Kicking LEs butt!! Exercise & Self Care Log
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Went for a walk this morning during the (cold) snowfall. It was uphill (well, a grade) and I had three layers of clothes so it was a workout for me. It was enjoyable. Doing some MLD and calling it a night.
Diane
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Hello ladies,
I am 5 month PFC and will have to fly in January. Its a short flight, about 3 hours and I need to understand about the compression sleeve for my right hand, I have 15 nodes removed.
Can you please help me to figure out what I need and where to go to get it, or even if I need it.
Many thanks!
~Ella
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Ella - PFC...I'm not sure what that means.
A couple of places to start: talk to whatever doctor will listen, BS, PS, Onc, GP and have them refer you to a certified Lymphedema PT or OT.
Check out the step up speak out site to find one in your area and find helpful information.
Some of your doctors may think you're crazy and it is not an issue but keep pressing and asking. It was finally my GP that referred me. All my other doctors blew me off. Don't let them do that to you. Keep asking until you get a referral. Some ladies with tht many nodes removed have no trouble. Some that have no nodes removed develop LE. So, it is better to take the precautions. Good for you for being proactive!
Here is the website: http://www.stepup-speakout.org/0 -
PFC. Private first class or post final chemo, take your pick.
Yes Ella, get a referral so at least they will have base line measurements for you. If you're having no symptoms or problems with LE, there are two schools of thought, one isto wear a sleeve as a preventive measure which the LE T would figure out which one and get it for you or tell you where to get it. I believe the majority feel that the sleeve is good as a preventative. There is another school of thought, the minority I think, that feel it could be harmful and even bring on LE if you wear a compression sleeve with no current symptoms. I personally would get and wear a sleeve even though my LE T (who I really think knows his stuff) thinks it has the potential to be harmful.0 -
I'm 100% with Dawne and Kay. If you wear the sleeve be sure to leave it on for a couple of hours after you arrive for your body to adjust. My LE-T thinks you should wear one when flying. Have you been assessed at all for LE-T? My truncal LE showed up about 3 months PFC and 1 month post rads. Be sure to have them assess you for truncal LE also, I wear a compression bra when I fly so that it doesn't flair, as well as the sleeve.
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. >>>"So I'm not sure it is a Farrow problem."
Not sure, Dawne - hence the idea to email them and ask ... In any case, for anyone who is interested, there was a very helpful post put on the 'ALL things gloves and sleeves' thread today (not from me ) so pls. check there for the follow up info.
In the meantime, I am doing a lot of research work on the exercise DVD and have even gotten a videographer from NYC!
I am personally thinking of trying a rebounder <though I am not in the "best" position to take a fall> because of all the good reports I have come across from it. I know there is some debate , but for me personally, I would hope that it just might improve my leg circulation as well , so I would like to ask -
Does anyone here personally use a rebounder OR have any add'l info on the use of a rebounder as part of an exercise program for LE?
Also- please PM me over the next few days and let me know if you would like to be a part of this exercise DVD ( filming in Massachusetts) either in person OR virtually. I need to compile a list of names - even your virtual names for now.
You can always PM me your best exercise ideas , and I will do the research to (also) see what the ' experts' say. I would also like to know if there are any exercises that you find FLARE your LE. Even though we are all different, I think it would be of benefit to know and look into this area as well.Finally, does anybody know of a DR or highly respected medical professional who I might contact for input into this project ?
Please feel free to PM me any and all ideas as they pop into your heads!
*EDITED TO ADD: I know some of you (Carol? ) do not recommend the use of 'stretchy bands' and I believe I understand how it would be difficult to measure the force of resistance being applied. However, I was surprised to find them included in the exercise section in the book: " Lymphedma "(Burt & White) which is recommended by NLN. Comments ?
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Purple, if you do a "search" of the LE forum for the word "rebounder" you'll find a wealth of information here. Look particularly for posts by LindaLou, who has repeatedly explained the best brands, routines, and safety precautions over the last couple of years.
Be well!
Binney0 -
Thanks a lot, Binney - will do !
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Purple, I have not read the Burt and White book and wonder if their discussion of exercise was developed prior to the PAL trial, which did a great job of establishing sound reasons for using measurable resistance for strength training, i.e. dumbbells or other weights instead of stretchy resistance bands or bodyweight exercises. Or maybe they're basing it on the NLN position paper on exercise, which says that bodyweight exercise is OK. I questioned that, and they refused to budge on the issue. So I contacted a very well known LE/exercise researcher to ask about it, and her private response to me was to agree that non-measurable resistance is not a good idea when beginning to incorporate resistance training in an exercise program...it's something to be worked up to, using known weights and the slowly progressive method espoused in the PAL protocol. This researcher was not willing to raise a fuss with the NLN, so the poor advice (IMHO) about non-measurable resistance training remains in the NLN exercise position paper.
Carol
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"wonder if their discussion of exercise was developed prior to the PAL trial, which did a great job ..."
Sounds like that may well be it, Carol. This is the 2nd ed. and copyrighted in 2005.I certainly will never use resistance bands- it was just a curiousity to me in all the research I've been doing.
Thank you.
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We have a ton of snow and it's been really cold today so I put off going for a walk. (Even though the dog was more than willing.) I told DH if I saw my neighbour go by with her dog then I'd go too. Well, she went by. So I made good on my promise. It was tough walking even on a snowmobile trail that had been groomed some time in the night but still, it felt good and it was invigorating. I also did MLD this morning before putting my sleeve on. Actually, it would be lovely to go again now as the wind has died down. BUT, a cuppa sounds more inviting.
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Ummmm, where's Becky?
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Question for all the Ladies....Since I started doing the beginning part of Sansone and Lebed, Per LE T's orders only 5 minutes of each, I am having right hip issues... Is this normal? Always afraid of another SE from radiation... I have been mobile through all my treatments and surgeries, this has just arrived on my doorstep in the past 4 days... Anyone else have this happen in the beginning of doing these exercises? I see my pain management doc on thursday this next week... is this a question for him or should I just see what happens as I move?
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I see my pain management doc on thursday this next week... is this a question for him or should I just see what happens as I move?
Sure it's a Q for him, GMA!
I have had all kinds of issues with exercise over the yrs., incl but not limited to hip bursitis ...that is a possibility.None of them had a thing to do with cancer, and I didnt have radiation.
Listen to your body, and talk to your DR!
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Dang Gma! Always ask the doc, and I seem to get new pains everytime I start any new exercise. See if not doing it a couple of days helps, or do the lebed's sitting down? Just a thought.
Gma - did you have chemo? Recently (the last 6 months) some of my old aches and pains came back - they had stopped during chemo, from the steroids, and just recently started up again, so if you had chemo (and steroids), it could be something like that?
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hmm, there is a lovely yoga exercise that works great on hip pain so try this gently.....
sit in a chair, with right leg crossed over left knee. sort of push down very gently on the top of the right knee
depending on how limber you are will depend on how far down you can push your knee
I used to have major issues with my right hip, it stopped when I learned to do some stretches like this and also....well mine was really caused by my bad walking caused by a dumb toe....but the stretch works wonders
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Linda no chemo, just radiation.
Proud topspin, thanks for reminding me of that stretch.0 -
Thanks Dawne-Hope and Kay_G!
I will definitely follow up and have a lot of reading to do.
Happy New Year everybody!!
~E
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proudtospin, that stretch is one I do every day (and I had no clue it has yoga roots!). It stretches the pierformis muscle, which is the root of many a backache. A PT showed me that stretch when I was in great pain from lower back issues, and it does indeed work wonders. In my experience, the more you can sit on the edge of the chair, the more you can stretch the muscle.
Today, I walked. And walked. And walked. DH and I did an 8-mile walk starting late morning (he's telling his friends I made him walk 8 miles for a beer!). After lunch, we kept at it, with a few rest periods and time out for a cuppa joe. And more after dinner. Total for the day: 30,478 steps, which my fitbit tells me equals 13.5 miles, and I also climbed 33 flights of stairs during the day. Except the first 8 miles, no speed records, but simply delightful outdoor walking in a beautiful place. I have done all the stretches in my playbook three times today, including a round of Lebeds, and now: bedtime!
Carol
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gmafoley, I think the suggestion to try the Lebeds from a chair is a marvelous idea!!! You will move your lymph without taxing your hip and lower body. Worth a try!
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OMG Carol. I think I need to go lay down. I'm tired just reading about your day.
I did some housework, washed a bunch of dishes, carried garbage, did a little cooking for next week... don't have a ton of steps, but ...
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That piriformis stretch has given me sanity back. With my back injury I get pain (sciatica) down into the piriformis area and hip. It truly is a pain in the butt. I do the cited stretch and a bunch of similar variations.
Going to do Lebeds now and tai chi breather
The key is keeping this muscle loose, yet exercising tightens your muscles. You must stretch it out and cannot skimp out on this. Because of the tightening my chiro has banned me from hills and stair climbing for now. As much as I love Leslie Sansone, it truly irritates my piriformis and it is because you are marching in one spot, almost like stair climbing. I only do Leslie infrequently but as soon as I get my periformis\back and hip in order I will be right back Into her.
GMA, this is probably what you are experiencing. For short 10 min walks, I chose to walk indoors around my house and then I don't get as much of the piriformis tightening as I do with Leslie.
Nordy if you are reading. You have some great advice for the piriformis and hip area. Are you there to give us a few more stretches? Nordy helped me quite a bit.
Try laying on your back, put left heel on your right knee, then grasp right knee with both hands and pull that knee towards you, breathe out as you pull. Stretches piriformis.
Also if your lower back is tight it can pull on your butt and hamstring muscles causing pain In the hip.
Did lebeds today, strange but my truncal has been bothering me directly under the armpit today, Put in swell spot and underamour.0 -
Good idea proudtospin!
And pls correct me if I am wrong, but if memory serves me, I THINK that is called " pigeon pose' if GMA could possibly google a youtube or picture. I did use yoga when I had my bursitis as well as when I tore my rotator cuff. It is so helpful.
And now another question for you exercise ladies- ESP those who lift weights:
I was thinking of when I broke my shoulder ( left of course ) and how I exercised 7 days a week . Everything I did was on the right. I lifted 10 lb weights for tricep extensions and bicep curls etc ... I did aerobics , yadyadyadyda and never missed a beat. Pilates and yoga was what I finally used to avoid surgery and get the shoulder ROM back - almost completely btw.But I digress...What about with LE ( ESP with wts ) - Do you feel comfortable doing anything and everything with the OPPOSITE body part ?
In other words, would you say it is fine for someone to just pick up a hand wt. and start lifting with their "good side" or do aerobics with lots of repetetive arm movements on the 'good side ". My brother ( a national bodybuilder) says it is fine to begin weightlifting on my right, but I am skeptical. ( Obviously I woud not begin with my ole 10 pound- I have all increments from when I broke the ' bad arm')Whaddaya' think ?
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Thanks ladies I will try the sitting with Lebed and the stretches - I was so hoping I could do sansone because our house doesn't have a walk pattern at all we are on a quad-level home - stairs everywhere and not much walking space on each floor..
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That hip stretch is one of my favorites as well - really helps with hip and back stiffness.
MLD, 4 mile run and Lebeds yesterday. I used the Flexitouch yesterday afternoon and wore my Tribute vest last night (too many salty treats lately!). This morning was 45 minutes of stretching/yoga/Lebeds.
Purple - the LET who helped me develop my weight lifting program said to stay balanced - that is, use the same weights and reps on the good side as on the affected side, even if the good side was capable of doing more, and gradually build them up evenly. I've taken that advice for all my exercise - yoga stretches, etc. If I do one side, I do the other. The Lebeds also do exercises on both sides evenly, even when one side is not affected. Obviously in every day life my good side gets more work as I try to have it do more, like carrying the heavier grocery bags, etc. But when exercising, I try to do the same on both sides.
Today is a special day for me - five years ago today I was told I had breast cancer. It's been quite a roller coaster, but at this point I am very lucky and show no evidence of disease. For all the problems and issues I have with LE, I realize that I am very grateful to be here to b*tch about it. I know that there are no guarantees in life, but something about making it 5 years feels significant to me. So, Happy New Year's to me and to all of us who are still here and fighting!
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Hi,
Piriformis muscle syndrome has also caused me a lot of pain. I have done the hip stretch regularly, but sometimes I got more pain in my hip after doing it. I think I overdid it. i.e. I stretched too much, pushed down too much on my knee and I kept the stretch too long. I recently found a very good fysio-therapist who showed me one exercise which has helped a lot. It is the first exercise shown on the following video. I do the whole sequence, including the hip stretch but much "lighter".
http://www.youtube.com/watch?v=r7U1nRpxZuM&feature=endscreen
To NatsFan and all "Lymfa Lafies" still here and fighting. A VERY HAPPY AND HEALTHY YEAR! 2013 will be the year of all possibilities.
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NatsFan: HOOOOORAAAAY! Five years--that's huge! What a great cause for celebration!
Purple, my trainer is very strict on balance--no working my 'good' side with heavier weights than what my naughty side can handle.
Cindy, keep in mind that I'm on vacation and in a beautiful place tailor made for walking. And DH is ummm...competitive, so we egg each other on. At home I would never take the time for all this walking, and after cooking, laundry, etc., energy is depleted and time is gone. We all do what we can, when we can, and every step strikes a blow against inactivity and helps us manage our LE. Whether 2,000 steps or 20,000!
Carol
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Carol - I was up to 15,000 daily steps before I went to Billings. After spending 10 days sitting on my a** and managing 2000 steps or so. I haven't been able to motivate myself to do a darn thing (Picture my poor dog standing by the door with his legs crossed) 3000 steps on Saturday (grocery shopping) wore me out. Hell. I can't believe what a pansy this has turned me into. So instead of trying to jump right back in at 15,000, I'm shooting for 3000 today, 4000 tomorrow, and working back up. Grrr, my brother's family gave me some cash for Christmas, so I ordered the rebounder I was looking at. Maybe bouncing will be motivating.
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Nitocris, I just watched that video, and thank you! I had not seen the legs-outstretched-rotator stretch before, but it makes perfect sense and I'm going to include that one in my stretching routine now. Happy New Year over there in Finland, and thank you for all the great resources you have posted for us this year!
Carol
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Mary, hooray!! I'll be thinking of you especially when the fireworks go off tonight--the whole world is celebrating with you. Onward!
Nitocris, that's a great video--feels wonderful, simple, easy to remember. Thanks!
Binney0
