Vibration causes Lymphedema?

Onejeno

Hi all, I have some questions.

I had "lymph node sparing" surgery in 2017 on the right auxiliary after having total lymph node removal on the left in 2007.

After the first surgery, I had some lymphedema issues on the left, but nothing major. sleeve worked well, and finally it just stopped swelling or being any issue after about a year post surgery. I didn't think about it again. Now with the most recent diagnosis of cancer, (found in right breast again, and left lymph nodes) they determined that the lymphatic system had "adjusted" and rerouted to my left side which is why cancer showed up in those nodes. I trusted my doctor, who wanted to do this lymph node sparing surgery, taking only the nodes relating to the breast drainage, I have had nothing but issues with lymphedema since. I use a flexitouch pump, I have a sleeve, I get regular lympatic massages. but it is constantly swelling back up. Doctor says its normal. (?!?) Now, almost 2 years out from surgery, it has gotten less frequent. The Right arm is larger, and never fully goes away. but the ache isn't there.

So now my question. I ride a motorcycle. I have found the swelling is worse after long rides. The right hand is my throttle hand, so constantly moving. But I'm wondering if the vibration from the bike is causing the swelling? Or could it just be the extended arm for lengths? It doesn't really occur unless I've been on the bike for a couple of hours, so short rides don't affect it. Any thoughts? I can't ride with a sleeve, because it seems that with the sleeve, it gets majorly painful in minutes. (vibrations again?)

Any ideas? Thanks.

Binney4

Onejeno, even when driving a car the recommendation is to stop frequently and do some arm/hand stretches and exercises.

Has your LE therapist taught you to wrap your arm? That would be something to try when riding. (Years ago here we had a biker who wrapped, but the wrap loosened on one ride and ended up flying out behind her in a long ribbon. Not helpful. From then on she used a length of tubular stockinet over the wrap to keep everything in place, and that worked just fine). Another option might be a "night sleeve," as the fit is more comfortable but often more effective for travel than regular day sleeves and gloves. I use mine not only at night, but for longish car trips and all altitude changes. (If your motorcycle outings involve altitude changes, that's certainly another factor you need to consider. Temperature can also be a factor in unwanted swelling, so lots to think about here!)

I'm so sorry you're having to struggle with this, and I'm looking forward with you to finding a solution that will allow you carefree travel!

Gentle hugs,
Binney

gailmary

Binney, I would be interested to hear if you found any relief from lymphedema caused by riding your bike. I too find vibrations aggravate the lymphedema. I've yet to try a conpression sleeve before I expect vibrations. Its not just lymphedema but also pain right where I felt the pain where the cancer was found in my arm bone 2 1/2 yrs ago. Only when its cold like now that its winter. And coincidentally the same spot I broke my arm 50 yrs ago. In my case vibrations come from operating a big long arm quilting machine.

GAILMARY

Binney4

Gailmary, two things help with this problem, whatever the activity that brings it on. One is wrapping my arm (hopefully your therapist has taught you how to do this?) and the other is to just not push it. I have to limit the amount of time i do activities like that, then take a break. It's inconvenient and sometimes it's frustrating, but it makes it possible to do some of the things I love that involve taxing my lymph system. I gave up spinning wool entirely because I didn't want to take breaks--it was too frustrating to stop the rhythm. But other things I can continue to do as long as I'm willing to slow my pace.

Let us know what you discover that works for you, please!

Gentle hugs,
Binney