Symptoms of lymphedema

[lizzieepv]

Symptoms of Lymphedema
Is it possible that the only symptom of lymphedema I notice is pain? I am 30, had breast cancer, had a mast with 11 lymph nodes removed, radiation then reconstruction. I have severe pain in my arm, back and shoulder. I thought it was from the temporary implant I had in, but when they removed that and did my reconstruction (no implants) it did not go away. Sometimes I have numbness is my fingers, especially my pinky. I am having a bone scan done tomorrow (Tues) and seeing an orthopedist on Wednesday. Nobody has mentioned lymphedema as a possiblilty, and I think it is because I don't have any swelling. Could this be the cause of all of my pain?

I have three children, ages 6, 3 and 18 months. During all of my recovery periods after surgery and also during radiation I didn't lift them. It has been so hard not being able to pick them up. I have had this pain now since my mastectomy in October of 2004. I take Lortab and Ativan to relieve it, but my oncologist is not happy about me staying on these meds long-term.

Thank you for all of your help.

Beth

[Cassie]

Hi, Beth,
How frustrating! I'm so sorry for the ordeal you've been through with all this. Pain is so difficult to deal with, and I really do trust you'll soon have some solid relief, minus the Lortab and ativan.

I think the orthopedist is a good bet, and I'm hoping he'll take the time to really hear you and figure out what's going on with this. I'd have to say that LE usually presents with heaviness, tingling (numbness), and swelling, though the swelling can be so minor that it's not noticable. Outright pain seems to be more common with "truncal LE" (breast, chest, axilla, back) than with arm LE, so the extreme arm pain doesn't quite fit the LE picture I'm familiar with. My post-bc-treatment chest LE, though, did start with just pain. Or so I thought. It was only after I got into LE treatment and massage for my hand (which eventually swelled) that we realized my chest and back HAD been swollen all along, but I didn't know it because after surgery there was no way of knowing or measuring what it SHOULD have looked like. The new geography created by such major surgery really doesn't give us any reference points to go by, but once the swelling and pain started to disappear with treatment it was obvious.

At any rate, before LE can be considered you do need to eliminate all the other possibilities, so you're on a good course with this week's appointments -- even if we'd all much rather never see another doctor or test for the rest of our long and brillliantly healthy lives.

My prayers for your patience and strength for this week's round of visits. Do let us know what you learn. Wish I were close enough for a hug and a hand with the kids!
Cassie

[cpthomas]

Hi Beth,
I'm so sorry to hear about the troubles you've had since your surgery. I am a lymphedema therapist, and I"d have to agree with Cassie that the symptoms you list do not sound like the typical onset of lymphedema, although each person is different so it can't be completely ruled out. Even if it is not classic lymphedema, I think you would still benefit from the massage component of lymphedema therapy so you might want to try finding a lymphedema therapist near you. It's also a good idea for you to have a lot of education about the risk factors for developing lymphedema so that is another benefit you could get from seeing a lymphedema therapist.

I'm wondering if you've experienced some type of brachial plexus injury. The brachial plexus is a large bundle of nerves that lies just beneath the collar bone on each side, and it can sometimes be involved in the mastectomy surgery. Injury here could cause all sorts of referred pain (like to the shoulder, back or arm) as well as the numbness/tingling you are describing in your hands. I would wait to see what the orthopedist says, and I would ask him/her if you are able to take some sort of anti-inflammatory medication, this might be effective for pain and help reduce the cause of the pain without narcotic side effects.

Please let us know how the MD visit turns out and if you have any other questions. I hope you can get this resolved so you can get back to your normal (probably busy with 3 little ones!) routine.

Christine