Kicking LEs butt!! Exercise & Self Care Log
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Thank you so much, Binney.
That was my mistake, yes, she did wrap my hand too.
The whole thing (shoulder to fingertips) seemed to be immobilized by the wrapping. At first I couldn't move anything. She had to help me get dressed, and driving home was a trick. Even getting into the car and getting belted in.
I've moved around in it. The sticky covering has rolled up from my forearm to rest above the elbow from flexing my elbow in my sleep I guess. I couldn't get comfortable. My hand hurts on top, between wrist bone and base of little finger. It just aches. Maybe it's the tightness, but I have no way of knowing.
I do know btw that none of you can give me answers about my situation in particular, especially online. I'm just concerned that what I heard from her in general doesn't match well with what I read here. And not to put her down, she's had training, but otoh I am concerned to make sure it was adequate and up to date, etc. I don't find much concern or knowledge about LE among anyone here ... just "oh, didn't so-and-so get training on that?" and no one is very concerned.
I think my situation is very mild right now. But I want to improve on that, if possible, and hopefullymake sure it gets no worse. And I'm not sure that will happen if I were to rely only on this person. I also want to make SURE nothing that happens makes it worse.
I'll call her about my hand. It does ache quite a bit. Thanks so much.
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Hmmmm and I just pulled out her card and see she is a doctor? PT, DPT, CLT. But anyway, I am looking for impressions and general thoughts. I'm very interested in the research regarding slowly progressing weights and exercise as a therapy. Just sitting around immobilized does not seem good to me
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well, apparently she and I didn't communicate well. She said I'm SUPPOSED to be moving. Thank goodness! But she never told me that, and it certainly wasn't an impression I got when walking out immobilized. She said it was "like a cast" but she may have meant that I must keep it dry
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FinallyHit, glad you clarified things with the therapist. Did she do Manual Lymph Drainage (MLD) before she wrapped you? Even if she doesn't want to teach you how to do it, SHE should do it at least several times a week until the swelling is down. Did she give you a time frame for your PT visits--how many days per week and for how long? Irrespective of the letters after her name, if she doesn't think she can achieve any improvement, then what you need is another therapist.
Your concern for exercise and getting fit again is very real, and everyone here would encourage you to pursue that. Here's some information about that.
Breast Cancer Related Lymphedema and Exercise: What You Should Know for a Smart, Safe Workout:
http://www.stepup-speakout.org/Handout%20doc%20for...
And here's an article on some of the research that's been done on lymphedema and exercise:
http://www.stepup-speakout.org/Weightlifting%20and...
I hope those give you some information you need to move forward with a bit of confidence.
As for the hand pain, do ask your therapist to address that quickly, as pain is not good for LE.
Keep us posted on what you discover!
Hugs, chocolate,
Binney0 -
Thanks, I'm going to look at those links.
No, she did not do any massage, drainage, whatever. She took measurements, checked my range of motion, and wrapped one arm/hand (glad she didn't wrap the other, it's not quite as bad and I couldn't function with having both wrapped right now and not able to take them off.
I'm supposed to go in twice a week.
She said I could undo and re-wrap the upper arm if I needed to. She said I could unwrap the hand if it got too painful. Her idea is not to wrap the hand every time - she's trying to see if I actually need a glove. I have a snug ring that I kept on until yesterday, and could switch hands, check to see if I had swelling.
Since I talked to her I've been doing fist pumps like crazy and my hand feels MUCH better. It's a bit uncomfortable, but not painful really
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Re: the PT s credentials. Current entry level requirement to be a physical therapist is a doctorate, DPT. Which is not a research doctorate or PhD. If they list credentials as PT,DPT, it means they got a Bachelors in PT. ( that's what I have) and then they went back to get the extra training. CLT is Certified Lymphedema Therapist.
As a PT myself, I can't imagine saying there is no chance of improvement. Especially first visit. I would go back for your follow up visit, and if you don't feel good about the therapist, I'd get another one.
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minus. Good job on the weight loss. Yup I can never stretch enough and muscles don't bounce back like before. That said I'm slowly improving.
scottiemom and newbies. Everyone here is welcome. There is no competition because we are all different. The idea is just to move around for health benefits and report in for motivating us and yourself. That's it! Simple. It works and if you run into problems we can help.
itfinallyhitme. Just jumping in here. Not to much time to scrutinize your post but if she said you could undo and rewrap this is wrong unless you have being trained to wrap and it would be daily.
It sounds like she is trying to do a therapy that usually lasts three weeks but you go everyday to get wrapped. After the three weeks then you get fitted with compression because you should be your smallest size about then. Hummm.maybe twice a week may work if you can keep wraps from slipping off. Not sure as I don't know your condition but I think your hand should be wrapped even if it's like a gauntlet style. Hope Binney advises. She's savvy.
TONS and Tons you can do to regain strength. I do PAL program, a university developed it for LErs Takes a while but worth it.
Once your cleared to exercise start with gentle arms stretches then start with maybe no weight or one pound weights and once you master it without swelling move up a pound. For example I'm slow with tons of arm injuries. I started sept 2o15 with no pounds and now am up to 6 lb triceps, 12 biceps. 7.5 bent over row. I do this three times a week one set of 15. Yup I said s l o w. If I run into a swell then I know which weight did me in and back off a pound or so. You have to play with it. If you stop for a couple weeks then start fresh again until you master. It should come back quicker though.
She must do massage every single time to get your arm down and lymph moving. Teaching you would be beneficial and essential.
If you have swelling in breast or back of pit area wear a small stretchy tight tight Cami to provide compression. It will feel better.
Yes pumping arms slowly 25 times helps. Drink lots of water. Deep belly breath.Go over your shoulders in water,it is best and walk in water with arms dangling to start. Slowly but steady here to avoid swelling.
See my tai chi breather thread I'll bump up to get your lymph going and to start moving a bit.
I'll try to bump up my wrap thread but I'm no expert. In fact everyone needs to wrap in an emergency. For example my inner elbow rashed out from my new sleeve and swelled a tiny bit. Last night I wrapped which brought swelling down and because I put cotton pad in elbow crease it gave it a chance not to further rash. I will do this for a couple nights till I'm better.
On that note if you have sensitive inner elbows go and buy the anti chaff stick runners use. I put this on inner elbows daily and it works like a charm except when I wore my brand new stiffer sleeve two days in a row. Ugh this le stuff is a steep learning curve. Don't forget to post on grrr thread where you can get it all out and rage all you want. Helps.
You will get there girl. Patience. We are here.
Ps reporting I gave it good doing 70 minutes cardio and weights. Heart rate excellent, workout. See you will get there. I was a couch spud long ago.
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70 minutes? Seventy? Oh my goodness, I'm exhausted just reading that. Way to go hugz.
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wow, very encouraging to see it's possible to get somewhere as far as building up exercise.
Well before I read here, I took her advice. It's my upper arm that's swollen (at least that I notice). Wrapping had slipped some, didn't feel tight anymore, and itching started driving me completely crazy., so I unwrapped it to re-wrap. I was stunned! My arm is a different shape! I measured it, which I'm no expert at, but it was definitely smaller. The crease disappeared. So ... I'm a little more convinced, though I'm still concerned that some things aren't as I would prefer. So I re-wrapped, worried I didn't really do it right though
I definitely have swelling in my pit, especially now that the arm is better. And I've been thinking my trunk is a little swollen (not just now but for several weeks).
Wondering if there's a brand of cami that works well?
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itfinally I would recommend starting with a underarmour COMPRESSION tee brand in men's only. if your a large go to at least a medium not a Cami if pit is swollen. Tee will cover pit. Womens doesn't work as the sleeve is too short.
Yeah to success!
Minus can't brag that much. 70 min was done not at once.
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thanks for the info, hugz! Sooooo much to learn, but this site is gold. :
And my left arm feels pretty good today. For the first time since surgery! I did have to re-do the upper arm wrap 3 times before I was satisfied with it, but that's not bad. Tomorrow I get to go back, and I feel like I can make it now.
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Hugz - I am correct in thinking that itfinallyhit should be doing MLD every time BEFORE she re-wraps?
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I love the drainage massage. I highly recommend those. My Lymphodema therapist also does some stretching exercises with my arm to help regain mobility. After the massage she has me do a couple of exercises on the gym equipment. I also started yoga at the cancer wellness center at my local hospital. My therapist was pleased to hear I was doing that. She also highly recommended swimming. But i need to make sure my drain holes are completely healed.
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I'm sorry, I know I'm not doing things as they really should be done. That's my concern.
The LE therapist hasn't done MLD, told me not to, and hasn't shown me how. And I'm not clear on what exercise IS allowed/encouraged, or not, I only know that being in water (I shouldn't say swimming - i "ride" a noodle that puts me about shoulder deep and I bicycle around the pool, and swish my arms through the water - that brings down swelling and feels great - but as long as I'm not supposed to get wet AT ALL I can't do that.
I'm going to ask her about showing me how to do MLD and how to re-wrap, and if I can't unwrap to swim then re-wrap, etc. Since I've seen a pretty dramatic improvement from wrapping, I'm on-board, and I'm willing to do whatever it takes - timing is good because I'm off for at least 6 weeks with school out. I'll stick with whatever I need to do. But I need to know it's the right thing, and what I've read in this thread had really made me question that.
I wish it wasn't so hard to get in to see anyone here. This appt took me 5 weeks to get.
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can a doctor refer you to someone to get in earlier if you want yo change therspists?
Can I ask where you live? I may know someone.
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minus. Le self massage would be helpful before she wraps because it will move stagnant fluid. I'm bad at this but go every month for a drain out regardless how I feel. It's important her therapist does this with each and every visit.
60 min walk. Beat the heat
Itfinally. I don't know why she isn't doing the massage. It's so gentle, literally like petting a kitty cat and believe it or not it works. That's because your nodes and pathways are just under your skin. No harsh massage.
Sorry I haven't digested all your posts yet. Do you have open wounds or drains so she won't do MLD? I'm wondering if she is just being lazy. There has to be a reason she isn't doing MLD on you.
The gold standard is measurements of arm first time you go, MLD, and wrapping if you need it. She should take some measurements after the full course of therapy is done and before she releases you to a fitter for a sleeve. How to self massage should be taught early on.
girls did I miss something else?
Ok well maybe your not suppose to get wet cause your wrap job will get ruined and would not dry allowing bacteria to harbour.
I would not go into water with wraps or garments there is no need to. Water is like wearing a full compression garment. It's the absolute best. Try to get shoulders under water. I walk in water like that. Looks goofy with just my head above water but who cares(edited later; ok I see she didnt want you to get wraps wet. That makes sense)
Yoga. No downward dog type stretches. Unless you have build up to this you could cause a arm flare. Stay away from push up type exercises. I do mine against the wall but I have trained.
About the jug of milk. Yes it's eight pounds and if your not use to it you could spark a flare. Don't use le arm for heavy stuff. I carry milk now. Started gardening maybe half hour or so this year and now garden up to nine hours. I take frequent arm breaks and switch yard jobs around to not tire my arm. I'm overweigh by maybe 15 lb but very fit. It all comes gradual.
Here is what I wouldn't do myself at my level. Carry 20 lb loads repeatedly. I would never ever help move moving boxes all day long. Many girls got le from moving because they weren't use to the weight and repetitions. I take breaks scrubbing floors and shy away from doing it if I can. DH gets asked to lift my heavy stuff including luggage
Just read your post that you had bmx and sore behind both arms. If you had even one node out on the non le side you may actually have le on both sides if it's not post op swelling. Watch for heaviness or weird feeling. Stingy. Maybe feels like a rubbery hard boiled egg behind pit. Look in mirror first thing in morn as day goes on and look for any puffy developing. Le usually is smaller in the morn.
Edited again. Ok I read all your posts and the replys. Here's my opinion. If therapist won't do MLD and teach you self MLD then I don't think she is qualified. Start looking for another person. Yes she is getting your arm down by wrapping but if she did MLD it would come down faster. While your waiting keep wrapping and pick her brains each time you go in asking if you did the job exactly right.
Binney has given you the downloads for starting to exercise. (Check in with doc first)They are excellent And i think it was some of our girls includingcarol57 our frequent flyer and frequent cardio /weights girl that made the handout who followed the PAL program herself. Girls correct me if I'm wrong!
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All good, Hugz--thanks for covering it all! Yep, Carol57 did all the research and made all the expert contacts to get it right. And BTW she has also authored a successful LE training video for nurses that is saving lots of us from the ignorance of healthcare professionals who have been short on lymphatic education. You go, Carol57!
Hugs,
Binney0 -
Still so much to learn - thanks everyone!
OK, today's appt I saw her assistant. Their only plan was to unwrap, measure, re-wrap. I did get her to show me and explain the how and why to do the wrapping. I did about half of it myself. So my plan is to unwrap once a day, go in the water (I shouldn't say swim, but moving my arms under the water), then shower (im guessing coolish water, def not hot, and rewrap, so that should keep me wrapped close to 23 hours a day.
When I asked about MLD, (the assistant can't do it) I was told that since I'll have the LE therapist my next three appts, she will do it each time then, and show me how to do it. I very much want oversight and guidance, but I also want to be able to wrap and massage myself, so we are moving in that direction.
The odd thing is, I'm not sure she would be doing it if I didn't ask. I was told that from the surgeon's referral, she didn't know if I would need MLD, so didn't plan on it at first. And TBH, when I asked for the referral (I think 6-7 weeks ago) I had had a few days of heavy feeling of fullness in the backs of my upper arms, but no other symptoms that I'd noticed at that point. My concern was that he was referring me for PT due to lack of mobility, and I wanted someone who was aware of LE issues. The swelling started just after that, so I was put on the therapist's waiting list.
Her plan is to wrap (and starting next week, MLD) and measure, and when it is reduced, get compression garments. So I guess my idea of "improvement" - lessening of swelling - IS something she is expecting. I'm also interested in range of motion, and eventually some strength and stamina, but I realize these will have to be done carefully.
So I'm thinking I may be ok for now in this process, though I'm really not happy that she simply didn't plan on doing MLD. My measurements are slightly increased overall, though by very little (could be difference in measuring). One finger was quite puffy when the wrappings came of, but the finger at the base wasnt swollen, just the part between there and first joint.
I'm hoping MLD and movement in the water will help. I also pump my fist pretty regularly, and elevate it as much as I can (which probably adds up to an hour and a half a day).
I have more reading to do.
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I think it's awesome the work you all are doing here, getting info together, the pics I saw, soooo much helpful info, and when it reaches the medical profession it has the potential to have so much more impact. Thanks for all y'all are doing
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Finallyhit, that sounds like a plan! Keep us posted on your progress, please!
Gentle hugs,
Binney0 -
Finally - Glad it sounds more promising. Be sure to keep your shoulders under the water while you're moving your arms as Hugz suggested. Maybe figure 8's?
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thanks for the suggestions. I was wondering what exactly I was going to do, since I usually bicycle for my knees, but it keeps my shoulders out of the water. I may need to stay in the shallows then, maybe a slow jog with figure 8s for my arms. I'll see how it goes.
I'm also planning (can't see a reason not to?) to start walking again tomorrow, early before sunrise so it will be cooler.
I want VERY BADLY to do a little yard work - even just a tiny bit! - but I'm guessing I need to hold off. At least the walking is restricted to lower body and I can easily track exactly how much I do.
I'm wondering about things like foods, so I'll see what I can find to read.
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Finally - get one of those swim 'noodles'. You can recline with it behind your back & bicycle your legs. Your arms will still be in the water. Or pull up your knees from side to side in a reclining twist. Also if you are in deep water, you can do modified jumping jacks where your arms come up only to the water level.
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great, thank you!
I absolutely can't twist my knee, but I can do everything else. I'll give it all a try - wouldn't mind having switching up to do. I'm soooooooooooo looking forward to being in the water again tomorrow
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So - legs out straight and open & close like scissors. If you can bend the knees, pull up both legs & push out. There are lot of arm moves under the water. And once you build up some strength, you can use something like a Frisbee to provide more resistance. The hardest thing for me has always been to slow it down & go only 1/4 speed & weight of what my mind remembers.
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I would recommend webbed gloves for resistance to start with, as a frisbee will give you too much resistance. Have fun in the pool!
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Yes, a frisbee is for down the road. In fact you can just put your fingers together and your palms up and you will have plenty of resistance to start.
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itfinally. As much as you want to garden be careful because time slips away and the next thing you know it's been over a hour. Take an alarm and set it. Work with non wrapped arm only using wrapped one for balance. It's easy to get carried away in the garden because it's so therapeutic. Also gardening is hanging arms down......not good right now for you. Try 15 minutes. Rest with arm on couch elevated and try another 15. Be so ever careful.
On vaca and played in pool. Lots of walking with shoulder under water. Moved arms back and forth and up and down against water. Didn't overstress my arms. Wanted to do more but am being very careful. No bad effects today so I will add more arm stuff tomorrow. Reporting half hour, in pool ,30 cardio and weights. Hard to get my engine going but look out when I turn the key over!
I didn't think an assistant could wrap unless she has creditials to. Interesting. Let us know more. Glad your sorting things out.
For bathing Go and get the long sleeve plastic glove from a farm store. they use it for deliving calfs. Use rubber band at Axilla to keep from slipping or get long sleeve plastic mitten for showering with a cast from medical store. Works ok. Gets the job done. I only thoughtof it when I had a shower with my sleeve on yesterday and used the mitten.
Knowledge is power
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ohhhhh so I could garden for a few minutes at a time? I confess, I've snuck in pulling just a few weeds here and there - I went and bought a tiny shovel so it's light to carry, and I can slice into the ground with pressure from my foot, so pulling weeds is just bending over and not much effort to pull them out. I will gladly set a timer.
And won't do when it's blazing hot. Great idea on the vet sleeve. I've seen it mentioned but had forgotten.
As far as the assistant, I know she hasn't gotten LE certified, but she mentioned going for training in wrapping. Honestly, she communicated much better, did a better wrap from how it feels and how it's holding up (though I did part of it), explained EVERYTHING to me, answered all my questions, etc. I've dealt with this rehab center before and I would expect everything is as it should be, as far as following rules. I hope so.
I made the mistake of asking hubby to wake me up to go walking while cool. No idea why, but he didn't. My sleep has been SO messed up lately, I usually fall asleep in the evening, wake up around midnight, then fall asleep again around 4am, so if I want to do something at 6am I'd need an alarm. I guess I'll plan on tomorrow. I live in Florida, so if not getting overheated is a thing, I can only exercise at night or early in the morning outdoors
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itfinally. I think what you did pulling weeds a few minutes at a time was ok. You have to be the judge and see how you feel. When you dangle your le arm down to garden make sure you do a few fist pumps also above head. Drink water, deep breath. How did you feel the other day is what you need to ask yourself. Keep that wrap clean. Again you could put vet glove on when gardening but I wouldn't use that arm overly much until your fitted with a sleeve because we tend to get carried away in the garden and forget our health issues. Play with it to see.
So happy assistant is willing to interact. Yes, yes and yes. Things are looking up girl
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