GRRRRRRRRR I HATE LE..........
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Oooh, nicely stated, Hugz! No argument here…
Binney
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So, Hugz....tell us how you REALLY feel!
I hate it too. Seriously.
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I hate it too. It is NOT fun.0 -
That is what I think of LE too.0 -
GMA, Yah that red face describes it to the tee. Especially when you punch yourself in the nose doning your sleeve. I have fixed that now with a slippie garment donner which has become my best friend. Hers a hint that I just figured out 2 days ago with the slip pie. The slippie is great for donning. Once you hook the end onto a door knob and pull slowly off it wants to drag your sleeve off at the same time. Heres my hint.To stop this from dragging off I fold the top band of my sleeve over(band side thats under the armpit) and hold that as I pull off.and…………I use my chin to hold the sleeve down also. Works great and I get a chin work out to. Bonus, hee hee!
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I'm having frustrations right now. I still hurt from the surgery and if I move certain ways, it pulls on the open wound..... I tried 2 days to get the sleeves on and then I gave up. Going in to my LE therapist thursday and see what we can do to get these stupid sleeves on ... Luckily, its just my torso and upper arms at this point.
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GMA, hope you LE therapist can help
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Awe GMA. Those sucker sleeves are nasty to put on. If you have a slippy made of parachute material sleeves glide on and it is so easy to smooth the compression out with a rubber glove once donned. See instructions above for pulling off slippy.
Sending over my magic wound healer, Just waving my wand as I speak. It should arrive in a couple days.
Still be gentle.0 -
OK... so I just passed my 5 year survivor marker and instead of a gold medal, I end up with THIS! As if I'm not enough of a FREAK with 1 breast I now get to stand out by wearing a sleeve and glove for the rest of my life.
Just visited the Lymph Clinic yesterday... got measured... not looking forward to someone massaging my lymph nodes for 45 minutes 3 x a week for a month...
I cried at the clinic. Of course I should be grateful because I didn't die from BC. But today, I don't feel that way.
Thanks for letting me vent.
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Vivkilynn, vent all you want! I am so sorry you joined the LE club.. Its not fun, but controllable. You might want to check out http://www.stepup-speakout.org/ to help you get through this. Any questions, ask away... someone will have ideas on how and what to do....
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I hear you Vickilynn -- After surgery, chemo and radiation with little to no problems, my prize is a sleeve?? WTF!!!!! Not only do I get a sleeve, now I am on the hunt for a compression camisole or bra. No offense ladies, but I don't want to join your club. I want to be done with this and I want my life back and I want to be normal again and I don't ever want to see a doctor, PT, hospital, pharmacy or take another pill in my life!!! Whew, now I feel better. Thanks I needed that!!!
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Thanks for the info GMAFOLEY and understanding NOMATTERWHAT. BC.org has been there for me since diagnosis, through surgery and chemo and I still keep in touch with my Chemo Sisters from 2009. You're right... never wanted to join this club either, but I'm glad you're here.
I haven't read back too far in the discussions, but sure would appreciate any advice re: sleeves and gloves and brands to look for. I will be going back to the LE clinic on Wed. She's getting me a prescription. I guess most insurances don't cover them.
And another question. I have it one arm (guess I've had it awhile but only painful the last few months and disruptive because of weakness, size increase, etc.) and across my chest. Problem is I had a single mast. and the clinic didn't have suggestions for compression for just half my chest! Anyone else have this situation?
Thanks.
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vickilynn,, we are sisters! I, too, am an uni MX with truncal LE. It has been a tough road trying to figure out what to do. My LE therapist suggested compression tops,,,, no specific brands,,, those didn't work. I am petite and they do not make them small enough to give me compression where I need it. And remaining breast got in the way too. It is not easy to figure out how to compress one side without annoying the remaining breast.I have ended up using swell spots, these are compression pads, and putting it inside either a compression bra or a breast binder from EAB Medical. It is trial and error to find what works for truncal,, and I learned everything I know right here!!
http://www.stepup-speakout.org/Lymphedema_garments.htm Scroll down to the bottom for EAB Medical. There are breast binders and binder bras here. Get the LINED binders. More comfy. I have found that it is not too tight on my breast and still give compression with the swell spot for the LE side. There is also a place for compression bras,, I have found WearEase to work for me. Compression bras are quite expensive. If you buy online, be sure and check their return policy. I think I got mine from CureDiva when they had a sale. MetroMedicalonline and lymphedema products are also good sources.
Here's a link where you can see the Swell Spots. I started out using the "breast" one,,, but they changed the design and the new one isn't working well for me. So I bought a Thora-Thigh and I'm customizing it! There is a place where you can get custom swell spots made, and once I perfect my creation,,, I might do that if it is not horribly expensive. http://www.lymphedemaproducts.com/products/preformed_solaris.html
As far as insurance,,,, coverage varies widely. What you must do first,, is get a RX from your doctor. Get Rx for Compression bra,,, swell spot,,, sleeve,,, anything else you need. Then submit and see what happens. With mine,,, it is covered,, but since I bought it online,, it is a "out-of-network" provider, so the reimbursement is less. But still,, some reimbursement! You might find an in-network provider and do better!
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FYI - WearEase has a weekend special - free shipping. I like their "Sydney" compression bra for mild truncal LE. Works especially well w/Kinesio taping.
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Any tips for me? Both my elbows and upper arms are swollen and hot....more worried about the side that had 13 nodes removed and showed LE from the get go, had my LE under control and now this!
Any ideas for the heat I am feeling?
I am waiting to hear from an LE specialist from the hospital, but no idea when I will get an appointment, arms feel like I have sunburn
I hate LE
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Thanks for the adivce and links. I start therapy tomorrow. Been doing lots of research and found all the things I was doing to relieve the pain and help the swelling were wrong: heating pads, 3 x a night... hot bubble baths (of course the bubbles can never be wrong!)... aerobic exercises with lots of big arm movements (Sweatin' to the oldies!)... vigorous arm massage... AH WELL. Live and learn and study.
I just feel like I have the flu - achey all over. I suppose that's LE too as I have no other signs of flu.
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Vickilynn, how long have you been achy all over? If this is only the last day or two, please do get help right away. The trouble with lymphedema is that stagnant lymph fluid in our tissues is the ideal breeding ground for bacteria--warm and protein-rich. Which makes us at a very high risk for infection--especially cellulitis--which can start with simple flu-like symptoms and can spread like wildfire once it takes off, becoming rapidly systemic. PLEASE, PLEASE read over the link below and if any other signs of infection appear, GET HELP RIGHT AWAY. No "wait and see" on this one--it's an emergency.
http://www.stepup-speakout.org/Emergencies_and_Med...
Hoping you steer completely clear of cellulitis, but better safe!
Keep us posted. Gentle hugs,
Binney0 -
Glennie-I also have an issue with truncal edema and getting compression to site. I looked at devices you linked to but can't imagine how these would work. I am smaller frame, had conservation not mastectomy, and worst area for me is extreme lower right side of left breast so where bra ends and cleavage starts. Compression just displaces edema lower doesn't move it, though foam chips work ok inside bra at this side, I couldn't go to work or elsewhere with these. I have heard a Spanx camisole can be a less expensive alternative to other garments. I am curious have you ever tried this or know anyone who has?
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I have not tried Spanx,, but I have heard it mentioned here. I'm sure there are others who have used it.That does sound like a difficult spot for compression. Do you have an LE therapist who could help you?
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I, have Spanx Camisole.....bought it on QVC a real pretty one with the top being lace......when I went to my PT she was surprised at how good the compression is and said to take it down a size which I did......it is very comfortable.....Liz
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I have one of those Genie Cami Shaper things and I would say it's a mild level of compression. It is comfortable. Has pockets for if you use foobs. Unfortunately my LE is over toward the armpit and the edge of the cami cuts right across the middle of it, which is painful.
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BINNEY... thanks for the Heads up on cellulitis. I went to the website and read up. I will know to keep an eye out.
I was so nervous today... Had my first LE massage today, ordered my sleeve and glove, got instructions for home massage and exercises. REALLY liked my LANA Therapist. So gentle and soft spoken and knowledgeable. DH sat in with me and she made sure he understood they lymph system and what was happening and things to watch out for.
Feeling better-informed. Did lots of reading thanks to your shared links. Still not wanting to do this for the rest of my life... but there it is. I'm Stage II - so I'm still in the manageable group. Sure hoping this works and eases some of my pain.
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Vicki, don't you love when you can help yourself with no pills ? I have been achie as all get out and recently worked my way up to 30 min on the treadmill.....much better in the legs and sure did help.
keeping yourself in the manageable stage is good
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So... after my first LE massage... somebody assure me that it really works. My mind is not really grasping this today. It feels like some bogus treatment where they speak softly and wave spices over your body and say, "Go and be healed". Anybody else ever feel that way?
You're right PROUDtoSPIN. I was doing light aerobics 3 x a week until a week or so ago when I read I wasn't supposed to be without a sleeve. Maybe that's why I'm ache-y... my body got used to the weekly routine of exercise and now it's protesting. No other obvious signs of infection.
Well... I will get my sleeve next week and resume my exercise routine if I can get the sleeve on. It sounds like from reading these posts that donning the sleeve is one of the biggest issues!
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Vickilynn,,, I know how you feel. After having other types of massage,, where the muscles really get worked,, LE massage feels like nothing! It is supposed to be similiar to stroking a cat! But it seems to help!I'm usually ok with putting on sleeve. I learned to fold it inside out in half,, and then put it on, and tug the folded side up. Hopefully your therapist will show you the best way and there are lots of tricks posted on here if you need more help
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Hi Vickilynn,
So sorry you are having to deal with this
Ask you therapist what she thinks of daily dry brushing to help keep you lymph fluid moving after she finishes all your sessions. It has made a HUGE difference for me. I had daily aches, could not be in a car for more than an hour, for 3 years before I started and it has been a lifesaver for me. I still have to wear my garmet for certain things and elevation will still swell me up but as far as day to day life, the 10 mins I spend in the morning is well worth it! I hope this helps you.0 -
Hi everyone, I was hoping not to have to introduce myself here, but maybe I won't be so lucky. I've had some cording pain in other pain in my arm for quite some time now. My PT (LE certified) has been great. She suggested, based on my description of how I'd been feeling, that I wear a light compression sleeve for 4-6 weeks to see if it makes me feel better. I had not had any swelling - she called it stage 0.
The sleeve definitely helped. For the most part I've been feeling much better. However, last Thursday I noticed that my wrist is a little swollen. No edema - skin comes back immediately when depressed - but I can't see my veins, or the bones that I can see in my other arm.
At the same time, I started antibiotics for a sinus infection. Could LE flare as a result of an infection elsewhere in the body?
Jen
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Jen, it could be that the sleeve was pushing fluid down towards your hand. You may need a gauntlet or glove. I would check with your LE therapist. Mine told me that if my hands don't "match",,, if I can't see the tendons, etc, the same in both hands, to let her know right away.I'm not sure if the LE flare could be due to an infection elsewhere in the body. Hopefully someone else will come along and have an answer for that question.
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Welcome Jen, I have been wearing my sleeve for about one week now and my right arm does feel a lot better. I must have Stage 0 as well, because my PT told me that the cording was worse than the lymphedema at this point. My PT also suggested that I get a compression mastectomy bra to help stop the lymphedema that has started forming in the right side of my body. I bought a mastectomy compression bra from CureDiva. What is your advise Glennie??
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Sadly, my advice may not work for you. I use a breast binder from EAB Medical and a Swell spot to control my truncal. For me, it is the most comfortable and effective. I go have a WEar ease compression bra that I wear sometimes, but it is not so comfortable to me,, but I'll wear it when I want to wear an outfit that would work better with a bra,, as opposed to the breast binder which is a little thick,, and needs not so tight clothes to conceal it!0
