Heat worsening lymphedema?

Emilyc

Yesterday went to friends cookout and did not wear my sleeve. It was warm/muggy outside and we were in the heat for maybe 4 hours. Today I think my arm is slightly larger. Of course, it is scaring the bejesus out of me and I have been doing my mld like crazy today.

Has anyone had this? How long to get rid of the damage?? Oh dear!

ksusan

Heat can increase LE. Do you have a PT or someone you work with who can advise you?

Emilyc

Yes but he is away. There is no redness or signs of cellulitis so I am thinking that the heat did it.

ksusan

Does he have someone covering his practice?

Emilyc

I doubt it!

Kicks

Do you usually wear your sleeve and glove/gauntlet? It could be not wearing it that brought on the swelling. There is also the possibility that you either did more (or less) than usual but didn't realize it. For me the more I do (the more active I am) - the less issues I have.

Some do say they have more issues when it is warmer/hot but I don't. The bitter cold of winter gives me a lot more issues.

Emilyc

And when you do have these issues, how long to go back to your "usual" size??

Kicks

As I said, I don't have issues from heat but from cold. I never really thought about exactly how long but do make sure I spend more time in the gym as I can't get outside doing what I usually do when it's warm. In below freezing temps with subzero wind chills and everything covered in snow or worse -ICE -can't ride the horses, ride my bicycle, mow yards, garden, play with dogs and my bunny outside (too cold for them to be out for any extended time). So I do go to the Base gym a lot more and spend more time 'doing stuff' there. But it really isn't as good as being able to get outside and do 'stuff'.

I also use my FlexiTouch twice a day (instead of once a day) for a few days which definitely helps. Also use my night sleeve every night and the over sleeves for it when needed.

You might want to try wrapping at night if you don't have a night sleeve - some do.

mary625

I would definitely try wrapping for a few nights to bring it down. This summer I've been wrapping over my night sleeve as needed and am getting consistently good measurements even though some days I feel that I've had swelling particularly when I couldn't wear my sleeve. The wrapping done well should really bring it down.

AmyQ

I'm in the heat-bothers-my-arm more-than-cold-does camp and even though its still technically summer, our weather has turn fall-like which agrees with my LE for now. Next week higher heat and humidity so more problems. I do hope you can get it back under control. LE is a never ending concern, besides BC. What a double-whammy for those of us suffering from LE.

Amy

Kicks

AmyQ - yeah here in western SD we have already had early fall temps. So far not cool enough that I can't do what I normally do so no problems yet. Well yards aren't growing that much so don't have any of them to now.

I'm convinced that this is going to be a cold winter for us. All our animals are already shedding summer coats getting ready for winter coat. What happens happens - can't change it, just be prepared - which I am. I also talked with a Lakota Elder who said the same thing based on the way all animals are behaving.

Binney4

Emily, a LE flare does more than cause swelling, it causes an emotional reaction as well--panic, even despair sometimes, maybe anger, heightened depression and/or frustration. I'm not sure why that is, though I suspect it's at least partly a physical reaction, since the lymph system is body-wide and controls a number of over-all functions. In other words, expect anxiety, but also know it gets better, usually pretty quickly.

Have you learned to wrap your arm? If not, that's a worthwhile project, because it's one of the best ways to bring down the swelling, and knowing how to do it yourself means you don't have to keep a LE therapist in your pocket.

I live in the desert, and my therapist always has a heavy workload in the summer, especially August and early September, when the humidity goes way up and adds insult to misery. But as Kicks points out, ANY extreme temps can cause flares. Next time you're going to be out in the heat you'll know to take precautions such as wearing your sleeve and glove or gauntlet and taking some indoor breaks from time to time to cool down. If it's not too humid, a spray bottle to douse your clothes with works well too. I can spray my sleeve as well during most months--just so it dries out pretty quickly and doesn't stay damp and invite skin problems. Stay extra super hydrated too--water, not alcohol or caffeinated beverages.

Exact recovery times would be impossible to say, since it depends on individual differences, but with self-mld, wrapping and good self-care, I've managed to get it back into control in two or three days.

Please do keep us posted! Gentle hugs,
Binney

Emilyc

Yes, I already was wrapping every nite and sleeve during the day. Thank you all for the encouragement. It really helps. it seems to be a bit better this morning but it's too early to tell.

yes, this is really a pain in the you know what!

Emilyc

Binney's description fits this to a T - panic, despair, anger............yep!

I have been staying inside today with compression sleeve...it does seem to be OK now but I have looked at it so much I am no longer sure of anything!!!

Kicks

Do you have one of the little tape measures that are made for use with keeping track of 'size'? Using one takes away questions of increase/decrease (I have to write it down to remember). They are designed to measure around an arm or leg easily - not having to hold together.

Emilyc

Well, I have a fabric type tape measure that I use in a couple of spots and that does help quite a bit.

I am re-learning what will now be my "normal" since I had an episode of cellulitis a few months ago. Set me back quite a bit in the head department, if you know what I mean. Luckily, I now have a great therapist from whom I have learned a lot. I just need to keep learning and watching for new signs/changes. Having this forum also is wonderful for my fragile sanity!

Emilyc

Ha! I can laugh at myself here - by therapist I meant LE specialist although maybe I could use a head therapist too!!!

Binney4

Emily, a good LE therapist also has to be a head therapist--besides re-engineering our entire lymph system, they do have to see us through all the angst and frustration. Two for the price of one!

Hugs--and chocolate helps too!
Binney

Emilyc

Thanks to all who helped me here. I've been keeping my stinkin' arm cool, lubricated, massaged and sleeved daytime and it is good! Not perfect but good!