Diagnosed with tendonitis but turned out to be lymphedema?

codavis · September 2013

This topic has probably been covered, but there's so much activity in the Lymphedema forum, that I thought I'd ask outright.

I started having pain in my arm in June. My oncologist said it was an overuse injury, and that it should get better. After a month, I went to my primary care doctor who said it was tendinitis, and that I should quit lifting weights and biking for a month, and that I should take 800 mg Ibuprofin every six hours for two weeks to alleviate the swelling, and hopefully reduce the pain. I did all that, and the pain in my arm got worse. I went back a couple weeks ago, and she thought it might be nerve damage or a pinched nerve. She said if it was tendonitis, it would have resolved by now. She suggested I go to physical therapy for a month to see if that would help. I went to PT, and he said it's lymphedema. It's been almost three years since my last surgery and treatment ended, and I've complained since then about pain around my ribs, mastectomy site and underarm. And I've told my doc that it felt swollen--he said that it would take a while to heal after the surgery. Even when I told my onc about pain in my arm, he said cancer recurrence below the elbow is very rare and it's most likely tendonitis. He never even examined me!

The PT also said that stoppping my excercises is what made the lymphedema worse and caused more pain in most of my arm and chest. Ugh.

Has anyone else had lymphedema that was originally diagnosed as tendonitis?
Does lymphedema hurt? It hurts to grab things or shake hands--which is why docs thought tendonitis.
I also have lots of pain in my sternum and collar bone. Anyone else have that associated with lymphedema?

Finally, if you have lymphedema, who manages your treatment? Is it the oncologist, breast surgeon or primary care doc?

kira66715 · September 2013

Unfortunately, lymphedema does hurt. There have been erroneous reports that it doesn't, but it DOES.

The early signs of lymphedema are often an aching. And truncal/breast LE (lymphedema) can hurt also.

This totally sucks, but you'll get it under control.

Personally, my PCP writes my scripts, but acknowledges she knows nothing about LE, but none of my other doctors ever examine me or treat me for LE. Ironically, I needed a hyst due to tamoxifen, and my gyn oncologist is fascinated with LE and examined my arm constantly, and she made sure I could go into surgery wrapped and is a strong support for me. But her involvement in my care is over now.

I'm going to refer you to the site we created, Stepup-Speakout, and on the home page, on the right there are great handouts created by Carol on exercise and LE

It's a steep learning curve, but you'll get there.

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

Keep asking questions

Lainey64 · September 2013

Yes, LE does hurt and pretty bad sometimes. My arm was really painful even to the touch and I thought maybe I had pulled something. Who knows, maybe I did and that's what triggered the LE. But whoever says that LE is not painful, obviously has never had it! I'm so sorry this is what it turned out to be for you. When I was first diagnosed only a few months ago, the pain was pretty bad and now it's not anywhere as bad as it was but it still aches mostly in the evenings when I sit down to relax. Good luck to you! Again, I'm sorry

Kicks · September 2013

For SOME - LE does cause pain BUT not for ALL! I have never had pain associated with my LE. I do feel some pain in that arm but it is due to the damage (and subsequent surgery) from doing "a good job" of breaking both bones in wrist last Jan. I also have (been there for YEARS) some arthritis in both hands and wrists that is 'uncomfortable' at times when its cold or in low pressure weather. These are not LE related - its just being old and the wear and tear of an active life.

We are each so unique so there is no "One Size/Way Fits All".

Dejaboo · September 2013

Im sorry they misdiagnosed your LE.

My LE is very painful...Especially my Trancal LE...vs my arm LE...The arm pain does flare up. But my trunk pain is pretty consistant & never leaves. But I dont have alot of swelling as a symptom- wierd

codavis · September 2013

Thank you all for your reponses. Somehow I missed the posts.

Update: This week I've had constant pain on one very specific spot in my forearm, which is where the pain started four months ago. I've also had pain/tightness in my chest on the right (cancer) side. It hurts to bend over to pick something up and when I reach for something. I saw my breast surgeon today, and he's not convinced that it's lymphedema. For one thing, there's no swelling. He measured my upper and lower arm on both sides and said there's no difference. However, he doesn't know what it is and said before we do a metastitic work up, he wants me to see the head of the physical therapy dept at the hospital. He can determine if it's lymphedema or not, and we can go from there.

I'm so frustrated!!!

Does lymphedema pain affect a general area (i.e., the whole arm)? Or can it be a small spot that hurts?

AryaS · September 2013

I think I am right there with the OP. I had my surgery in April of this year, my surgeon took the fat pad and lymphnodes from my armpit and my arm has hurt off and on ever since. My PT measures my arm regularly and my unaffected arm at times has actually been bigger than the affected one. My PT says I am still healing but recommended a sleeve which does help but is not a cure for the pain. I do lymphatic massage several times a day and that helps too but it is not perfect and I still have pain. No one seems very concerned-except me!

So do I have it or am I still healing? I have no idea. It is extremely frustrating.

codavis · October 2013

Still waiting for the PT specialist to call me. The pain is still there, and no swelling as far as I can tell.

carol57 · October 2013

codavis, my whole arm aches when the LE is bugging me a lot. Mostly it's the upper arm, but I find that when I've done too much with my arm, or just when the barometric pressure changes or it's hot and humid, the whole arm aches, with more pronounced pain in the upper arm. I can tell when fluid migrates to a spot on my back just from feeling a burn-y, achy sensation. Then when I look, sure enough the area is slighly puffy. My LE is usually quite mild and since I began wearing compression during activity and on achy days, I rarely see any notable swelling. I can see some puffy spots and they feel different if I touch them, but the tiny swelling is not obvious to others. So for me, ache and somtimes sharper pain are the primary LE symptoms. Nothing deep and sharp like you describe. I sure hope you hear from that PT soon so you can get to the bottom of this.

codavis · October 2013

carol57: Thanks for your response. I appreciate it.

I called today and left a message.

ahdjdbcjdjdbkf · June 2014

I have pain with my LE and the worse is in my forearm. It gets bad at times. I get pain in my sternum that scares me but most likely it is linked to radiation, costocondroitis, or lymphedema. Still I will tell my Onc about it at my July check-up

bd68 · January 2017

Codavis I hope you still can see these posts. I have the same symptoms and wonder what you were diagnosed with? I'm worried. Thank you!

Moderators · January 2017

Hi bd68,

Sorry that your breast worries have brought you here but we want to send you a warm welcome to the BCO community.

Just to let you know, this thread has been inactive since 2014 so you may not receive many or any responses to your post here.

Here's a link to a very active thread on Lymphedema below:

https://community.breastcancer.org/forum/64/topics...

Wishing you well,

The Moderators.

Diagnosed with tendonitis but turned out to be lymphedema?

Comments

Categories