Anyone else?

Denise-G

NickyJ - my Lymphedema Specialist is up on things in Europe.  In fact, she just got back from Paris this week.  She is always telling me about the spas that insurances will pay for in Europe!   I am glad for you!!!!

Binney4

I'm a member of a discussion board for women with lipedema (I don't have lipedema--but that's another whole story). Anyhow, some time ago they were discussing using a forced air pet hair dryer (doesn't get hot) to do MLD on their legs, and some of them found it worked well. Lipedema is sometimes quite painful to the touch, and this seemed to ease that as well.

I think the amount of force you're talking about, Hugz, where it practically folds your skin over on itself, would be too much--MLD needs to be "kitten-petting" gentle. But I think the idea's a good one.

Not so good to use for therapy, though, where the actual touch of a knowledgeable therapist is important for assessing the condition of both skin and underlying tissue.

Really interesting. We've also talked some about the use of directed water flow while submerged--very gentle, and I've found it effective. Nicky, can't wait for your reports from the front lines!
Binney

NickyJ

Binney, can't wait myself! Have approval, just need to sort out dates. Also want to talk to a few people about when's the best time to go, because I've already noticed that I swell up quite a bit more when the weather is hot.

What do you ladies think? Is it better to go now before the summer, to go in the middle of summer when I'm at my worst, or to wait til the weather cools down again? Would love to hear any advice

Nicky

hugz4u

Nicky, It would be best to take care of LE as soon as you notice any changes which you already have. Lymphedema doesn't wait for any special time. it just rears its ugly head and if you don't look after it ASAP it may get worse. I think you need to see someone ASAP. That way if you have a flare during the hot weather you will know what to do, cause you will be LE educated. Wish I was going with you!



Binney, We sure do get ideas going here don't we ? Rome wasn't built in a day so we still have lots of time to come up with all kinds of solutions to LE! I don't care how crazy the idea is, if I think of it I am going to mention it because you never know we just might stumble on something. After all isn't that how technology got started in the first place? LET'S KEEP THE CREATIVE JUICES FLOWING!

NickyJ

Thanks Hugz,

I know that treatment at any time is good, the reason I asked is that this is my first spring with LE and I'm already really noticing a difference on sunny days. Yesterday was in the 80's; in the morning my left upper arm was 3cm larger than the right. By 6pm it was 6 cm! Same for my left leg and foot. Not sure for the trunk - it's a bit hard to measure on your own...

Just wondering if the treatment would be more effective if I don't have the heat to contend with as well, but in the meantime I see a pt 3 times a week for massage

hugz4u

Waiting the seasons out to see what will happen to time your treatment is not a good idea. The best time to do it is when you notice you have problems and that is now. It won't go down much in the cooler weather and may stay the same new larger size if you don't start treatment.

 If you catch it now you will have better success and a smaller arm in the end. Whereas by the end of summer your arm could be much larger and more uncomfortable. Same with the rest of the quadrant.

What kind of massage are you getting 3 times a week?

By the way your arm is acting in the heat it looks like you need to be wrapped daily for a couple weeks. I would want to to that now instead of the 95 degree temps coming.  A hot wrapped arm is no fun. Stay out of the heat now if you can.

NickyJ

Thanks again Hugz! That's pretty much what I thought, but as I'm just learning to deal with LE I came here to ask the experts!

The massage I have is lymphatic drainage. It is effective to a certain extent. I definitely feel the fluid moving during treatment even though the pressure is very light. My pt is trained in lymphatic drainage and she listens to me with regard to what's needed. I don't necessarily notice a difference afterwards, but she was on holidays for a week last month and I really noticed when I had none! Since coming to this thread I've asked her about wrapping, but she says not at the moment, to wait until I go to the spa. It's not standard treatment here.

I've a session this afternoon and I can't wait. Yesterday my arm and leg were both very painful. Although I have truncal LE on the left also, luckily I've never experienced pain there yet. On my arm, it goes all the way down one side of my hand, affecting as far as my thumb and forefinger. On my foot as far as my big toe. Difficult because its my dominant side!

purple32

Nicky

This is fabulous news!  I am so happy (and jealous :>) for you.  The squeaky wheel gets the grease. Persistence is the name of the game when it comes to LE, thats for sure. Thank goodness we have this forum and each other.

Do let us know how it all goes.

NickyJ

Thanks purple! Will definitely keep everyone informed. The papers were sent off today, so just the dates to sort out and my bag to pack! Can't wait, not only for the LE treatment, but 3 weeks of being looked after is definitely going to go down well 😃

Marple

Great news Nicky.  You deserve it.

NickyJ

Thanks Marple! So do all of you though. It's terrible to see the difference in the systems between countries. It makes me feel guilty!

carol57

Nicky, the spa is in the Pyrenees, so at higher altitude.  That raises an interesting timing thought. In summer, if the heat in Bordeaux is horrid, you can escape by going to the spa where it should be cooler, no?  One thing to be prepared for is that most of us find that at higher altitudes, we tend to swell more.  But that's in all seasons, of course, so I'd be tempted to schedule the trip for maximum heat relief time.  I assume that the spa's experts in LE are well equipped to show you how to deal with any altitude-related LE flares.

If you write a blog, I'll bet lots of us would be fascinated to read about your experiences when you go!

Carol

NickyJ

That's an interesting point Carol, and its exactly why I want to get as much information as I can before I confirm dates. The summer does get very hot here and it can be very humid too which obviously isn't going to help with LE. The Pyrenees should be a bit cooler, but they are also further south so I think the temperature doesn't change much but there'd be less humidity. I already notice a difference with the weather. Yesterday was 28deg (not sure what that translates as) and last night my upper arm was 5cm larger on LE side. Today we had rain and my upper arm was back to its smaller (!!) 3 cm larger. Found it difficult to walk yesterday too, because my foot, but not my leg, was very swollen and I couldn't bend my toes...

Will definitely write a blog, I'll be very happy to share the experience with you all - I can't wait to find out what it's like!

Nicky

carol57

Nicky, weather changes are the devil with LE.  I hope your weather in beautiful Bordeaux stabilizes so you can at least say goodbye to that source of LE irritant!

NickyJ

Thanks Carol!

It will stabilize soon - from the end of may until September it'll be very hot so I'll have to learn to stay in the shade. A bit unfair for someone who moved to France for the outdoor lifestyle! Oh well ...

carol57

Nicky, I can think of a lot worse than lounging in the shade, in a beautiful part of the world, maybe sipping on a glass of pastis...

NickyJ

This is true! Thanks Carol. Sometimes I need reminding that things could be a lot worse!

purple32

I looked this up http://thermes.luz.org/web/FR_Luzea/156-lymphoedeme-traitement.php

and am presuming this is Nicky's spa (?)  I can't speak/read French, but it sure looks like great treatment .. .for anything!

Enjoy!

NickyJ

That's it Purple! And yes, I know I'm very lucky.

Anything you want translated let me know

purple32

Nah, that's okay Nicky. Thanks for the offer, but I think if I knew anything more about the spa I just might get too jealous !  LOL

So hoping your time there does you good!

Btw, I see you are on tammi. Sip your java ! Here's another study hot off the presses regarding tammi and coffee:

www.opposingviews.com/i/health...

NickyJ

Purple-

Was ironically drinking a cup of coffee as I read this....

Thanks for posting the link!

Nicky