Kicking LEs butt!! Exercise & Self Care Log
Comments
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Purple, my LE therapist tells me to go until I start to swell then stop of course when you are walking in the park, it is hard if you are half way around when you swell ... He told me to start watching the Lebed dvd but not to start until I'm back to normal (swell and surgery wise). I so psycologically, need to exercise but I know it would only cause problems if I start too early... someone once said "patience is a virtue and NEVER pray for it.."
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This sentence "The important thing to consider is whether you feel good after the exercise and how your affected limb reacts after you exercise." is the most important sentence in the article IMHO, and is really my guiding principle. I started very slowly. I did basically no exercise after surgery and during rads. As soon as I could get a bra on after rads were done (a week or so) I started walking, not even a hundred feet the first walk. I'm coming up on 6 months out of rads and I walk 5-7 miles most days (only made 3 yesterday) but it's still in little pieces, 1/2 mile or so at most... I don't notice any increased swelling that I can attribute to exercise. I swell after I eat something with too much sodium, or like today, when I didn't exercise enough...
Your mileage WILL vary.
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I called my fitter . She said she is going to have to get me a custom made glove and sleeve ( Goodbye lymphediva :>(
because the sleeve was tight in the wrist before exercise ... etc etc ... glove cut off circ AND MADE THUMB numb. sorry caps.I told her i was seeing the LE therapist the day after TGiving baciuse I have that day off work. She said she took it off too but she will meet me at my appt. Who is this woman ???! (What an angel!)
So, in the meantime- no tx . Pretty concerned about pricing of custom made as well as what INS will cover. ( Custom measured was bad enough - that glove was $380!Back to square one. Any tips on custom fit / think it is absolutely necessary ???
In the meantime, I am guessing I should not do any exercise at all.I just ordered the Lebed dvd.
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Becky - Poolesville! How fun. Please thank your sister and hubby for their part in maintaining the AT - what part do they work on? We'll be up at our cabin all Tkg week hiking on the AT, so we'll think of you as we're on the trail. Your family "turkey walk" sounds like fun.
Cindy - I think you hit the nail on the head with "your mileage will vary" statement.
So much of LE is trial and error - LE is so variable with each of us that we all have to figure out our own individual plans, and what we can do and not do. Talk about personalized medicine! And the sad thing is that too many of us get no advice or incorrect advice about LE from our medical caregivers. 0 -
Hugz4---- I am here! I have been busy playing cab driver to my two kids AND I just returned from a most fabulous trip to beautiful Kauai!!!! I must mention that I have found the perfect combo of sleeves (for me anyway) for flying. I take the silver wave bilateral sleeve (http://www.store.lymphedemasleeveco.com/en/silver-wave-sleeve.html) and cut the shoulder part off, then use that as my "base" layer. I then follow that with the cheapest sleeve you can ever find as my top layer (unfortunately, now I cannot find them! Maybe they were discontinued???!!! - I have had mine forever!). This combination supplies me with just the kind of support I need without being constricting - which is one of the problems I usually have on a long flight. Shoot... I am gong to keep looking and see if I can find it. I hope you are all doing well! I feel like I do not have time in the day to get everything done that I want to do, and that includes catching up on here! I am glad to see that everyone continues to MOVE! It is so important and definitely requires some commitment to do!! You ladies rock!
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NORDY
Do you have stage 1 bi-lateral, may I ask?
I have never seen such a sleeve.What kind of a bra do you wear it with ?
How is it you are able to just mix/ match , order your own etc etc ... did a fitter help or >?
Please explain - by PM if you prefer.Many thnaks for add'l details.
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Ha! I found them! Okay, here is what I have to say about this glove/sleeve combo - first of all, it is not your normal compression sleeve - it WILL roll down, is not very form fitting at the wrist (or likely just at my wrist which is pretty small), and overall would never provide enough compression to most people on a normal basis. So why use it? Well, for me, it works the best when I am going to be fairly sedentary and not moving my arms around -- such as on a long flight or during surgery! The gloves are built into the sleeve, there is absolutely zero constriction at the wrist and none at the top of the arm, because there is NO top band. I use in conjunction with the silver wave for a couple reasons, one being that the silver wave does give me compression at my wrist, so that takes care of that issue, and second that it provides overall more compression while helping prevent fibrosis. I love the combination of the two together. This way, it is also easy to pull the top sleeve off when I have to use the restroom or wash my hands, while still maintaining some compression. Anyway, this combo may not work for many people. My arm does better with a lighter compression than a heavy one (although at night it does best when I wrap it) - so I am in no way encouraging people to scrap a method for flying that works for them. This is just where I have had success and I have tried many different sleeve/glove combinations. I generally will not wrap for flying, but that is mainly an issue that has always been because I am usually flying with my kids and when they were in diapers and even now, wiping a dirty hiney, is not really conducive to clean finger wraps - even when using the other hand! Then it is hard to get a decent hand washing done! Anyway, the website for the oversleeve is: http://www.pattersonmedical.com/app.aspx?cmd=getProduct&key=IF_45668. Remember if you do decide to try it, to buy the opposite arm so that you can wear the seams out instead of on the inside.
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Ahhhh, Purple, my background and degree is in PT. I have ordered many a sleeve for myself, although I go to my PT for custom fit ones. Any OTC sleeves, anyone can buy and I self measure. My LE is stage 1-2 and is unilateral. You can wear any kind of bra with the silverwave sleeve, if you are talking about wearing it as shown - it simply crosses the upper back, much like a bolero jacket. It does Not provide much compression on its own, but like I said, I cut it then use it in conjunction with the other sleeve for air travel. As for buying all these different sleeves... I have probabably spent way too much money trying different things. My favorite gloves are OTC, also purchased on the Patterson medical website. I have both an Elvarex OTC and a custom fit as well as a Juzo OTC, and I can tell you that all three of those turn my finger tips purple and make them turn into bulbous tips. The one from Patterson is comfy and does the job as needed, when needed. I am lucky that most of my LE has stayed out of my hand... But that is because I am always on top of my arm. I recently had a test that showed almost zero fluid drainage on my arm, so if I did not stay on top of things, it is safe to say that my arm would be humungous! I cannot go more than an hour without compression as it starts to ache with fluid back up. Every arm is different though. What works for me, may not work for someone else. I am happy to try to help however I can! You can always post questions to me -- I am pretty much an open book -- and I will try to check back more often. Otherwise, Binney and Kira are fabulous resources here!
I think this is the glove I have. I don't wear it much, thus have not had to order for a while, so not 100% sure: http://www.pattersonmedical.com/app.aspx?cmd=getProduct&key=IF_456720 -
Nordy
Thank you so much for the detailed info- I appreciate it !
The link you provided shows a glove for under $10. Is that right /! Can such a glove provide compression for stage 1 .?
The glove I got last week cost $380 ....REALLY brought the fingers down, but then as soon as I exercised the CIRC in my thumb was cut off and my wrist was tight.The sleeve may well have been a little snug in the wrist, but I am thinking the glove was more to blame and may have resulted in double compression.(WTH knows ?!!!_)
I am new to all this, and so afraid of screwing things up more as my hand does well.
Luckily, I had size 4 1/4 ring finger so you really cant tell (yet) but my ring no longer fits .
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Yes! Finished my second visit with the trainer. Already she is adding on the exercises while being kind to my LE arm. I feel accomplished when I leave and that is a good feeling. Now if I can just get in some cardio in between trainer days I would be heading in a good direction.
I'm not sure but I almost think I can feel a difference in my knees but then I don't think that is possible after two visits. Better enjoy my days - she promised to up the exercise for legs and core next week. Hmm.....
Baby steps - the knee pain, the lack of strength and endurance didn't happen overnight. It's one day at a time and today is good!
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ohio - That is awesome! I've found that when I strengthen the leg muscles around the knees...my knees feel better. Happy for you!!
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Hey, Ohio that is so good!
You have me thinking I should go back to working with a trainer. I have been having pain in my arm and currently blaming it on doing too much with weights. Hurts in the morning but after being up and moving around the pain goes away. Need to check the trainers at my gym but do not think any of them knows anything about LE
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Well, I did stretch my lymphediva just a tad as I supsected the glove was the real culprit.
I have been wearing it for 4 1/2 hrs with a simple IMAK glove which provides very little compression, but I really didnt dare put that other ' vice glove ' on!
Was able to do 40 mins of video-walk without repurcussion ( knock on wood !) I keep checking the fingers with a certain ring to see if they have swelled. Not yet!
The wrist has a slight line there, but I imagine it might anywhow- just like a tight sleeve of a cotton shirt( ?) Also, the elbow crease has a few light marks , but again, I would think this is normal (?)
I know when I used to wear compression stockings there would be a slight line behind the knee and at the waistband.Pls let me know if this does not seem right.
No MLD because I am still pretty much clueless !
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Yes Purple, those slight marks would be normal. Be sure your sleeve isn't bunching up at the elbow.
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Thank you, Marple !
It may be bunching just a tad now and then after enough movement if my elbows have been in in the bent position for a long time, but nothing I cant smooth right out.I am now hopeful this sleeve may actually work out.
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I developed lymphidema 9 months after surgery. My Pt therpist suggested the signs were there that I have always had a low problem with it. I despise stocking and all the do dads they use to control it. I went an alternate route that seems to have helped. I have a wedge at home that I use to get my feet up when ever I see the least bit of swelling, I do the massage, and exerises at home. But I also use the pool. I get in hour everyday, do excerises that are arobic and work core muscle group. The water from the pool works like a full body stocking and working the heart moves the fluid through faster. It is also great if you suffer any sort of chronic pain. To really make it fun, I usually meet with a group of ladies in the pool for a hen session while we work out, which has the added benifits of taking care of metal health. Overall. My lymphidema is under control, my ankles and calves are smaller than they have been in years. I feel better and I have way more energy. So make a Splash ladies, it is worth the pool or gym membership to feel better and look great.
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I agree on the benefits of a pool! I have a lo lever lymphedema but swim every week at my gym. I do believe it is part of the reason my lymphedema is steady and not progressed.
I do lovely laps, not a lot and not fast but they are lovely!
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Checking in to say hello. I have been limiting computer time but staying the course with LE exercise and self care. Currently traveling to FL by car. Yesterday was day 1, and my husband and I stopped every hour for a 5-10 min walk. At hotel I walked on treadmill and ended the day with over 12,000 steps on pedometer. Wanted to use the pool but not enough time. On the road again today, arriving in FL tonight. Brief MLD, lots of deep breathing, drinking plenty of water. We brought our own food and snacks and I have a handle on the sodium. Although I did have an omelet at the hotel for breakfast which had some kind of cheese whiz. Yuck! Hope the outdoor pool at condo is open and water warm enough to use. Have my hand weights in trunk of car and ready for PAL routine. Happy exercising and self care, ladies!
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Tina, you are putting me to shame! The past few days I have been in work overdrive, dealing with deadlines on projects before heading out for holiday travel to be followed immediately by work travel. I also took time out to do my part for the big Thursday meal, baking tons of bread to freeze and take with me to the big family T-day. I lost a few days of exercise, and I do mean lost...moved very little. Today I also needed to be with DH as he had some minor surgery (and it felt so good to return the favor of being his navigator and loving support, after all he has done for me in the past 18 months!). Tomorrow, lots of driving and I just have to commit in advance to do the stopping and walking. This is hard because I have two grandbabies at the other end of the drive, and I just want to get there! Wow, does life ever get in the way of exercise sometimes. We've all been there.
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Carol, I bet that bread is delicious! Your family will enjoy and appreciate your effort and skill. Sounds like work is super busy, but busy is good! Once things are under control, you will be pacing the airports and getting plenty of cardio. I think you mentioned a page or so back about modifying your routine for travel. Will be curious to hear how that works for you. I forget, but did I send you the "friendly" home routine I use? That works well for travel. The trainer I had to the house before my surgery set me up with that, and the exercises are slight variations to what I currently do. Let me know if you need/want it. Hope you husband is recovering from surgery and feeling well. It really does feel good to be on the giving end for a change. Our partners have been so kind! As for traveling solo, I am a little more tentative about where I get out to walk. When my husband is with me, we circle around a gas station or fast food joint multiple times if there are no sidewalks. That's fine, and I probably would do by myself, but at night or when I am in a busy area I feel the need to play it safe at times and don't get quite as much walking in. On the other hand, if I had grandbabies waiting to see me I would be inclined to press the pedal to the metal. If we don't cross paths before, I hope you and your family have a wonderful Thanksgiving!
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Hi All, My 90 yr old mother had severe chest pains last Friday night (of course at midnight). Called EMS. Just got released yesterday. Upshot is that she has angina pains. We were to go to MD tomorrow and she insists we still go. She really wants to see her new great grandson. Her PCP reluctantly agreed she can go. They will do a stress test next Monday to determine if it is stable angina or unstable angina. So I just got a lot of exercise running back and forth to hospital. At least in MD I will be with six siblings who can help me make decisions. She is so stubborn.
Anyway, today is for packing, car oil change, etc. Then out to dam for nice long walk. I was able to keep up with all of my MLD stuff.
Carol--Wish you could send some of that bread to MD! Have a safe trip.
Tina--Still coming to Knoxville after FL? I really look forward to seeing you again. No wrapping this time, I promise!
Happy Thanksgiving to all of my US friends. I am thankful for all of my oversea friends too!
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You guys are amazing - just reading your posts challenges me daily to get up and move. Wishing you all a blessed Thanksgiving. I'm thankful for not having to travel this week! A nice quiet Thanksgiving with our DD, DSIL & their 5 wonderful children!
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Been wearing my sleeve and OTC glove for app 6 hrs a day. So far, so good.
Did 30 mins of exer-walk today.
Looking forward to FRI appt where I hope to clarify MLD. I am just not good at it ..esp since I also have breast/truncal and think I may well be bi-lateral.We'll see !
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You girls are so AWESOME, Working full time, Caring for MS parents. Elderly 90 year parents, Kids, dogs, and the whole shambang. All while squezzing in the movement. UNBELIEVABLE! You all get a free passes to my gym if I ever have one!
Had many appointments and managed to walk 50 min. between appointments. Going to do Lebed opening right now before I head out the door again.
My Kinesio tape wounds are looking better but still reddish and swelled a bit! It's improving. Still watching it like a hawk between all this running about today.
Purple, Glad you are on the upswing of garments.
Watch the salt girls. All those yummy meals are loaded with it so don't add anymore. Drink water..... Make Love! ..There's a recipe for a good holiday.
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Thx hugz!
we shall see- my fitter wants me in custom. ( I dont think so)
As for the glove, I am in OTC- that cannot last.Still waiting on my Lebed video.
Happy Holidays to all---do not work too hard !
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Becky, I hope your mom is feeling well enough to thoroughly enjoy Thanksgiving, and that you can catch your breath from all the stress of her care and enjoy the holiday with your family, too.
Tina, I would love to see that workout, because I can compare it to the one my trainer devised for me. So far, I've not strayed from dumbbells when working out away from the gym, because I've been traveling by car most recently, so weights can go with me. Next week I'll be doing cross-country air travel, so I'll be test driving some in-hotel-room work that uses some body weight. Very cautiously!!!!
Today I got back on the exercise wagon. I got up at 6 am to exercise, doing Leslie Sansone's 2 miles of intervals DVD, followed by my PAL-compliant home dumbbell weight routine. Then had breakfast with a friend before hopping in the car for my drive to see the grandbabies (and their parents, of course). Stopped three times for pit stop and lunch, parking far enough away to get some mini walks in. I'll do a Lebed opening before bed in a little while. Oh, and I almost forgot--did lots of 'hop like a bunny' with my granddaughter, enough to count as serious exercise!
Hugz, take care of those tape wounds. How annoying, and I hope it resolves soon.
Purple, I hope you get the Lebed video soon!
Carol
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I hope so too, Carol.
What is :PAL-compliant home dumbbell weight routine. ?
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I would like to know the PAL complient dumbell routine as I think I over do things at times
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I am thankful for this group of ladies that have been with me through my good times and bad.. for my family that has supported me and one more day I can watch my grandchildren grow.. And most of all I am thankful for no leak and healing so soon I will be able to exercise with all these wonderful ladies.
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Gma, it's great to hear that your leak has stopped and that you are healing!
Purple and Proudtospin, the PAL-compliant routine I am doing is one that my trainer learned from Cathy Bryan, who gives workshops to personal trainers based on routines used during the PAL Trial. In the gym, I also use weight machines, but for when I cannot come in, he worked out a dumbbell-only version for me. The University of Pennsylvania researchers who ran the PAL Trial give their guidelines document to personal trainers, but not to patients, because they fear we will hurt ourselves if we do not work with a personal trainer.
So, that's a dilemma. In the Philadelphia area, it's possible to sign up for a group program run by the UPenn folks, and many LE therapists are comfortable designing strength training routines that comply with the PAL guidelines. The idea is to start out with very light weights (just one measly pound) and move the weights up very slowly, and in very small increments. No bodyweight moves (no pushups, no planks) and no resistance bands. If you can work with a personal trainer even once or twice, a good trainer will be able to give you a basic strength training program and show you good form while doing it.
My routine includes a chest press, bicep curls, bent-over row, and triceps kick-back for the torso and arms. I also hold weights in my hands while doing calf raises, squats, lunges and step-ups. Form is so important for all of these--for example, we do not want to let the knee extend beyond the toes in a lunge, to make sure we protect the knee. Above all, add weight intelligently (slow and small), and if you miss more than one session (shooting for 2x per week), reduce the weights to the amount you were lifting in the last full lifting week. Monitor your LE, and if you have any kind of flare within a day of a workout, stop the strength training and check in with your LE therapist for guidance..
And...warm up doing 5-10 minutes of moderate cardio before lifting weights, and then stretch all these muscles when you finish your weight lifting.
I wish we all had access to the UPenn group sessions, or that we could all bring Cathy Bryan (who was one of the PAL research team members) to our areas, to train the local trainers. Her workshop really is wonderful. I asked for and received financial help from several area hospitals to bring her to w. Michigan. Anyone who is ambitious enough to organize such a workshop in your town, PM me and I'll give you lots of details and help.
Carol
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