period of time, etc.  But the 4 above I've pretty much figured out are my main "bad guys". 

Becky, may I just say that you're amazing: so compliant and the 42 lb weight loss is great. I'm feeling guilty as I read your post.

Early on, I was more compliant--but have started to skip some of the MLD at times, but always wrap at night.

Carol: my flares have been caused by increased activity--I swelled when I started a new job in 2009 that involved a lot of writing, heat, flying, not being hydrated enough, and early in the the course of my LE there was this sense of horror as new swelling just appeared no no reason--in my finger, my palm.

It's been a year since I broke my LE hand: and the cast did me no favors. But it's much, much better now.

I still get the occasional cord--had one two weeks ago--I emailed Jodi Winocour in disgust, but some stretches and skin lifting and it's better.

Oh, and hormones--still perimenopausal.

Totally agree with everything Mary wrote (as always)--aerobic exercise is so good for LE. 

Kira 

I am blaming Beethoven for my LE: the final movement of the 5th Symphony to be exact. My first orchestra rehearsal since the surgeries and there it was a few days later (I'm a violinist - using the bow arm under tension seemed to be the trigger because light, gentle playing during the summer was no problem).

Yard work that same week did not help the situation. We will need to hire tree and shrub maintenance people in the future. 

Hey I am just so compliant because you all have scared the heck out of me about flares.  I lost a lot of weight several years ago and gained some back.  I was so mad at myself.  Plus I read on the hormonal therapy section that I would gain weight on tamoxifen.  I was bummed out.  But I am losing weight much easier being on tamox than off.  The only good side effect I have had.   LE maintenance is very time consuming Carol.  Becky

Leah: there's a lot of research on LE and inflammation--so it makes complete sense that any inflammation/trauma/illness can cause a flare.

Becky: it really helps to hear how compliant you are--I let the second MLD slide, but I was right in there with you for the first two years. My LE therapist says that when we get good control, then we experiment with what we can get away with.I think I just pooped out a bit. She thinks I'm the most compliant person in the world, but you are much better than me. I wish I did an hour of exercise a day, and could lose the pesky weight that has crept up on me.

Sushanna--my LE is in my left, dominant hand. Saw my ob/gyn yesterday, and she's one of the few doctors in my "treatment group" who actually examines my hand carefully and can see that darn residual puff in the web space between the first and second fingers. Repetitive motion is such a trigger: we got a new ceramic cooktop and I have to be careful with the cleaning of it.

Kira 

Wow, great thread. Carol, I'm new to this also and have been trying to figure out what makes the swelling more or less. I've not had a true flare yet, but I do notice lack of hydration (I'm really bad at drinking enough especially when the weather is cooler), salty food (Asian especially, drats) and not doing MLD religiously. I still can't tell if the daily sleeve helps or not. And I get truncal which was definitely exacerbated by TEs and now by various shelf camis, or surg bra. I have yet to find a bra that supports my implants but doesn't cause swelling. I'm continuing to experiment.



Mary and Kira, good to hear that you both think aerobic exercise helps. I can't wait to get back to it.



Becky, you are inspiring me to be more diligent. Way to go on the weight loss.

Interesting discussion. I was diagnosed with LE in July of 2010.  At that time my arm was 10.2% (with the overall measurements and computer calculations they do) than my non LE arm. After 2 days of wrapping by the LE therapist my arm was down to 2%.  My therapist taught me how to do self massage, taught my daughter how to bandage and take measurements, and had me fitted with a daytime compression sleeve and glove. My daughter took measurements weekly and over the next nine months my measurements went down and then stayed pretty steady.  I was faithful about doing my daily massage and wearing my garments and taking the general precautions we are taught.  Starting in May my measurements started slowly going up with most of the swelling in my forearm. It was before it got hot, I don't know of anything I did differently , it just started swelling and getting hard. I was in touch with the therapist and tried massage twice a day.  My daughter bandaged a couple of times but we didn't see much progress.  I went back to therapy and was now 18% larger, it took two weeks of bandaging to get the measurements down to 6% and I now wear a night sleeve nightly adding extra compression (the jacket over the Solarius Tribute ) twice a week and bandaging twice a month. My therapist is hoping that these steps will help maintain or even decrease the swelling.

What I learned from this last experience is that I can't always control what happens with my LE.  I can do everything possible to prevent flares and I admire all of you who have really disciplined yourselves with exercise and diet and other precautions. I have a number of tools that my therapist has armed me with and a game plan that we can keep modifying if necessary. My therapist doesn't know why I may have flared.  She has said in her experience it just can happen.Everyone is different and experiences this disease so differently. I guess for me since it is a life long chronic condition the sense of control comes from knowing that I have the support I need to manage this awful disease.  I may not be able to prevent flares but I have confidence that I will be able to manage them and find a new normal as I had to do recently.  I feel very blessed to have a wonderful daughter who helps with measuring, bandaging and giving me moral support, a therapist who is very skilled, empathetic, and makes herself very available, insurance that pays part of the cost for the things I need and this wonderful discussion forum where I gain so much knowledge, support and inspiration.

Thank you all for sharing. It helps make living with this double whammy  of breast cancer and LE possible.

Best wishes to all,

Cori

Kira--Funny that you should mention ceramic stove tops.  I started to clean my friend's and half way through realized that it was a really bad idea.

Barbe--Thanks for the tips re: ceramic stove tops.  I had no idea! 

RE: Ceramic stovetop - I have the best way to clean mine - can't remember where I read this, but it really works.  Just sprinkle baking soda on it, spray some white vinegar (it will bubble) and let it sit a few minutes.  Then wipe off with a damp towel.  It WORKS.  And you don't run the risk of scratching the glass or flaring your LE arm. 

Things that make me flare -

Flying without being wrapped in bandages.

Not bandaging twice a week.

And I hate bandaging. 

Going without my nightsleeve (solaris tribute) for more than 2 days a week.

Not walking at least 5 days a week.

Salty food.

Repetitive motion - like playing the guitar for more than an hour.  or working on the computer for more than 3-4 hours, which is what I get paid to do. 

Putting lots of weight on the arm/lifting too much weight.

That's all I can think of now...I hate flares. 

I really love that mad little man.  He is sooo cute.

Barbe, the woman who cleans my house pretty much only uses vinegar, and the previous woman used all the smelly cleaners, and wondered why her asthma was always acting up. The house feels so much better after the vinegar cleaning...

Back to flares: there are obvious precipitants and the ones that come out of the blue when you're doing everything right. Those are the ones that are REALLY frustrating.

I once went to a meditation workshop and had to sit on a mat for hours and clasped my hands around my knees, as I actually didn't find that sitting comfortable, and came home with pitting edema on the inside of my wrist. Didn't do wonders for my mental state....

Kira 

Barbe, it was for a contemplative studies course, and it was a special instructor who taught on the west coast and did a 7-8 hour meditation session, and it was focused on expectations and forgiveness. I went with a colleague who is a psychologist and was very involved in the contemplative studies department.

But, the room was full of undergraduates, and these mats and little butt pillows, and I found the sitting very, very uncomfortable. Some people sat in chairs, and I should have joined them.

Jon Kabat-Zin who started the Mindfulness Meditation for medical patients at U Mass has a fellowship program, and I called them, and they said they required a regular practice of meditation and having done a 7 day silent retreat, before you could even apply to be trained in the program.

I liked his books and heard him talk, but that was too much for me.

Kira 

Oh! I forgot to ask you guys a question. In my ongoing quest for a wardrobe that supports going form free, I have become obsessed with skinny legged jeans and boots. I have gained a few pounds (around the middle, naturally) which has caused my clothes to be a smidge tighter than I'd like. I'm working on shedding but was just away on vacation and let things slide. Anyhow, my question is: Could a muffin top limit lymphatic flow and set you up for a possible flare? Please say no!

I would think that JEANS would be way worse than leggings!!! That's MY story and I'm sticking to it!

Kira, our medical care pays for the course it's so respected up here!! I am enjoying it very much as I took the Hoffman Quadrinity Program about 20 years ago and find the thinking very similar.