So frustrating

Hi Deb,

Sorry you are having to deal with all of this. The good news is you should be able to weight train again. In fact, the latest studies indicate better control of lymphadema with weight training and having strong arms. But right now, you need to take it easy and work on getting the swelling down. I wore special garments, kind of like wrapping, to get the swelling down, compression garments only hold you where you are. I wouldn't even buy one just yet until you get to a good stable arm, ie as close to your other arm as they see possible. The LE PT should teach you how to massage your lymph system and give you gentle stretches to resolve the cording. Once you have that, you can work up from there.

Deb - I weight train and do resistance regularly.  HOWEVER, like Omaz my LE therapist started me out with 1 pound weights - I felt like a total wimp.  But by working up slowly and under my LE's guidance, I have gradually increased my weight to 6 pounds.  Not the 10-12 pound hand weights I used before dx, but certainly up from 1 pound weights. 

It does sound like it's time for you to get a second opinion from another LE therapist who will teach you how to resume exercises, and also teach you manual lymph drainage and other management techniques.  

Diane - please be careful.  I was also given the all clear by my surgeons to get back into weight training after everything healed - it felt wonderful to challenge myself again and to feel my muscles coming back.  That wonderful feeling was soon cut short when I was diagnosed with arm and truncal LE.  Unfortunately many many surgeons are under the impression that LE is rare to non-existant, or at least have the opinion that "None of my patients ever develop LE."

I see you had 8 nodes removed.  That means you are at increased risk of developing LE.  Please work with your LE therapist to develop a program to work up slowly and stay away from high risk exercises like push ups, at least until the LE therapist gives you the all clear. I know you want to "go full force" but the limited gratification you get from getting back to intense lifting workouts now may soon become life long regrets if you develop LE.  

Like you, my surgeons at Hopkins told me what I wanted to hear, so I went along with that.  It seems you have some concerns about LE or you wouldn't be on this thread.  Please go with that little warning voice that's telling you that like it or not, your life has changed and there are certain precautions you need to take now when working out.  I wish I'd listened to my warning voice, but the surgeon's words were so welcome I chose to ignore the warning voice.  

Outfield, I'm not an athlete like you, but I do always notice that I swell at the end of the day. When I'm better about regular exercising, my LE is better--all that deep breathing.

I helped Binney and Jane and others with the stepupspeakout site, and I'm glad it's helped you. Binney just put a section in about bike riding.

I don't know if you saw that Nordy just completed a 100 mile bike ride--and MOTC is always running marathons, and Bomber/Deb hasn't posted for a while but she's always out there doing something--you will not be a couch potato. You'll just figure out what you have to do to manage the LE.

I gave up tennis: I'm left handed and it's in my left hand, and as I'm not a natural athlete, I always had tennis elbow. As I gain more confidence about managing my LE, and notice how much better I feel after exercise, I'm figuring out more of what I can do.

As you noticed, the medical literature on cording is brief series: and the dogma was that cording is not linked to LE. The first time I saw that it was considered a risk factor was in the International Best Practices Guideline, and then the BMJ study on early PT was fairly compelling:

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

---Axillary Web Syndrome is a risk factor for lymphedema: In a study of early PT to minimize lymphedema, a subset of patients who developed axillary web syndrome at 3-4 weeks post-op had an almost universal development of lymphedema, despite intervention http://www.ncbi.nlm.nih.gov/pubmed/20068255

BMJ. 2010; 340: b5396. Published online 2010 January 12. "We also found that 12 of the 18 women who developed secondary lymphoedema had axillary web syndrome during the second and third week after surgery. The axillary web syndrome is a known but poorly studied complication of surgery. No study has shown any link between the axillary web syndrome and the onset of secondary lymphoedema. We and others suggest that the axillary web syndrome may be a sign of injury to the lymphatic system and it could produce a lymphatic overload as a result of failure of the lymphatic system. This overload, together with other factors, could be responsible for the onset of secondary lymphoedema"

It's funny that you mention border collies: I have a half aussie (my avatar: mom was a shepherd) and she has border collie mentality about the ball and chasing, and I always said I loved tennis because it brought out the border collie in me: chase the ball.

Do what you love, and the LE makes it more complicated, but shouldn't keep you from being the outfielder.

Kira

Coming in late.  I like the "MOTC is always running marathons," when I've only run one, but I am training for my second, so maybe one day I'll earn that description.  I have mild LE and wear a compression sleeve and glove when I run or work out with weights or ski, but I still do all these activities.  My LE therapist's theory was to understand what patients want to do and get them there safely.  Deb, you should find that with the sleeve you can build back up to your previous level of activity.  The fact that your arm chronically hurts sounds to me like sub-clinical lymphedema.  I get the achy arm, though my arm has never swelled.  This means you really do have to be careful about always wearing the sleeve at those times you were advised to, and watch your hand because it sounds like that isn't being compressed and you can get LE there as well (thats where I have it).  Hopefully, with the garments the pain will decrease.  I think its important to return to the activities you love.