Could this be a warning of developing lymphedema? Sore achy arm

wallan

Hey:

So I have had bilateral mastectomies and reconstruction with implants. My exchange surgery was 7 weeks ago.

Anyways, on the right side 14 years ago, I had ALND - 18 nodes removed and a mastectomy. No reconstruction then. No problems.

On the left side, I was dx with new stage 1 primary one year ago. I had another mastectomy and only a SLND which showed negative nodes.

Now my reconstruction both sides is done. Yesterday, at around 8 PM my left arm was achy. I thought it was just in a weird position for some time the way I was sitting or something. But by bedtime, the whole arm war really achy. And if I typed on my computer, I would get the odd shooting pain into the top of my hand. I took some tylenol and went to bed.

This morning, my arm is still very achy, especially up around the armpit area. And it feels weird. It feel weaker somehow, but not really. I just had my three month check up yesterday afternoon too and was thoroughly checked over. No lumps or swelling under my arms at all. So this is a new thing.

Can you get lymphedema when you just have a SLND? I would think I would get lymphedema on the other side where I had more nodes removed?

Or could this be something else?

Any experience? Any suggestions?

wallan

gb2115

You can get lymphedema after a sentinel node biopsy. I had 3 nodes removed and am now dealing with some truncal edema.

Can your surgeon refer you to a certified lymphedema specialist for expert evaluation? They would be your best bet for determining if that's what's going on.

wallan

Thanks gb2: I did call my PS and my MO today.

The PS nurse answered and said she would talk to the PS and get back to me. But she hasn't yet.

The nurse practitioner at the cancer clinic told me I should go to the ER because something has changed. She said they didn't really know what was going on, so its best to get it checked out. I was pretty shocked. I haven't gone to the ER yet. That will be a 6-8 hour wait at least, and then seeing the doctor and tests will be another 4 or 5 hours. If something develops or gets worse, I will go. But right now, I think I just need to see a doctor.

The achiness is better tonight. But I still feel a bit of weird feeling under my arm. I am going to go to my GP tomorrow or at least make an appointment.

Sigh.. I hope its not lymphedema...

wallan

Falconer

Wallan, I've noticed increased tingling and arm pain when the weather changes here in the NE. I haven't been diagnosed w LE so I'm attributing it to the surgeries and the way the body always is cranky when there's that injury and the weather thing. I hope you'll be ok perhaps after the weather improves?

wallan

Thanks Falconer.

It may be weather changes. Who knows? I am on Dr. Google and it seems arm pain or arm bothering you after breast surgery is common. Even years later. And its not necessarily LE. Its just weird to me because I didn't have any arm problems the first time and my cancer was worse, I had more lymph nodes removed and I was warned of LE. Maybe its because I am 14 years older and my body is saying "ENOUGH".

wallan

hugz4u

Welcome all. Yes you can get LE lymphedema from slnd. You also can get it from any type of surgery that disturbs your lymph system. The more removed the higher the chance. You can get it right after surgery or 100 yrs later!

Emergency probably won't know what it is or either your MD because they spend about 15 minutes learning about the lymph system in sch. Most docs think you have to have a huge arm to have LE. Not true as I proved to my doc with my small arm.

True some pains and weirdness could be from your recent surgery's but also tingling, heavyness, achy are all signs of early lymphedema or anything abnormal feeling. What you need is a well qualified lymphedema person to see you to determine your status. It's wise to get educated and a baseline measurement of your arm and that way if you do develop problems your prepared. Also if caught early it's reversible otherwise it's a nasty life changing beast.

Go to stepup-speakout.org. The best site our girls developed to get educated and to find a therapist in your area.

A good indication also is if you have a decent arm in the morn upon wake up but then it swells or gets achy as the day goes on.

I sure hope it's only post surgical ache and pains but if not we are here to Suport you.

wallan

Thanks hugsz4u:

I am going to the doctor today. I never went to the ER yesterday (thinking "how ridiculous it is to wait hours and hours for what?"). My family GP is usually pretty progressive so I will insist on being evaluated for LE.

I will keep you posted. BTW, I did go to the website and it is full of info. Thanks again.

wallan

wallan

So I went to my GP. He is on holidays, so I saw his nurse practitioner who really gave me a good exam. (I really am starting to like these nurse practitioners!). Anyways, she said my vertigo is a concern and after she did a clinical neurological exam, she said I still seemed unsteady. I do have a bit of lightheadedness and a bit of nausea, but its way better than it was last week. Anyways, she said if it gets bad again or anything changes, to go to ER.

Then she looked at my achy arm. She thinks I have irritated the ulna nerve which she says runs from the shoulder to the elbow down the back of the arm. Its likely from doing too much after my exchange surgery which was 7 weeks ago. She said, heat, rest and no lifting should resolve symptoms.

In any event, she told me to come back and see the GP early next week, especially if I am not 100% from the vertigo/nausea.

So, I feel sort of bummed like I am some sort of chronically ill person now. If its not one thing its another. I just want to feel healthy.

wallan

ShetlandPony

Gosh, if by chance it is LE you would not want to apply heat...

hugz4u

yup heat not good and watch hot tub and sauna and steam rooms. I do go in hot tub but only to waist/thigh level for five minutes or less. I’ll dip under to warm up but never sit under. Hot temp for lymphedema is not good.

wallan

So heat not good. Bummer. I love soaking in a hot bath. I haven't done it though since last year.

wallan

wallan

So.... my left arm is now swelling. I was doing yoga this morning, and I noticed it. My DH even said, "your arm looks swollen" - its no longer achy or heavy feeling. Just swollen or puffy.

Looks like lymphedema.

BellasMomToo

Could it be a blood clot? After my final chemo my left arm started to feel tingly. I thought I was developing neuropathy. The tingly feeling went away then my arm started to feel heavy. Then I noticed that my arm was a little swollen. My MO sent me in for a US and the tech found a blood clot near my port.

Don't know which is worse -- blood clot or LE. Hope you get answers and feel better soon.

gb2115

Sorry you are swelling now...have you tried elevating your arm?

Definitely get re-evaluated and hopefully get into see a lymphedema specialist. :-(

wallan

So I was re-evaluated today. I was diagnosed with lymphedema.

I am now being fitted for a compression sleeve and setting up for physiotherapy sessions. i am to wear gloves whenever I do anything it seems, and be very careful not to get bites, scrapes, pinpricks, etc on my affected arm. Sigh....

The specialist tried to reassure me that lymphedema rarely goes beyond early stage, which I am. Is this the experience here?

I have a heavy lifting job and travel alot. I asked if I could do my job, and it there was no definite "no" but I was cautioned not to suddenly lift very heavy things, to be sure to wear my compression sleeve at work and to limit travel. So, I figure, maybe I can no longer do my job.

sigh...

wallan

Outfield

Wallan, I'm sorry to hear you have to deal with lymphedema. I was so panicked when I first realized it. Mine has been about 7 years and it hasn't progressed. I don't know what the stats are, but just take me as an example of "yes, it's possible." The swelling goes up sometimes, but I'm always able to bring it down again. I wear a sleeve pretty much all the time, I use a nightgarment, and I know how to wrap when I can't fit into my custom-fit things. That doesn't happen often, but it's not never so it's a really good skill to have. I have gradually gotten back to doing almost everything I would have done before. My exception is getting my arm into hot-tubs (bad experience with cellulitis after my one indiscretion), but by hot tubs I don't mean hot baths. I'm very active and do a lot with my arm. I don't very often wear my compression glove (will go years in-between), but I've gotten much better about using work gloves.

You will learn what bothers your arm and what doesn't. Everyone's lymphedema is individual. The main thing seems to be to gradually work up to whatever it is you want to do, not to jump into a new stress on your arm all at once.

Someone above mentioned https://stepup-speakout.org which is really an excellent, well-researched website.

wallan

Thanks Outfield:

Your answer is reassuring. I have looked at the stepup-speakout.org too. Its a bit overwhelming though, all this info about exercises and cellulitis and such. I guess that is what scares me the most - cellulitis. And its a bummer about the restrictions on hot tubs and saunas and steam baths which I love to partake in once and a while. You know psychology - for me if they say bad idea, I want to do it more. LOL.

Also, the advice to rest your arm and elevate it when it bothers you. Is this forever? Right now, it bothers me (achy) most of the time and Im not doing much. Of course, that is partly why I went to the doctor in the first place. If I elevate my arm, the puffiness does go away. But the heavy, achy feeling under my arm stays. I guess compression will help with the achyness? Again, is management (resting the arm) to keep swelling away?

wallan

Outfield

Wallen, right now, without knowing how to wrap or having fitted garments, or knowing MLD, you don't really have the core tools those of us who have been managing lymphedema for a while use to deal wit it. I don't remember elevating much at all after the time when I was in limbo knowing I had it but waiting for appointments to get tools to deal with it. Elevation works, but it's inconvenient if I want to be getting on with my life. I use what's most convenient (wear a sleeve all the time, use a night garment all the time) and it's adequate probably 95-99% of the time. Actually, it's been probably a year since I last had to wrap or elevate. But that's me. Some women wrap more often. There was a woman who used to be on here all the time who had a job where she couldn't wear a sleeve, so she wore nothing during the day and wrapped at night. That's more effort at night than my night garment (goes on the same basic way as a sleeve), but for that price she gets days without a sleeve. It sounds like your therapist hasn't wrapped your arm. Ask her to do that, if only for a few days. It really helps. It's also tremendously empowering to have the supplies at home and know I can deal with a flare by wrapping myself. If she's not planning to teach you, make her do it. If she doesn't know how to do it, then she's really not adequately prepared to be a lymphedema therapist.

Also, this is totally just me, but heat like a hot tub doesn't bother me. Heat as in a hot, hot day where I'm miserably sweaty for a long time but not doing much sometimes does, but most of the time doesn't. You'll figure out what you can and can't do. My fear of hot tubs is based on cellulitis, which I've had a few times, so I just leave that arm out of the water.

You won't have to rest your arm all your life - the recommendation is actually to use it, but to work up to whatever you want to do. We are so lucky not to be living in the times when they told women not to lift anything, ever with that side. It's been shown by research that exercise, including things like weights, is good, but you just have to start low, go slow with it.

For me, yes, the pain went away with treatment and getting the swelling down.

wallan

So I got a compression sleeve today. It was custom fitted.

It was put on me at the medical facility. It feels very weird and tight. I assume that I will get used to it?

wallan

hugz4u

Good thoughts outfield. Yes we have to experiment.

Wallen, Start slowly. Put on first thing in morn when your the smallestfor couple hours then take off. Try increasing a couple hours a day till you get full day. If your elbiw create hurts get some antichaf stix the runners use or thin silicon scar tape. Keep in touch

wallan

Thanks hugz4u:

I did take off the compression sleeve after a few hours. I was not sure if this was harmful or not.

So thank you thankyou thankyou for your suggestion. I will take it slow.

wallan