Doctor says 'Lymphedema is not painful' - Is it?

Allenroc, A couple of years ago, Binney and I were interviewed for the Washington Post, by a physician, and she mentioned that LE is painful.

Well, there was a letter to the editor by Nicole Stout, who is a PT researcher of LE, stating it's not.

And, we wrote a letter to the editor, that is IS!! And the NLN had to publish an apology and a retraction, and confirm that LE IS PAINFUL: one the important symptoms to follow is aching and pain.

When tissues are swollen or inflammed, they hurt. LE is painful.

I went to the NLN conference a few years ago, and one of the best lectures I heard, a two hour lecture, was from Andrea Cheville MD from Mayo in MN on how to manage the pain of LE....

All too often you'll read that LE is painless swelling. Not true.

Lymphology is a self-described and created field, and Lymphadema People has tried to keep a list of physicians who treat/understand LE

It's outdated, but they list an MD in Santa Monica

http://www.lymphedemapeople.com/phpBB3/viewtopic.php?f=25&t=5&sid=4dfddc3eb5f1695fcb8acde512a5dde5

I have very mild LE but on not so good days, aching, tightness and fullness are clearly there.

I'm sorry I can't answer your other questions, but I can absolutely confirm that LE is most definitely painful!!

I have constant aching in my arm and my thumb is so painful I generally can't use it (typing this with one hand!). I find that these are the worst areas, but are also the areas that stay swollen all the time. My leg and truncal area also get painful, but luckily this is only when I have a flare up in these areas.

To say LE isn't painful is to dismiss it as a condition that's not serious; and yes, compared to other issues we have its true that its not number one on the list. But it's certainly life changing.

Nicky

Allenroc, a pain when you bend the arm is usually an ulnar neuropathy--it's the "funny bone" area and it goes down to the pinkie and ring finger, and if you have swelling it would tend to compress the nerve more. Makes perfect sense that any swelling will physically compress a nerve that is already damaged from chemo.

I get those symptoms if I talk on the phone with my elbow bent.

Add neuropathy to the mix and all bets are off.

My daughter coined a phrase when she had migraine that presented as vertigo and was told she needed a psych consult (at 16): "Denying my reality" and we've used it a lot on this site.

Recently, the same daughter had a question about her optic nerve, and we're at the same hospital: Mass Eye and Ear where their head of otology confirmed the MAV (migraine associated vertigo) and the f##$king neuro-opthalmologist fellow starts to give us grief about how migraine can't present as vertigo, and I said "The head of your otology department at THIS institution diagnosed her: Look it up!!" She was busy trying not to puke as they dilated her eyes, and it turned out to be a false alarm. There was documentation, and yet, once again, some uninformed moron wanted to deny her reality.

I have been suffering with arm pain for the past 6 months.  I went to my breast surgeon who gave me a whole 5 minutes of her time to tell me I did NOT have lymphedema.  She didn't feel my arm, she didn't do any measurements, she did nothing.  She told me I probably had fibromyalgia.  So after being extremely upset to the point of having a nervous breakdown, my husband insisted I see my family doc.  My family doc sent me to PT and they told me I DID have lymphedema and I've now been in PT for a month.  My arm has fibrous tissue all through it and does not swell very much but it is a constant pain.  I have no use of the arm right now and waiting for disability paperwork to be complete because I can no longer work.  It's sad when my own breast surgeon won't take an extra minute to listen to me and I have to be diagnosed by my family doc.