Topic: What Does Lymphedema Pain Feel Like?

Apr 20, 2010 12:08 PM NatsFan wrote:

Like dream, I didn't have pain in my LE arm, but more like a heavy feeling.  However, when my LE therapist did her initial exam, she also found I had a shoulder impingement in that same shoulder - she said that's not unusual in b/c patients, especially those who have had mx or other extensive surgery as we get in the habit of hunching to minimize pain.  That did give me some shoulder pain, but the pain was from the shoulder impingement, not the LE.

Also, neurogenic thoracic outlet syndrome can cause shoulder/arm pain - it occurs when the nerves that run between the clavicle and the first rib get pinched between the two bones, causing pain.  TOS is not b/c related - I just happen to know about it because my dh was diagnosed with venous TOS last year and needed surgery. Neurogenic TOS usually doesn't require surgery, and proper PT can give a lot of relief. 

As for LE, just to be on the safe side, you may want to get a referral to a qualified LE therapist who can give you a thorough exam.  Even if you don't have LE, the therapist can fit you with a sleeve and can give you info on steps you can take to prevent LE. 

Good luck!

Apr 20, 2010 02:00 PM NatsFan wrote:

Node removal of any sort disrupts your lymphatic system and the flow of the lymphatic fluids, increasing the risk of LE, so getting checked out is a good idea.  My guess is, however, that the more nodes you have removed, the greater your risk because of the greater disruption to your lymphatic system.  So you  may be at a lesser risk than those of us who needed a full axillary node dissection.  But it never hurts to be prepared - even b/c women with no nodes removed have developed LE, so getting checked out and getting an education from an LE expert is a good thing to do. 

Let us know how it goes!

Apr 22, 2010 12:45 PM otter wrote:

Mine is mostly like Michelle's -- it's a dull, aching feeling, with a sense of "fullness" or "heaviness" that's difficult to describe.  Sometimes there is a surprisingly sharp, but not severe, pinprick, kind of like the shooting pains others have mentioned.  I seldom have the pins-and-needles feeling.

My LE "discomfort" is really easy for me to detect.  Nowdays I mostly feel it in my left upper chest wall, where 2 of my 3 sentinel nodes were located and where the mast/SNB drain tubes led and exited my skin. 

Eighteen months ago, I also had "Stage 0" (subclinical) LE in my left hand and forearm.  It was really mild -- not measurable by bioimpedence or tape measure.  But I could feel that same dull ache and "thickness" in the base of my thumb and forefinger, my thumb-web, and back of my hand, as well as in my wrist and forearm.  Look at the new photos of LE that were posted on this forum a few days ago -- I saw some of those changes.

The "discomfort" and mild swelling comes and goes.  I can easily feel it coming on after I do something stupid, like yard work or cleaning or wearing a bra without my lateral Swell Spot.  So, I take action and back off, and it goes away within a few hours or overnight.  Last summer, we spent 2 months camping in Montana, Wyoming, and Colorado, mostly at elevations above 7,500 or 8,000 feet.  I wore my sleeve and glove for the first few days; but then I decided to wean myself off the compression to see what would happen.  I did feel that now-familiar achiness in my arm and chest wall lots of times, but I did MLD and all the other stuff (low salt, lots of water, stay cool, take it easy, don't wear tight clothing, put that sleeve & glove back on for awhile) and the feeling would disappear.  I never did see even the slightest indication of swelling at those times.  So, for me, the sensation of "discomfort" precedes the visible changes.

I am really, really lucky my LE isn't more severe.

otter

Apr 22, 2010 09:53 PM Binney4 wrote:

KC, your tourniquet description is great.

You sound good, KC!
Binney

Apr 23, 2010 09:08 AM, edited Apr 23, 2010 09:10 AM by kira

KSchreve, I'm so glad the surgery went well! Too bad you have to fight the nurses.

Just FYI--I'm affiliated with a hospital system that includes a women's hospital, where I had my surgery, and when I go on-line to check on results, an info sheet comes up about the patients, and in bold pink letters there is a category for "Restricted extremity"--just noticed it yesterday, and am so glad it's official.

Hoping for a smooth and rapid recovery.

Kira 

For me, LE pain feels tight, achy and just sore. I can see it--the area is "whiter"--my LE therapist calls her sister in law's severely LE leg, "the dolls leg" because all that lymph makes it white and waxy looking. It's subtle and it shows up and reminds me to be careful. 

May 1, 2010 11:28 PM o2bhealthy wrote:

CAW - Yes, see a LE specialist the sooner the better...it is always better to seek treatment sooner to better manage the LE and hopefully keep it from getting worse.

Best wishes!

May 2, 2010 02:00 PM CAW wrote:

Thanks for that info.  kcshreve.....with you saying that nodes should not be swollen with LE, I think that's been the problem with the Dr.s that I've talked to.  When I tell them of the pain & tenderness plus the fullness feeling, they palpate the nodes and say....."there's no swelling so don't think there's anything to be concerned with"!  How frustrating this can be!  I'm making an appt tomorrow to see a LE Specialist.  The ladies on this board are much more informative than the Dr's......I guess because of "Been there done that"!!!!!  Thanks again.....

May 11, 2010 08:55 PM Meggy wrote:

Forget doctors....unless they happen to have lymphedema like my oncologist.  The rest are idiots.  Just get a referral to a lymphedma therapist out of them.  I've had a doctor tell me there is no such thing as truncal lymphedema...ya right.