Lymphedema? anyone?

[Michele S]

Originally Posted by Jewels5

Do you mind if I ask, are you doing weights at all with your exercise? The most I have used on occasion is 5lb dumbbells, but I feel more comfortable sticking with 3's. In the last couple of months I have incorporated more stretching and it has helped tremendously with the tightness on that side.

Julie- I have tried using 1-2# dumbbells. I also occasionally will do PFH with the lightest resistance band. However, my upper arm swells if I do any sort of strength training with much weight. If I work to fatigue, I am puffy the next day (or that evening!). I *can* carry groceries (finally!) and 20# bags of pet food.

I need to stretch more. I just hate it. It is soooo uncomfortable.

[Michele S]

going to look into T-tapp, foam-rolling, rebounding! Thanks for the suggestions! Those are things I haven't tried yet. Ahhhh... where is my collage catalog?!

And, dry-brushing sounds interesting... going to look for that thread.

thanks everyone!! I appreciate the suggestions instead of just saying "well, then don't exercise." *Normal* people don't understand that exercise keeps me sane. Well,,, sort of!

[Clare*]

Hi Michelle!

I'm sorry to say that foam-rolling & rebounding have not worked too much for me. Also, the dry brushing didn't do much. These are good systems, I'm sure, but the thing to remember is that we are actually missing the lymph nodes that normally take away the lymph fluids. We need to make new longer pathways to other lymph node clusters to drain the lymph- and we deal with scar tissue, implants that block the area, etc. So I've had to go to a qualified lymphedema therapist to work on the areas- it's helped a lot, and I do a specialized form of lymph massage.

Because my swelling is in the chest and back, plus a lot in my arm pit and top shoulder, the regular sleeve doesn't work for me- the elastic on top hits me at the exact wrong spot. I've actually found that Spanx high-cut camisoles and their "On Top and In Control" body shapers work very well to give me compression where I need it. "On Top and In Control"
I wear my older ones for working out.

I have to prop my arm up when I'm sleeping, and I spend a lot of each day with my hand straight up over my head doing gentle lymph massage- I don't even realize I'm doing it anymore.

My cardio is usually treadmill & stationary biking with my neighbor, and we like to do the Just Dance WII workouts too. I think dancing with my hands over my head is good for me- for some reason it works better then rebounding. I do some weight work- kettlebell swings seem to be good for me. I don't go higher then a 20 lb kettlebell. I do a lot of RKS 1 & 2- I've done some of the other ones, but I gravitate to those two for some reason. I won't do push-ups, they have set off too much swelling, but the planks in RKS 2 are okay for me. I'm better with the two handed moves then the singles. I also like Firm type workouts, but I do have to be careful with the weight amounts. I can't go over 5 lbs with shoulder work, but I can do 15 lbs for lat pulls.

I just do a lot of modifying- I'll skip some arm exercises if I'm hurting and just sub in some squats instead.

The Spanx compression garments have really helped me- that's probably been my biggest discovery.

I hope this helps.

[Michele S]

Originally Posted by Clare*

Because my swelling is in the chest and back, plus a lot in my arm pit and top shoulder, the regular sleeve doesn't work for me- the elastic on top hits me at the exact wrong spot. I've actually found that Spanx high-cut camisoles and their "On Top and In Control" body shapers work very well to give me compression where I need it. "On Top and In Control"
I wear my older ones for working out.

<snip>

I hope this helps.

yes it does!! The sleeve just helps with the upper arm (bat wing) swelling. But I get pockets around my implant and my back (where my sports bra doesn't cover). I have a compression camisole but I just end up with the big "bra-overhang" pocket. I didn't realize that there were spanx garments that went higher!!!!!! YAY!!!!!! I have tried UA but it isn't enough compression. I am going to order one of the spanx... either the high-cut cami (which I'd rather) or the t-shirt style. I need to figure out how *high* the high-cut cami is.

My other question is, can you tell *during* a workout that you are aggrevating (sp?) your LE? Obvious things (down dog, heavier weights, too many reps, push-ups, planks) are out for me but sometimes I will be doing something I *think* is OK and then 3 hrs later, I ache along my torso and my arm is puffy and heavy. So... how do you know *when* to modify?

thanks! xxoo

[Jewels5]

Originally Posted by Michele S

Julie- I have tried using 1-2# dumbbells. I also occasionally will do PFH with the lightest resistance band. However, my upper arm swells if I do any sort of strength training with much weight. If I work to fatigue, I am puffy the next day (or that evening!). I *can* carry groceries (finally!) and 20# bags of pet food.

I need to stretch more. I just hate it. It is soooo uncomfortable.

I am not familiar with PFH.. I'm sorry I'm of no help. That's interesting that you can carry a 20# bag though, so hopefully this will improve for you.

Regarding the stretching, I know how you feel (sort of anyway). But the more I did it it really helped. Maybe just focus on one exercise at first and take baby steps? Best wishes for you!

[Clare*]

Originally Posted by Michele S

yes it does!! The sleeve just helps with the upper arm (bat wing) swelling. But I get pockets around my implant and my back (where my sports bra doesn't cover). I have a compression camisole but I just end up with the big "bra-overhang" pocket. I didn't realize that there were spanx garments that went higher!!!!!! YAY!!!!!! I have tried UA but it isn't enough compression. I am going to order one of the spanx... either the high-cut cami (which I'd rather) or the t-shirt style. I need to figure out how *high* the high-cut cami is.

I forgot to tell you about Assets by Spanx at Target! They are actually what I wear a lot because they are much cheaper! If you have a Target near you, you can go try them on. Here are two of my favorite styles:

Standout Slimmers Tank

Fantastic Firmers Tank

My other question is, can you tell *during* a workout that you are aggrevating (sp?) your LE? Obvious things (down dog, heavier weights, too many reps, push-ups, planks) are out for me but sometimes I will be doing something I *think* is OK and then 3 hrs later, I ache along my torso and my arm is puffy and heavy. So... how do you know *when* to modify?

thanks! xxoo

I guess I really find it hard to say- it seems I feel tight in my armpit and my arm and hand seem to tire out. But that does mean I've gone too far. So I may be unconsciously just aware of how long/hard I've been working that side, and it starts tiring.. so it's time to stop!

[Daphne M]

Hi Michele - Clare's got great advice and practical experience. I can't add a lot, but I will share my own experience with exercise limitations since surgery.

In 2008, I had a single mastectomy with minimal (two or three) lymph nodes removed and I've been really fortunate to be lymphedema-free. I do have a lot of issues with neck and upper back pain due to extremely tight chest/back/neck muscles since the mastectomy and reconstruction. I've had to give up swimming, avoid some upper body exercises, can no longer do military push-ups (not that I could ever do a lot of them, LOL) and have to limit the amount of cycling I do as a result. One thing that helps to keep my back/neck pain from flaring up badly is if I get a massage every 3 to 6 weeks and if I lie on my back for a while every evening with my arms in goalpost position. I know our issues are not the same, but I wonder if regular massage would help the LE? If compression helps, it seems as if massage should help a lot too.

Hi Clare!!!!

[Clare*]

Hi Sweetie!

[Michele S]

Originally Posted by Clare*

Hi Sweetie!

Hi Daphne!!

I remember you from way back when... and Clare too!!!! So happy to *see* both of you!!!!

[Daphne M]

Hi Clare and Michele! Hugs, hugs, hugs!

I like that we're all still knocking around. We are a tough bunch. I just wish I had better advice on the lymphedema. It seems like a Catch-22, because the only way I know to build a better lymph drainage system is to exercise. I'm always shocked that they don't know more about exercise post-mastectomy/reconstruction. We mostly learn from one another's experience.