Guidelines on Exercise For Those With/At Risk for Lymphedema
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I've been training for a half marathon. started wearing my sleeves and gaunlet. the other day I was really pushing it or should I say my friend was pushing me- was moaning and complaining. my fingers started to swell. I did my fist pumping, lifting arms up etc. it did go away within few hours, but think I need glove for when exercizing like that. it was horribly muggy.
I am using lymphedivas sleeves, cause I like the patterns. these are good sleeves? right?
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When I trained for my HM in April, my truncal LE flared badly - I actually gained 5 pounds in the month before the HM at a point when my training was most intense, all in my trunk. I was miserable.
After several visits with the LE therapist, I'm still not quite back to where I was before, but it's gotten a lot better. I think for me the stress of training stressed my entire system - lymphatic, digestive, etc. I developed a lot of digestive upsets (feelings of fullness after just a few bites, heartburn, intolerance to certain foods, etc.) that I've never had before, and they all subsided once the race was done and I scaled back my training schedule. I would schedule a visit with your LE therapist to be re-measured to make sure your sleeves are fitted properly - as you may know, an improperly fitting sleeve and gauntlet can do more harm than good. I use Juzo and have never been fitted for a lymphediva sleeve so I don't know about their quality. Also, have you been taught to wrap? You may want to just wrap your hand and fingers in that white finger wrap bandage. Also, drink water, water, and more water to help keep the lymphatic fluid flowing more easily.
And this heat in DC has been brutal - I'm sure training in the heat is not helping things.
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Went to see the breast care nurse and she said my arm was an inch bigger then the Normal side. As I was having pain in arm and hand she will give me a sleeve and hand bandage. She then said if I didn't have the pain I wouldn't need to wear them. So she said wear it in the house when doing housework but take it off after. Didn't have much faith in her so now I don't know what to do.
My physio said I should see a specialist but the nurse won't let me.0 -
ali....sorry you are having pain but if your arm is that much bigger, it sure sounds like LE and well pain, that is part of it all.
Why not try the sleeve and hand bandage. Not sure I am understanding why the physio wound suggest a specialist (sounds good to me) but who is the nurse to say not? Can you call a LE therapist on your own?
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Ali - I had to fight for a LE therapist myself after a year of having breast swell and pain.. I went to the doc that I trust and said I need a referral for an Evaluation.. They can't deny you.. You just have to put your foot down and say, I want to "rule out" LE.. that usually will get them to do it.
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bump it up!
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bumping this important thread, we've had nearly 800 views so far!
Thanks to all who worked on this project. ♥
You are making a real difference in people's lives.
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Thank you all for this wonderful thread and I a printing out the Exercise brochures right now for me and my personal trainer. Had Mastectomy w/5 lymph nodes removed 9/23 and yesterday demanded the Dr. send me to Physical Therapy so I can get back to my weight training without injury. Hard to know/understand what is the proper amount of exercise. Calling PT today to schedule next week and once done with PT will give these brochures to my Personal Trainer. Thank you all for this information.
QUESTION: While in hospital for 4 days asked the nurses, BS, PS, about the exercises they show to do in the American Cancer Society booklets and none of the nurses/Dr's seemed to know about it?? They said just try to use your arm for everyday stuff...combing hair etc.....Is this how ignorant all BS and PS are about preventing Lymphedema?????
Yesterday when I initially asked PS to send me to physical therpay he said, "you seem to be doing ok". What??? I told him, "well yes, I can brush my teeth and feed myself but I want to get back to working out without hurting myself and there seems to be a grey area to me of what is too much....what is a good stretch feeling and what is a stretch feeling that you have done too much. He still didn't want to send me to PT then my husband spoke up and he said, "ok...I write the script for you to go to PT". Wow!!!! I can't believe the ignorance of Drs.....or is it just the Drs./nurses in my area?????
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Bella - sadly the ignorance in the medical community about lymphedema and LE risk reduction measures is all too common. There are many women (including me) who post on the LE threads who were given zero information about lymphedema or even told about it by our surgeons or the other medical professionals on our team. The first time I ever heard of lymphedema is when I googled my symptoms and found out what I had - my surgeons had blown off my concerns about cording and swelling and never mentioned LE. Other women are given incomplete or incorrect information about LE, such as being told that women who have "only" had an SNB can't get LE and therefore don't need to take any risk reduction measures. Some women are even given instructions to begin wall walking or other ROM exercises immediately after surgery, when studies show that doing those prior to two weeks after surgery may actually increase the incidence of LE. Stories like this are posted on the LE threads over and over again by women who have LE.
Do make sure your PT is familiar with LE - there are also women on the LE threads whose LE was triggered or worsened while under the care of a PT simply because the PT was unfamiliar with LE or at best had taken a "weekend wonder" course about LE. Not all PT are competent to evaluate and treat LE. The Step Up Speak Out LE website (written by expert women with LE who frequent the LE threads and is the website where the handouts are from) has information on finding a qualified lymphdema therapist (ideally a Certified Lymphedema Therapist - the therapist will have the initials CLT after their name). You may also want to check out the LE threads here on BCO - there's a lot of info about LE including what to expect at your first visit with the therapist so you can get an idea right away if your therapist knows about LE or not.
You are SO smart to be proactive and to not let your PS minimize your concerns. Good luck!0 -
I thought the stuff I did after treatment was good...for a time it seemed fine.
but when I tried to up the weights and such, I got in trouble with arm pain
I did get lucky when someone introduced me to my cute trainer..."Tim the cancer guy" who is a PT and also working on his PHD in physical therapy with a specialty in Cancer survivors! yah hoo if you can find someone like that so best to look into the nearby cancer centers
by the way, Tim boy has been watching me like a hawk and I am getting stronger and he points out things to me I would never have thought of0 -
Wow, I am out at the page now "Step Up Speak Out" and I cannot believe this, "Medicare does not currently cover their services" That is crazy! I am not on Medicare as I am only 44 yrs old but I always watch this stuff as a sign of what is to come for me and the $$$$ that I will have to have available to pay for my only medical when Medicare does not cover stuff! Crazy!!!!!!!!!!!!
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Bump!
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bump for mcgis
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bump in honor of 1,000 views!
Thanks to the people who worked so hard to put together this valuable info.
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bump for mnmbeck and Fallleaves, welcome to the Let's Post our Daily Exercise thread. ♥
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hi all, figured I would post my exercise...back from gym so mine included time on treadmill, bike and in the pool. Time in gym was about 90 min including the time I exercised my jaw .....hmmmm tired so time to relax
I am good when I go to the gym but never seem to so stuff on my own0 -
hi proudtospin, I sent you a PM.
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Got the message, thanks for the invite
I am a complete believer in the need to exercise while we have to deal with all this crud~~~
normal for me is about 4 visits a week to the gym (ok, so I just retired~!~) and truly believe it works to keep the mind off of bad stuff and better than an anti depressant or pain pills
understand many do need them but exercise sure does reduce the need in some of us0 -
Thanks, Badger. I've sent it to my husband's email for him to print out for me (printer here at home is temperamental).
Wanting to get back into exercising and am totally freaked about more swelling so I hope this helps me. My PT has told me that I should stay away from kickboxing for it has too many repetitive moves. I LOVE that class too
so bummed there. Perhaps Zumba? Spin class? And in the summer I'll do my water aerobics, and I'll keep up and try to increase my walking till the summer when it's too hot here.0 -
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I so wish I could do water aerobics.. Allergic to the chemicals they use in the pools.0 -
GMA, as someone with too many allergies myself, I do sympathise with you. Actually I as set to do complete allergy testing next Tues as doc is concerned about all the dang stuff that keeps popping up!
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hello gals. Glad to find this forum. I just started working with a personal trainer who is very interested in this subject and has been very open to learning about LE exercise. I gave her a copy of the handout from Step Up Speak Out last week. We met a few days ago just for a discussion time. Today, I meet with her again to start my program. She is also doing further research on her own. She also leads some aquatic exercise programs that she wants me to attend. I will let you know how it goes.0 -
Joan, having a trainer on board with the correct info is great! I have a guy who gets it and understands, he keeps me out of trouble! Best of luck and welcome!
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Thanks for this great information! Glad I didn't buy that hot yoga membership! Pray my insurance will approve more sessions with LE therapist who can help me with exercise.0 -
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