Truncal Lymphedema Episode

dlb, a long car ride can cause problems too. Don't know how far you drove, or how many mountains you crossed to get there. What helps with the long drives is stopping and stretching frequently, some arm stretches, side bends, walking or jogging. Also, maybe better compression for the trip, depending on what you're using for chest compression.

As for the hot baths, it's raising your core temperature as much as heat directly on the area that causes problems. (Which is why women who leave their arms out of the hot water still can have problems with LE.)

Sure hope it's back in control in a hurry and you get on top of causes for next time!

How was the trip otherwise? Hope you had some fun and relaxation!

Be well!
Binney

dlb, I'm sorry you had such a painful flare. I have truncal LE, and my husband and I used to drive from PA to Fla. Every time I'd have a huge flare. For me, it was being sedentary for so long combined with the difficulty in finding low-salt food while on the road. I even found that with the a/c blasting, the sun coming in on me through the car window made me too warm and caused me to swell. I used to get a claustrophobic, crazy feeling and want to get out of the car!! The usual stops to walk and stretch just weren't enough for me. 

My other thought about being in Las Vegas, is that it's in the middle of the desert, so maybe you weren't drinking enough water? It's easy to forget the fluids when you're in low-humidity places.

Very interesting about the stress factor, Betsy. I always forget that one, but I think you are right about that. I've noticed that whenever my husband and I have an argument or I'm upset about something, I will feel myself swelling more. Another reason to remember to breathe during those times. And, actually, our trips to Fla. can be stressful as well because they often involve a lot of responsibility on my part to care for my mother and handle her legal and financial stuff. 

Makingway--the L-Dex brochure states that the machine is not intended to diagnose LE

http://www.impedimed.com/products/l-dex-u400/ldextrade-u4007714.htm

Note: This device is not intended to diagnose or predict lymphedema of an extremity.

Note: L-Dex® values that lie outside the normal range may indicate the early signs of lymphedema and values that have changed +10 L-Dex units from baseline may also indicate early lymphedema. The L-Dex scale is a tool to assist in the clinical assessment of lymphedema by a medical provider. The L-Dex scale is not intended to diagnose or predict lymphedema of an extremity.

The best use of bioimpedance is to measure over time--and it only works on extremities, and one researcher, at NYU--Mei Fu PhD--found it very insensitive.

 I also have a "biorithym": I swell in the evenings. 

And the barometer makes sense--as we swell at high altitudes.

Tell your surgeon to put down the toy, and examine and listen to the patient--just a suggestion.

Kira

 I think the bras alone could have caused it- I know wearing a bra is sure a trigger for my truncal LE. And car rides too for sure. I can't stand to wear a bra- anything with a tight band including sports bras feel constricting. Most of the time I wear stretchy camisoles that provide some light compression, but no constriction. I'm a smallish C cup I think- I know not every one feels like they could do this. I do still wear a bra sometimes, but never underwires as I just find them really uncomfortable. My favorite bra is sort of a neoprene sort of material with a seamless molded cup

Aw, Sharalou, I'm sorry! You sure didn't need any new snarls! Deep breaths -- the drain will be a help, and before long you'll be healed and back on track.

Keep us posted!

Gentle hugs,
Binney

Kira-Thanks for the validation I'm about ready to read my surgeon the riot act. I asked for copies of all my records. And upon reviewing them saw no mention of the pain I've complained about since my operation 1 1/2 years ago. My surgeon told me that I'm her only patient with such issues, which is a lie, because my friend also had her as her surgeon and suffers from some of the same pain. The pain doesn't exist if she refuses to acknowledge it... I'm at a loss because I need a doctor to validate my conditon(s) in order to receive Disability. The attorney I saw told me it was up to me to find a doctor to validate this. Being on county funded insurance doesn't help matters. The doctors are the worst in the business.

Hi, Deanna:

I am so sorry you are having issues, but glad they're getting better.  I'm like some of the other ladies - big triggers for me are long car rides and dehydration.  Those two things alone will make me swell.  For the truncal LE, the biggest help I have found is the MLD.  If you can get in with an LE therapist (you may have already done this) and learn MLD, it will probably make a world of difference...that and lots of water!