Kicking LEs butt!! Exercise & Self Care Log
Comments
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finally - what about walking at a mall?
I used to have access to an indoor track, but unfortunately all of those are closed now in favor of more weight machines or recumbent bikes. In this metro area of over 6 million people, there are only two facilities left that have indoor tracks. Both are YMCAs and both are more than a 40 minute drive. Practically that means I would never go.
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FYI re: what a PT assistant (PTA) can do legally. Any PT or PTA or OT or COTA (OT assistant) can do lymphatic proceedures, because it is within their scope of practice, and covered by their liscense. You do not need to be certified. There are a number of areas that I am an expert in, because I trained with amazing therapists. I assume this PTA has been working with LE patients a while and is very skilled. There may be good therapists that are not certified, but if I was looking for a LE therapist, I would chose one who is certified over one who isnt. I would not be concerned about a PTA b/c they are supervised closely by the PT, who is certified.
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When I broke my arm, I went through PT at a well known, widely located PT company. They have maybe 10 locations & did a great job with my broken arm. However the PTs there were all very honest that they only had one trained LE therapist in the entire chain of locations and no one else really knew the "drill".
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minus2, that is typical. A good PT clinic/clinician should be honest about what their skills and abilities are. That's part of our code of conduct for our profession.
Since I've had my last surgery I have been doing LE coursework, and I am looking into certification. I did a few beginner courses to get more info and to know what to watch for in my own body. I have 3 limbs at greater risk, and most LE treatment is upper extremity based.
That being said, I need to go take a quick walk!
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Minus...seeing that you are in the Houston area, there are several certified lymphedema therapists at TIRR. I have been working with them at the West U location to learn MLD and to also work on range of motion
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Boots - thanks but I have a great therapist out at MD Anderson/Katy. My RO there was the one who hooked me up with her. My LE & the broken arm/frozen shoulder were two different issues. But I'm glad to know about TIRR for future reference
After my first surgery in 2011 I took myself to Memorial Herman's Lymphadema & Wound Care Center in the med center. Interesting place. It's where the hyperbaric chamber is located. Dr. Maus is great.
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Thanks for the info. Always good to knowabout services that are available in the area and especially ones that others have a good opinion of.
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I thought of walking in a mall but I'm outside town - the mall is about a 40 minute drive for me so ... a lot easier to just step out the door.
I looked at a piece of equipment today the lady said she'd give me a discount on - just $65. Its self-resistance, not plugged in (batteries to run heart rate monitor, etc). It's a bike, or stand up elliptical-type, with posts to hold for the hands, or poles to move with resistance, so it's kind of a 4-way machine. Maybe worth it, though finding space would be a challenge (its smaller than most things).
Anyway, I unwrapped, and got in the pool for about 40 min. Mostly slow swimming that has about the exertion level of treading water. The drop is steep, and there is a REALLY NARROW area that gets my shoulders underwater and not my head, lol, so slow easy swimming was better. It was mostly just figure-8 type swishing with my arms. Felt GREAT! With all the repeated and overlapping no-swimming rules through surgeries, biopsies, rads, I've only been a few times in a year.
Took a shower, put on itch cream at the PT's suggestion (actually she suggested powder but I only found a cream so far, it's an aloe/menthol thing), lotioned up, and rewrapped. It really wasn't too difficult, although I didn't do it as well as they do. Took about a half hour. But being able to shower, swim, gently rub the itchiness, was more than worth it.
I have to allow extra time to get dressed in the morning. Nothing from before fits, so I'm trying to put together a new wardrobe and a new look. It's a challenge, lol. But hopefully I can get up an extra half-hour or so early and get in a quick walk.
I must, must, MUST figure out how to exercise and try to recover and hopefully improve on where I was before this started. I was overweight, but I could do stuff, and had a degree of stamina at least. Besides, being in better shape, I might be able to modify some of my old clothes and wear them again (no recon, btw, so that whole thing really is a challenge)
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2Fun, good to know, thanks.
The assistant wrapped and measured, and taught me to wrap. I know she's been trained to wrap. She just said she can't do the MLD, so then I guess she just hasn't been trained. I think it's all good. If that's an important part of the wrapping being effective, then I want very much to get started, but I've been told the LE therapist will do that on my next three visits, and teach me as well.
So with being able to rewrap (hopefully effectively enough) ... I am MUCH happier than I was after my first visit.
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itfinallyhit, I'm glad you are feeling good about your therapy place. It will be good for the PT to teach you MLD.
All of you in large cities have so many more resources than those of us in smaller cities. I can't imagine what those of you in rural areas have to go thru to get good treatment.
I was always over weight, but always strong and flexible with excellent endurance. Now, even tho I have kept off 15 lbs, I am still overweight and stiff and slow. I had planned to bust my butt the last 8 weeks to get into shape b4 July 12 surgery, but I am still slowly working my way back into a stronger body. It will take a while I suspect!LOL
Keep at it ladies, we can do this one day at a time!
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2fun. I know you will get there even if it's past your surgery. I'll be in your back pocket.
hiking easy trails and gentle swimming around ...well it's actually more like playing in the water but 45 min at least. Im watching diet to but allowing two glasses of wine a day. As long as I'm moving I'm satisfied.
Ohh I got a tiny rash from my le sleeve from rubbing against my skin and now I have to watch it like a hawk. I'll put anti chaf stick on it or try scar silicontape when I go for next hike but now I'm afraid I can't do more than a hour at a time for hike. Will get my buddy to check rash every 15 minutes.
Of course nerves are cut so I couldn't feel it rubbing. Ugh dang le, can't even exercise without it rearing its ugly head. Who knew a sleeve would rub against my underarm causing a rash. I think it was because I briskly hiked 2 hours that day and played in pool for 45.
I'll be watchful as I still have 5 days left in the mountains and don't want to spoil my exercise regimen.
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I hope your rash calms down, hugz. And sounds like you're making progress, 2Fun. It does seem to come slowly.
Still no walk today - sick baby chick that ended up dying, poor thing. In years of keeping hundreds of chickens, ive had so few ever just get sick - just one hen really, and one baby that recovered. Everything else I lost was predators and accidents. I just hope it isn't something that can affect the others. Just have a tiny backyard flock now, and can't afford losses.
I did get in the pool and jog, hop, swish under water for just over an hour. I wasn't going to go that long but it went faster than I expected. Maybe timer next time. I felt it in my muscles this time, but hopefully no problems. I feel fine now. Hopefully can get up in am - another full day tomorrow. A friend is visiting from out of town.
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itfinallyhitme. . .check out the LE Diet. It's essentially an anti-inflammatory diet and the book explains how to follow it. This was recommended to me when I was diagnosed with Truncal LE last year through the other LE Board. It's something to consider. I'm not great about following all of the recommendations (did at first) but I follow some of them all of the time. My LE disappeared on this diet and now seems to only reappear if I eat certain foods or when I have surgery/injury. I know it does not work for everyone. Best wishes.
Scottie
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great info Scottie! Thanks! I think most disease processes can be halted or slowed following an intimate inflammation diet. Can wait to look at this resource in more detail.
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itfinally. Wow your really enjoying the pool so much that time slips by. Yes a timer is good. Me I'm not a true pool person even though I know it's good for le. I did 45 yesterday and it was so boring to me. I watched clock and time dragged on. Maybe if I had music in my ears it would be better. I don't really swim,I walk and splash around tread water side stroke a bit. Everything with head above water. I admit it burns calories major so I will do it when I'm on vaca with pool. Easy trail walking is my deal!
Having company can sidetrack us. Maybe have them go shopping/site seeing or join you while your swimming. It could be part of entertainment for them. Just explain that it's so necessary for your medical condition.
Sad about chicks. Anything that dies so young touches our hearts cause there so adorable.
Scottie. Yes I believe in anti inflammatory diets. Thx for reminder. This is something I should do even for arthritis. I could see this being good for my le to.
Rash is going brown so it's calmed down I'll only walk for a hour to lessen it breaking out again. Pretty sure it was my top of le sleeve and maybe sweat combo rubbing.
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thanks, I'll check the diet. I'd looked for some guidelines for LE and didn't find much, so I'll be happy to check into that.
And no, the pool bores me too. I wanted to listen to a podcast or something but it was near-drizzly and didn't want to take my phone out. I basically tried to find different ways of moving, resistance, studied the landscape and planned things I might like to do, and tried a dozen mental tricks to keep going. But I did really enjoy the moving and the freedom of not being wrapped.
Hiking actually sounds like a lot more fun. Today I did nothing. I planned to, but my sleep was very interrupted last night (almost none) and I met my friend again this morning and spent until mid-afternoon with her and another friend. I came home and fell asleep, woke up near midnight.
But my wrapping isn't holding (swelling really only in upper arm) and I think it's not helping today. But I kept it elevated the whole time sleeping so when I woke up it was really as good as it gets. I think I must be very early stage if it can improve so easily? (If keeping my arm elevated for 9 hours is easy, lol)
My LE appt is at 10am. I'm going to try to rest a bit more, hopefully finally walk while cool outside, though maybe not far, because I'd also like to get in tomorrow's pool time, shower, and possibly rewrap before going to appt. that's going to require an early start. I'm not even sure the pool is warm enough at 7:30 am. But after the therapist wraps I'd like to keep it on longer than a day.
I'm actually wanting to ask her tomorrow what her goal for reduction is before getting garments. I'm wondering how she set it since there is no measurement pre-swelling. I was actually in really good shape when I went in the first time ... she hasn't even seen it the way it can swell. So I want to make sure we are on the same page
If it's a matter of comparison, well, the other arm swelled a bit the other day. It's rare in that one though. And I honestly don't want both of them wrapped at once. I need to be able to take care of myself
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itfinally. I was thinking she could get a rough comparison with other arm but it swells too. On that note you may need sleeves/gloves/gauntlets for both arms especially if you don't want to progress in the better arm. Awe your a brave soul if you will be dealing with two arms eventually. You have come to the right place, here for support though. These threads are my lifeline. I think after three weeks is about the normal to get swelling down if you have therapy every day and are wrapped before you leave.
After about five days wrapping I got rid of elbow slight swell. I got it from a new sleeve that chewed out my inner elbow after exercise. Dang it anyway. Glad I learned how to wrap although no expert.
Playing in pool which is like water walking basically -one hour. Hike 1/2 hour. Then 40 min brisk stroll all while watching that my underarm rash wouldn't get rubbed raw. Slight scab forming so that's good. Had to hold my arm away from pit when walking. Not comfy but doable. Sheesh. No way could I squeeze this all in if I wasn't on holidays.
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Ok ladies I'm new here! I have been going to PT for 7 weeks for LE and have 4 more scheduled. I want to scroll back through and catch up on it ALL!
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Vara. Welcome here. We will be looking forward to you posting your exercises. No competition here. Just move.
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MUCH better appt today. I had the CLT, and I think we communicated much better. She did MLD and showed me how, though I'm not ready to do it myself quite yet. She's going to show me again. Having her teach me wrapping also was better, because the two highlighted different things. And I think we are probably about ready to order garments soon, since we began with near-best-case in my arms (I had rest/elevated them a lot for several days before my first appt.
The real surprise is something I didn't understand, but had seen, and she knew immediately when she saw it. My biggest problem is really adhesions of the scar. I get swelling above it, and it is TIGHT. So she showed me how to massage the scar. And when she had done the MLD my shoulder was MUCH better, less swollen and softer.
I don't know if breaking the adhesions will mean my arms won't swell anymore. But anyway, I have a way to move forward. I'm really, REALLY not wanting to have to wear compression on my trunk. But seeing a drastic improvement rapidly from the MLD is encouraging. I'm also down some from the wrapping, at one point she took the measurement several times because she couldn't believe it was down that much. It also explains the swelling I KNEW I was seeing in my upper abdomen. My belly has actually shrunk a little, but my surgeon thought it was just comparison with my bellyfrom not having breasts anymore.
Only 20 minutes in the pool today. I overslept and had to make an extra stop before my appt, and didn't want to be late. My LE therapist supports me exercising, few restrictions (avoid overly repetitious movements, no heavy weights) but she is of the mind to monitor carefully, find what I can and can't do, and avoid anything that aggravates it. I'm REALLY interested in upping my exercise though!
Overall I'm so much more pleased with how things are going. We really didn't communicate well at first, and I think maybe she thought I was grabbing all sorts of random silliness online.
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Movement has some interesting side effects. Five days a week I'm either in a Silver Sneakers class or in a Water Aerobics class. I was walking on a treadmill before the pool opened for the year, but will save that for next fall. I am doing MLD usually once a day.
Questionable SEs - Minor aches & pains. Socks don't work well with my dead feet. A big chunk of my day or evening is required - dress, undress, exercise, shower, dress again - not to mention drive times.
Positive SEs - I've managed to loose the 10 lbs that made my clothes too tight. I can sit & get up from a chair much easier. I sleep better. And my appetite is under control. Although some of that may be the heat, I am usually eating one meal & one snack and am not hungry. AND - no LE flares.
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we'll not wrapping my hand didn't work. I'm glad I noticed. I never had LE swelling in my fingers before. But with the arm and hand wrapped, they swelled up like sausages. I took the wrap off. It's too late to call the therapist and I don't go back until Friday.
I guess I'll go over some more info on MLD and maybe attempt it after all, then see if I can find enough stuff to rewrap, including fingers.
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itfinally. So glad your therapist came thru for you. Looks like she is a keeper after all. My fitter measures me first thing in the morn when she opens because that is when I will be the smallest. Mornings. I wear my compression and take off as soon as she get tape measure out.
One hour walk one hour swim.
Minus. Your doing fabulous.
I think today is a win for most of us!
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itfinally, don't wrap your arm again unless you can wrap your hand effectively. Wrapping above the hand traps fluid below the wrapping, and getting it out of your hand is pesky. Keep your arm elevated as much as possible. Also, walking is great exercise, but not while you're dealing with a flare in your hand, as gravity acts on the LE as you walk and can make your hand swelling worse. Swimming should help, and definitely elevation until you see your therapist again on Friday.
Good MLD video here:
Steep learning curve, this, but you'll be on top of it soon--hang in there!
Hugs,
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thanks Binney, I will watch the video.
Already re-wrapped before you posted. I kept hand elevated a lot, 1 hr 15 min in pool, and hand is fine. I'm getting better at wrapping, but I'm better at the hand than the arm. Just had to reuse old gauze since she didn't send me with any this time. Hand is ok so far (after several hours) ... hopefully I'll wake up and check it during the night.
Working on breaking up adhesions.
For ome reason I seem to be so tired today. Fell asleep early last night, slept late today, took a nap. Not yet 10pm and I don't think I'll last much longer. I have tried to make my time in pool very active. Maybe that's why.
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I had a lumpectomy a/f chemo & only had sentinel node and 4 other nodes removed, so the lymphedema in my breast was a bit of a surprise to me & the Drs. The running theory for it's presentation is my too soon return to bootcamp classes after radiation.....the PT advises exercise, but lighter weights. So for now I'm just spinning....;)
The PT definitely worked to a point. I wanted to share what has brought the final area of swelling down... KT tape. It REALLY helped. I use it at night and my breast feels completely normal in the a.m. The PT was a little apprehensive about it, advising that it could get uncomfortable and areas would pinch...not my experience. I just bought on Amazon & finally used it. It compresses the area, it's flexible enough that I don't know I have it on.
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Kansas - read about KT tape ... interesting stuff. I can't find info though - is it washable and reusable, or meant for single use?
I don't know if it has the right elastic properties for the rest of us. I do notice they say it is used because of lymph accumulation, but their site says it LIFTS the skin to allow lymph to flow, rather than compresses. Which makes a certain intuitive sense, but depends on a healthy lymphatic system? I'm guessing? Anyway, I certainly do love the idea that it seems to be not needing other layers, can be worm comfortably for days, can get wet, and so on.
I'm just curious if it's washable. Don't worry, everyone, I'm too new at this and too early in the process to take off and do anything different from what my CLT advises. But this stuff sounds like it's worth knowing about. Especially since I don't know what's going to happen with the swelling across my chest, above the scar, and I'm sure now it's not in my mind that I get lower truncal swelling that comes and goes ... perhaps that's part of the lymphatic clearing, from what the CLT described to me as the overall process.
This whole cancer thing has made me feel like I need to know everything in order to make good decisions. I've had some excellent physicians, and some that would have made disastrous choices for me if I'd allowed it. It reminds me of when I had a legal situation and trusted my attorney, with terrible outcome. We need the expertise of professionals, but at the same time, we have to know a very great deal to evaluate and either accept or reject their guidance. But I admit, lymphedema is the topic I come to it knowing the least about.
And no walking AGAIN this morning. It's raining. But I'm going to a second-hand shop to look at a piece of exercise equipment I was shown. She's offered it to me very affordably, and it will fit in the air conditioned area of my home. Sort of a bike/elliptical stepper, with or without arm involvement. I think the pool is wearing me out every day but I want to add something not dependent on weather/time of day
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My LE/PT has used kinesio tape on my underarm, side & back. It works quite well, but doesn't last much more than a day, and probably not that if you get sweaty. You surely can't take a shower. It appears to be quite an art as to how to place the tape. Maybe something to ask your PT before you try it on your own.
But maybe somebody else here has been trained?
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Kansas - Is this what you're talking about? Found it on Amazon. Curious b/c I have truncal LE.
KT TAPE PRO Synthetic Elastic Kinesiology 20 Pre-Cut 10-Inch Strips Therapeutic Tape
List Price: $19.99 With Deal: $9.84 Free Shipping for Prime Members You Save: $10.15 (51%) 0 -
More information on kinesio taping here:
http://www.stepup-speakout.org/kinsiotaping_for_ly...
Very helpful for some, but not a DIY without training. Standard procedure is to try it on your skin in an unaffected area to test for adhesive allergy before using on the affected arm or breast/chest.
Hope this helps,
Binney0
