can you describe what truncal LE pain feels like?

minxie

Hey guys, I posted on the before/during/after surgery board and worried board so I won't spam here too - but basically I'm trying to figure out what this horrid shoulder/rib/back pain I'm having 1.5 years out from node dissection/mastectomy/reconstruction is. Only swelling seems to be between recon breast and armpit. But pain pain pain. If you have truncal LE pain, could you please describe what and where and how you feel? Thanks!

Leah_S

Minxie, I don't have truncal LE, but I think you'd get the best answers if you post on the LE forum.

Best of luck.

Leah

kira66715

Minxie, I don't have truncal LE, but the women who do, describe a lot of pain:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Don't worry about posting this on a couple of threads, I think you'll get more advice on the lymphedema board.

You might consider an evaluation by a lymphedema therapist--you'll need a referral from one of your doctors--truncal lymphedema is hard to diagnose, because you can't measure it, you just have to be experienced and feel and see it.

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Sure sounds like it could be lymphedema--and it can be treated.

Kira

o2bhealthy

Minxie - you might want to ask this question on the LE forum.

I have bilat arm and truncal LE. My back, side and breast feel very heavy, achy and have pins/needle like pain. I also have sharp pains and I feel bruised when touched when I am having a flare. I am unable to go more then an hour without compression because my foobs hurt too much. I cannot wear 'pretty' or regular bra's because they block the flow my lymph, cause flares and I am miserable within a few hours. I wear compression binders, cami's and bra's just to feel some relief.

I also have PMPS (post mastectomy pain syndrom) and have finally found  a Pain Mngmnt doc that has been able help calm the overstimulated nerves. I still have LE pain but the nerve pain has diminished considerably.

Several women on this site have put together a web page on LE. Here is the link for truncal LE information http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

The only way to be sure if you have LE is to see a qualified LE therapist, here is a link o how to find a QUALIFIED LE therapist

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

and what to do to help with pain while waiting to meet the therapist

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm

I hope you can find answers and relief soon.

Binney4

Minxie, hi,

I'm really sorry for the pain and anxiety, and hope you get really positive, helpful answers from your healthcare team soon.

In answer to your question about truncal LE pain, besides the sometimes achiness and feeling of fullness, mine is a nerve-type pain, doesn't respond well to any of the usual pain meds, and it tends to move around a lot, so it can be hard to pin down. I'll try to put a finger on the place where it hurts, but if I do it just seems like, no, that's not quite it, it's over there. And so on. Before I saw a lymphedema therapist who really knew what she was doing and diagnosed it for me, I thought I was cracking up. With therapy (and continuing self-care) it's controllable, and that's worth gold to me.

Sure hope you soon have real relief!
Binney

minxie

I'm so sorry guys - I posted this on the wrong board. My apologies. Thank you all for the wonderful advice though Kira, binney and o2bhealthy! I will post this again on the right board -