Does your Lymphedema Hurt?

Meggy, yes, LE is sometimes painful. Not always though, which I think confuses doctors (and sometimes even therapists). For a long time the prevailing belief even among therapists was that if there was pain with LE then it had to have some other cause. Now, though, it's generally understood that for some of us LE can be quite painful.

There's the discomfort of swelling, of course--the achy, heavy feeling. But there's also sometimes an element of nerve pain--tingling, burning, pins-and-needles, or outright disabling pain. It can seem to move around, too, so it's hard to pin down (which makes some doctors think it's all in our heads). The usual OTC pain relievers don't do much for it but, as you say, reducing the swelling does. Which is why there's a theory that the swelling somehow presses on nerves and that's what we're experiencing.

Thank goodness we have the tools to reduce the swelling, because otherwise this would be a truly disabling. Hope you're feeling better and managing to keep the swelling down--full time job, isn't it?!
Hugs,
Binney 

No pain.

Meggy,

What you are describing is very similar to what I experience.  And of course Binney's description of it is spot on.  Why some people have pain and others don't is a mystery. And then the whole business of is it nerve pain, or not.  I have found that wearing a compression sleeve during the day and doing MLD brings me relief.  I wrap at night when I have had an very active day.  And drink lots of water and avoid salt.

Cinnamonsmiles,  I'm not good at posting links, but check out stepup-speakout.org for tips on how to find a LE qualified therapist.  The site was put together by several of the wonderful ladies here.  So many of us have horror stories about untrained therapists, but a therapist that is well trained and qualified to treat LE can make such a difference!  Hopefully you can find someone who really knows how to treat LE.  Let us know what you discover!

Deb

Meggy, I don't work outside the home. If I did I'd have had to ask for "reasonable accomodations" to manage the LE. I've had to learn to use a left-hand-only keypad because I simply can't type or write with my right (dominant) hand without almost immediate swelling and pain. I also can't cut much with a scissors and I've given up crochet and spinning wool as well. As Katie Schmitz discovered with her weight-lifting study (but doesn't much mention in writing it up), LE is variable, and for some of us it is debilitating no matter how determined we are not to let it interfere with our lives.

So while I encourage every one of us to do as much as we can of our favorite activities and make the adjustments we need to help us carry on, the reality is that sometimes one activity or another is a flat-out loss. Not the end of the earth, certainly, but it does take some creativity to find substitutes for the things we can no longer do -- and it takes time and effort to grieve our losses.

Hope that's not too much of a downer, but it is my reality. I have a grandson who is a dwarf and has suffered endless surgeries on his bones to strengthen and support them, including months in a "halo" of metal attached to his skull to stabilize his neck. His activities are severely limited and will always be, but even now as an older teen his spirit is indomitable. So I have a lot to live up to in that department, and his excellent example to guide me. I'm a rich woman!

Hugs,
Binney
(P.S.-Did I mention I hate LE?!)

Meggy- I was just dx with LE and pain was the first symptom I noticed. It scared me at first because it was only in my left arm which they say can be a early warning sign of heart issues. (Never thought I'd wish I was having heart issues rather than this **** LE!)



Cinnamon- Is it possible to travel farther to be seen by someone qualified just to get a definitive dx? If it is LE it's better to get dx before it progresses.

Momine, I cannot recall the exact statistic, and I hope Binney will correct me if I'm wrong, but I believe I read that the limb can have up to 20% added fluid before the increase is measurable using external methods, whether tape measure, water displacement or even perometry. So no wonder we feel it before it's visible.  Using perometry to measure, my LE arm is only about 3% bigger than my non-affected (but dominant) arm now, after months of care that includes MLD and wearing compression when I'm flying or doing stress activities.  But wow, can I ever tell by feel when fluid is starting to pool. Ache, tenderness, tingle..a veritable potpourri of odd sensations.  In my truncal area, where measurement tells us nothing, it feels hot and tender, and there I can sometimes actually see the swelling.

I've grown accustomed to wearing compression shirts or camis all the time, but now with hot weather arriving, I cannot imagine such a thing.  I do plan to search for a bathing suit that at least compresses the truncal area, which means a pretty high-cut arm hole.  Or maybe one of those 1920's bathing suits? (not!!)  Even if I'm not swimming, wearing shorts over a nice, compressive suit may be more tolerable than wearing a cami under clothing.

 We sure have our work cut out for us, to get the doctors to understand. 

Carol 

Becky, Hmmm.  Great idea!  Big undertaking!  Maybe too big. But like the wonderful cami reviews on SUSO, we sure might come up with a review site with links to great clothing products that simply work for LE (like bathing suits that compress and have higher-cut arm holes). (And on one thread here, Kira mentioned clothing that's impermeated with permethrin to repel mosquitos, and of course the continuing chatter about compression shirts that don't have beacon-like logos or necklines that peek out of every item in the closet!)

Good morning, all!

Check out the swimsuit section at StepUp-SpeakOut for some fitting tips:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Swimming_and_LE

Carol, the figure I was told was 30% more fluid in the tissues than is normal before swelling is measurable--quite a lot, but it explains why we can feel so many different sensations. One of the real problems we have with getting the attention of the medical community is that the lymph system is not only slow and stupid, it's also shy and retiring. Much of it is invisible to the naked eye, so it's gone unstudied through the ages. And now when something goes wrong it waits to be noticed until the whole area is sopped and heavy before it starts to swell. Then we have this whole problem of trying to convince our doctors that LE is not "all in our heads."

Hang in there and speak up, fellow lymphers! It's not us, it's our mousy, wall-flower lymph system that's causing all the professional skepticism. If we want good care (and better clothing products) we need to keep making all the noise we can.

Onward!
Binney

Oh, forgot to add, if anyone has any connections with a college or junior college clothing design program, I think that would be a good place to start asking about design and production help. Sandra Tullio-Pow's design stupents at Ryerson University in Ontario came up with some specific LE clothing and accessory products several years ago, but they've stopped producing them. There was a beautiful, warm cape for winter weather when your arm is wrapped and won't fit in a coat sleeve, a lovely artist-type shirt with roomy but graceful sleeves and magnetic "buttons" that you can fasten easily even with gauze-wrapped fingers, a modular purse with wide shoulder strap and a loop in the back so you could put your arm in it and it wouldn't hang down. Interesting stuff. If we could get some design students interested in our unique design needs they'd sure have plenty of suggestions and feedback here!

Biggest challenge: nightwear that looks sexy with a fat, clumsy, bulky, ugly night garment.
Binney
 

I am so pleased to have found this thread. My breast surgeon says I do not have lymphedema, but crazy enough, he suggested i see a lymphedema trained therapist and she says I do have it.

I do have pain, this feeling of tightness or congestion is my first clue, and then comes a sunburn feeling.

Questions :

-I note mild swelling after I walk every day, should I be wearing my sleeve to walk, and gauntlet?

-Are we not supposed to swing our arms when we walk? That action seems to make me feel worse.

I thank all of you for your comments, I have got to thinking the lymphedema was all in my head too at times.

One thing I have never seen discussed before was after my surgery (mastectomy) my arm was soooo heavy for weeks... but everyone said it was normal and would go away. I never heard anyone else describe this immediately following surgery.

Thanks!

Pink isn't it a relief when u know u'r not alone, sometimes I think I'm creatin pain myself-u go crazy. I have it all over, but I'm also overweight and I think why can't I just put a pin in it like a balloon and it will empty. LOL And when it does get itchy, u can't feel any acratching at all so u itch forever. I have it in both arms and legs so when I have all my "gear" on my kids call me "mummy"-I'm sorry any one has to have any of this from the beginning. Oh well

Crystal,

My arm was heavier in the beginning, it feels better now.  And I feel much, much better when I wear sleeve and gauntlet for walking.  To keep my hands from hanging down, I also use walking poles (cheap Wal-Mart variety.) In official-sounding parlance, I say they engage my core muscles, and distribute weight more evenly on my joints.  My children call them "spider walking poles."  My husband calls them "canes." But they say these things from several feet away because the poles have very useful carbide tips.

Crystal--I wear garments while walking.  I also do not let my arms hang down but bent at elbow and swing forward.  I then pump my arm every 10 minutes.  Put arm up in air and pump down fast.  If I let my arms hang down my hand and LE arm swells. 

Kate-- Good news!  Keep going forward!

Camillegal--Mummy is funny.  When I was wrapped I felt like the Michelin Man!

I really don't understand how any medical person could say there's never pain with lymphedema. The earliest sign for me was the ache I'd get. It wasn't in one spot, and this was before any swelling appeared, but I knew what it was and massaging relieved it.



Recently, with the advent of swelling in my hand and lower arm, the pain has been in my fingers. I am quite certain the lymphedema is complicating the arthritis I have had in those joints for some time. Stiff, tight, and painful to bend, even though the swelling is now back down to subclinical level.