Could tingling be early signs of lymphedema?

jmb5

I posted on another thread, and someone suggested I post here. I had a BMX 3 years ago, and about a month ago I started feeling tingling (feels similar to when your foot falls asleep) in the area near my armpit. I feel it on the outer side of my left breast, under my armpit and sometimes on the underside of the upper part of my arm, so it's a pretty large area. It is not a "shooting" feeling like I had early on after my BMX, which they told me was nerve regeneration. The best way I can describe this is tingling. It comes and goes pretty quickly, but some days it's off and on all day long. It doesn't hurt, but it's irritating. The woman on the other thread suggested it might be early signs of lymphedema. What do you think?

Binney4

Hi, jmb,

Sorry for this new issue. And yes, it could be an early indication of lymphedema. Best next step after letting your doctor know what's going on would be to get a referral to a well-trained lymphedema therapist (any doctor on your team can do it for you.) Here's how to find one near you:

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

In the meantime, it might help to keep a log of when you're experiencing it and whether it might be related to travel, exercise, unusual activity, or even changes in barometric pressure, any of which can affect lymphedema.

If this is early lymphedema, NOW is the ideal time to get help, as early diagnosis makes managing it much easier. Here are some suggestions of what you can do while you wait to see a lymphedema therapist:

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

Hoping you soon get answers--please do keep us posted!

Gentle hugs,
Binney

jmb5

Binney, thanks for the great information. Most of what I've read talks about swelling in the arm and hand, which I don't have. It's just this daily off and on tingling feeling. This isn't even listed as a symptom on some websites.

debiann

I just went through treatment for early lymphedema. I would describe my symptoms as painful rather than tingling, but I do get some tingling.

Although I didn't think I had swelling, I was surprised to find that when my affected side was measured and compared to the other side, there was swelling. Take some measurements at the top of you arm, above your elbow and at your forearm and wrist then compare those to your other side.

My breast surgeon was no help when I kept complaining of pain. She insisted it could not be related to lymphedema. It was my GP who took measurements and referred me to PT.

jmb5

debiann, can't believe the breast surgeon didn't help. That's kind of what I'm afraid of. Can you tell me about your pain? Wasn't it Inn your arm? What did it feel like

MinusTwo

jmb - My LE is truncal & breast, but I work consistently to keep it progressing to my arm(s). Sometimes I have swelling. Sometimes it's tingling. Sometimes it's painful. I've been fortunate that I can mostly control it with MLD and sleeves & gauntlets for flying or repetitive activity. If you read the links that Binney posted, you'll have seen that LE can develop anytime - even many years later. And no, most surgeons &/or oncologists don't really acknowledge or understand LE. The only one of my 6 docs that really "got it" was my radiation onc, and she sent me directly for therapy. I have a major war everytime I need blood drawn to find someone who will draw from my foot instead of my arms. Please get an appointment with a certified LE therapist (see Step Up links again) and let us know.

GypsySue

It could be an early symptom of axillary web syndrome. Most often caused by surgical nerve damage

Prior to my diagnosis of de novo metastatic breast cancer, For almost 2 years, I had an itchy, tingly armpit but no swelling, redness or pain. Then I developed a visible cord in my armpit. It is called axillary web syndrome and is caused by nerve damage. In my case, the nerve damage was caused by the cancer raging in my axillary lymph nodes.

dtad

I agree it could be a form of neuropathy. My pet peeve....another doc not validating a SE of our treatment! It's bad enough getting it, not having it validated is crazy! We have to be our own advocates and speak up!

ruthbru

Check out the LE suggestions others have listed, but for me the tingly/zappy feelings were nerves growing back......they came and went for years & even 10 years out I occasionally get a zap.

exercise_guru

it sounds like peripheral parathesis.

After I had an oophtectomy, chemo and arimidex both of my hands and arms to.my elbows would get crazy painful numb at night. It was very severe so I went off arimidex ans it mostly went away.

I have heard about something related to a pinched nerve on the shoulder causing upper thorasic syndrome but it's rare suposedly. See if your oncologist wI'll send you to a neurologist. To be honest I had very little help with my experience and was very frusterated.

debiann

My lymphadema symptoms were mostly in my breast, pain and swelling, with some weird tingles too. There was swelling in my arm too, but it wasn't visibly noticeable and I didn't realize it was swollen until measurements were taken.

If your just having tingling with no swelling then it could be something nerve related.

Outfield

jmb5, have you been able to see a doc? It's horrible how few have any idea that lymphedema can cause sensations besides the "heaviness" that's in all the patient ed stuff. I had pain, which I thought was a pulled muscle. If you're worried your breast surgeon will blow it off, is there anybody else you see? I just plowed my way through providers until I had a treatment plan I trusted.

I hope this is not lymphedema, and just some weird nerve thing, but if it is it will really benefit you to jump on it early.

jmb5

Outfield,

I haven't seen my doctor yet. I left a message last week with my breast surgeon's nurse and haven't heard back yet. I have a yearly checkup with a nurse practitioner who specializes in breast cancer, on January 20th, so I will discuss it then. I'm hoping, too, that it's just a weird nerve thing. I guess it seems strange to me that it happened all of a sudden, almost 3 years later.

debiann

Hoping its just a nerve thing too. I still get all kinds of crazy zaps and zings in my stomache area from the DIEP. I also get a tingling like you describe in my leg from a pinched nerve in my back. I see a chiropractor for that.

Be aware however, that the surgeons aren't too quick to recognize that their surgery caused lymphedema, post mastectomy pain syndrome, or any other problem. I couldn't even get an appointment to see my breast surgeon because her nurse determined, over the phone, that I did not have lymphedema or any other problem they needed to see me for.

Check out the lymphedema threads and you will see that most report their surgeon did not take them seriously at the onset. We are told that if only a few lymph nodes are removed we can't get lymphedema, which is totally not true, any surgery, even without the removal of lymph nodes, can change the path of fluid drainage and cause a problem.

Hope you find relief soon from whatever is causing your problem.

link

Here is a link to some info on the early symptoms of lymphedema.

bluepearl

Just wanted to let everyone know that new research is being conducted that indicated lymphedema is primarily an inflammatory disease and they are looking for a cure now. If you lift your arms to your chest and bend them, look at your elbows in the mirror. If the elbow joint isn't sharp and delineated, but smooth and "fat", it is lymphadema. You can usually see quite a difference from the "good" arm. Mine will ache from time to time.

khin75

thank you for sharing. I have done mastectomy for 16 days and concern about lymphoedma.

debiann

jmb5, How are you doing? Have your symptoms resolved or did you figure out what's causing your problem? Hoping all is well with you.

KBeee

jmb, I had BMX in2013 and radiation in early 2015. Just a couple months ago I began getting numbness down the lateral side of my arm and my pinky and ring fingers. I saw hand specialist (who'd done cubital tunnel surgery in2014( because I thought it was from that. EMG showed it was ulnar nerve issue, but the cubital tunnel was fine. It originates in the axilla. I told BS yesterday and I see LE specialist at the end of the month.

ChiSandy

It was my surgeon’s NP who first alerted me to the risk of lymphedema at our “teaching session” a few days before my lumpectomy. She took measurements of both arms, wrists and hands, wrote me a prescription for a sleeve & gauntlet and urged me to fill it before my next long flight three months down the line. And when I first felt some cording in my forearm, I got an immediate appointment with my hospital’s LE specialist, who diagnosed Stage 0 LE (because in the interim I’d felt some upper arm tightness when up in a mountainous part of Sicily) and prescribed six weeks of twice-weekly PT. I’m pretty lucky he’s on my hospital staff, because he’s a founder of LANA and his therapists are LANA-certified. At my last checkup, even though I had gained weight my arm measurements were down, so he declared me in remission and told me I needed to wear compression only for hard repetitive exercise, flights >4 hr, extreme summer heat and sudden unpressurized ascents (such as express elevator trips to special occasion dinners atop skyscrapers).

Binney4

Karen, hello,

You've sure had a journey with this! Glad you'll be seeing a LE therapist soon--do let us know what you discover. Another thought would be to discuss this with your radiation oncologist, since radiation can certainly create nerve issues. Keep us posted!

Gentle hugs,
Binney

KBeee

I see LE specialist next week. I'll report in. As much as Inwould like to mentionit toRO, when my pulmonary function test at work dropped from 105% before rads to 80% 2 months after rads, he said it was likely from something other than radiation. 🙄 Seriously dude, I was not blaming him; I am thankful to be alive; I was just hoping he could tell me if it was likely to worsen, I am quite sure he would tell me it's not from rads. Most likely it is from combination of ALND and rads

MinusTwo

Kbee - I've never heard of an tbtonRO test. How is is it done - blood or physical assessment?

I went yesterday to see the RO & the LE PT. I'm 2-1/2 years out from last rads, but radiation fibrosis is kicking up again. And unfortunately, my truncal LE is aggravated & swollen too. The PT gave me a new treatment with a machine from Finland that does VERY MILD cupping. They are only trying to move the skin - not like the olympic athletes where they are trying to stimulate deep tissue which left the cup marks on the skin. This is MD Anderson, so I don't think it's just hype or bogus. They are trying to break up the hard places and move the lymph along. Some places just felt like a mild pulling. Others felt like when your skin gets caught in a zipper. And yes, 24 hours later it is much softer and the swelling & pain are both less. I'll report again.

gracie22

Agree with the suggestions to get it checked for lymphedema, but I still get (2 years out from BMX with immediate recon) on and off tingling sensations in one breast with no signs of swelling/lymphedema, and though I assumed I would never have sensation there again, I can actually now feel sensation in about half of the area after total numbness for the first 1.5 years. Nerve regeneration can take place over years, and if there is no evidence of swelling or other symptoms (after being checked out with a therapist) it may just be that. I had given up on ever getting sensation back on a big swath of skin under one arm following a post-BMX super infection (implant removed and reconstruction not re-tried on that side at this point), but oddly enough the feeling came back to most of it in the last couple of months. I did not experience the tingle of the breast there, so resumption of feeling was a nice surprise. Here's hoping that your tingles are a sign of better things to come.

KBeee

Minus Two...that was a bad typo! I corrected it! I see LE therapist next week. My BS, MO, and the orthopedic I consulted with (who ordered the nerve conduction studies) all feel that the numbness is likely permanent due to damage present, but we're hoping to minimize its progression. We'll see. I am open to any therapies they want to try. Thankfully my strength and range of motion are both very good. I work on those every day to (hopefully) maintain it.

jmb5

debiann, I finally had my yearly checkup. The doctor thinks it's either nerves or lymphedema so I was referred to a physical therapist. Haven't gotten an appointment yet.

debiann

It's good to hear from you jmb. I thought about you yesterday when I had a tingling like you described near my belly button. I know I'm having nerve regeneration in that area. A couple weeks ago I had what felt like a zap of electricity through my belly. Later that day I noticed the right side of my tummy had a lot more feeling. Weird.

Are you still having the same symptoms? Hope you find relief. Keep us posted.

KBeee

Minus Two, I have been to LE therapist twice now. My right forearm arm had more swelling that I was expecting, so she does think LE is contributing. She used the suction machine on me too! She's using it to try and address LE, as well as using it on my many cords! She also did some massage and I have some stretching exercises to do.

MinusTwo

K-Bee: Thanks for the update. I hope you will continue to get relief. My LE/PT is sick so I won't get see her again until the 8th.