Does your Lymphedema Hurt?

Kawee,  When you get your LE treatments, does the therapist do any massage on your lower abdomen or your neck?  When I added more time working on my abdomen, I started seeing better results with the rest of my MLD work overall.  Generally, I can feel some improvement a couple hours later.  Lymphatic fluid is slow moving and slow responding, but it usually does respond.  Someone said is "slow and stupid", which is about right.  You may also have caught some of our comments that in addition to LE being painful at time, a flare can also create an emotional response.  For me, I'm crabbier than the dickens and bigtime edgy.  Crank, crank, crank.  I try to keep up with my MLD since I do see decent results.

Good thread.  I have very minor swelling in my thumb and arm with no pain there but I do have the heavy feeling in my upper underarm and just below on my trunk.  And it is painful.  My therapist said I don't need a sleeve unless I fly.  I'm doing self massage and some stretching exercises.  I'm not seeing much change.   Some days are better than others.  

How do you girls elevate?  When I sit on my couch I put a small pillow under my arm.  The pole thingy for walking sounds great but it would only work for me when doing exercise walking.  When I'm going about town I use busses and pull a rolling backpack and carrying around a big pole would be a hassle.  

Peggy 

PS. How about at night.  I am a 'side sleeper'.  When on my good side I elevate my bad arm with a pillow but I usually end up on my bad side with my bad arm under the pillow I'm sleeping on. 

Peggy, here are some pictures from the StepUp-SpeakOut site with ideas for setting up pillows to elevate your arm at night. (They're on the RIBP page, but just as useful for LE):
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#sleeping%20positions

It all takes some getting used to, but it's worth it to wake up with your arm in good shape!

Be well,
Binney

Edited to add, when I tried to make that link work it only went to the RIBP page, not to the pictures. I'll try pasting it again here, but if it doesn't work just scroll down about one-third of the way down the page and look for the pictures of someone sleeping. Sigh!

http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#sleeping positions

Hmmm. The part this program keeps erasing is Radiation_Induced_Brachial_plexopathy.htm Maybe if you piece that into the above it'll work. Looks like it's a glitch in the new bc.org changes.

KC,

Well, she does massage above my collar bone and yes, on my abdomen too.  My shoulder, arm and side of my hand have really been hurting today, and I have felt really tired also.  

How many times a day do you do the MLD and how long does it take you.  I hope I'm spending enough time on it. 

kawee- I do the MLD at least once a day but if I'm in pain then I do it more and it seems to help.  It feels like it takes me forever but I'm still learning how to do it.  I'm sure as time goes by I'll be able to do it faster.  The first LE PT I saw taught me a form of MLD that took about 5 minutes.  Not very thorough at all.  My new PT's technique is much more thorough but also takes longer.  I wish there was a video out there where we could follow along.  It would be much easier.  

I was very interested in seeing these sleeping photos, it  is a very hard part of my life, never being comfortable sleeping. One thing I have learned to do when I wake up, is to begin MLD, it is relaxing and I often fall to sleep again half way through.

But back to sleeping, what a challenge to organize the pillows, dog and husband!

Hmmm, the NOT sleeping on my side doesn't work for me. I am a ture side sleeper. My PT told me to try and sleep flatter, but I need to sleep up alittle for my stomach. UGH!!!!

One thing I do is massage constantly!!!!!! I almost always have a jacket on in school so no one can tell. I'm also trying to massage and stretch my scar tissue so I secretly move funny til I feel something pull.

Because we are switching ins 'policy deductibles" (whoever thought that June was a good time to change info was CRAZY!!!!) so I can't go to my LE til June 1st because it's just throwing $$$ into a junk pile .

Does anyone else have an issue with their sleeve getting to tight in the afternoon and itching???? I have to take mine off because it drive me nuts. I figured out yesterday that it needed washed, I wore it almost ALL day!!! LOL

Pip- I don't have much swelling, either. It was the ache that wouldn't go away. I really hope you don't have it but get it checked right away. Sometimes it can be hard to be seen by someone right away. (I had to wait 6 weeks to see my LE PT because she is in such demand.). I would suggest making an appointment as soon as possible. The sooner it's treated the less chance you'll end up with a lot of swelling. Even if you don't have it they'll do baseline measurements and give you some great LE precaution education. Good luck.

I find my sleeve leaves deep marks where I bend my elbow and at the top of my arm. My PT says it's the right fit and I am putting it on correctly. She hasn't seen the marks yet but next visit I will wear the sleeve so she can see. I do MLD too several times a day but don't see any improvement. Wish I could get the swelling down before I put my sleeve on.

I just saw my doc.  She thinks it is radial nerve damage.  Had x-rays taken and she will call me on Tues.  (Monday is a holiday here in Canada)

My LE started when I went back to the gym. I lifted an 8 lb bar and worked out with it.  No one ever told me that I should start slowly and workout with 1 lb weights for a few weeks then progress.. Well 2 days later my entire left arm swelled and I had horrible pain shooting down my arm. Welcome to LE..

I went to therapist who fitted me for a sleeve and gauntlet and gave me excercises. She said my case was mild but she was not the one who stayed up 3 nights in so much pain that I could not fall asleep. MY LE  is worse in the heat as it is for most of us. I hate looking at a swollen arm all the time.

I went back to the gym and quite honestly I think it is helping me more than any sleeve, massage or meds.  I worked out 3 days last week with 1 lb weights and light cardio and I swear my arm feels better. It is still swollen but I don't have pain at night.

I am not sure if this would help anyone else, but it is working for me. 

Njb, I started lifting weights in the gym, with a trainer who went to a workshop about weightlifting for BC survivors with or at risk of LE. We are following the PAL Protocol very closely. I began with the one pound weights several months ago, and now I am doing chest presses with 15 pound weights in each hand, biceps curls with 12 pounders, etc.



And....my arm feels much better than when I started, and I too think the lifting has helped quite a bit. I am quite aware that as I heft heavy objects such as suitcases day to day, that it is easier than before, and in fact I barely take note of objects that before, would have made my arm ache within hours. So my conclusion is that I am not stressing my arm in many little ways throughout each day anymore, so my lymphatic system is not constantly coming to the rescue with extea fluid in response to perceived stress.



Not to mention that it feels great to feel strong again! I worked out extensively before bmx/diep, but the recovery kept me from lifting weight for long enough to lose strength. Even so, starting at 1 pound felt silly, but the weight progressed steadily and all in all, weight training has worked quite well for me and my LE.



Carol

Meggy, you may be able to get some information from socialsecurity.gov.  Also check out Insurance and Other Financial Issues topic.  There is a good thread there on SS.  Hope you find the information you are looking for...

Deb

Hi Ginger....after all the cutting marks believe it or not I figured that out too. I pull it down to under my thumb...no swelling in my hands at all but I don't dare wear my wedding ring and that makes me furious. I love my ring!

However, I still get the cutting marks at my elbow and the top of the sleeve. I will see her on Wednesday and see what she says. If she says I need a custom fit one...forget it I will just keep this one for days that I need it, Haven't worn it in a week now and it's still the same as when I wear it.