ALL THINGS Gloves and sleeves
Comments
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Okay, I have LE in both arms and it is well-controlled with garments and MLD massage. I had a checkup with MO yesterday. After getting painful blood draw from my foot, I was told it is really no problem getting blood draw in arm! Why aren't docs and LE community on the same page??? So frustrating. I don't want to mess with these arms. Who knows what they'll do to me during DIEP surgery.
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I understand completely - when I had to have my last breast surgery - i let them use the hand after a big fight - but they also wanted one bp on the same arm and said, "just one good bp on the arm then we will move it to the leg" - when I woke up - i had the cuff on my arm - it took a month to get the swell back down. Jeannie - hold your ground and have them put it in writing.
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Dejaboo - can't wait to hear how you like your Allegro sleeve - couldn't believe how economical they are! What got my attention is it is tighter on forearm and wrist as that is where I do have my swelling. Please report back when life slows down.
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KS1, thank you for the encouragement! I went to fitter today, would love to be able to be compliant and do the bandaging for 8 months, but not sure my overall prognosis gives me that much time. So I am opting for going ahead and getting day garments to use SOME of the time so that I can be functional for a few hours. I am on a roller coaster of emotions over this, but realize I HAVE to get SOME enjoyment out of each day or treating the LE and/or cancer has no meaning. Saw my MO yesterday who told me the Flexitouch is really really good, which gave me more hope as well. So trying to get into a routine of using it twice a day, along with MLD in areas it doesnt work on, waiting to get some garments that actually fit .... I was told 2 weeks for custom Juzo sleeve & glove ... fitter made adjustments in measurements to allow for wrist swelling and to improve compression across hand. Hope it works. Thanks everyone!
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Linda-n3: your plan makes sense to me. My therapist fitted me for custom garments when I was still in the "reducing" phase because I was going on a trip and wanted the freedom to be bandage-free for an hour or two a day. If you are doing Flexitouch/MLD twice a day that's a lot of time not wrapped. Have you tried keeping your hand gauze wrapped during the MLD. Kira suggested that and, for me, it seemed to help a lot in getting my hand under control. KS1
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Does anyone have any experience with the Readywrap arm sleeves? I am wondering how well they work compared to regular bandage wrapping.
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Hi everybody, I had been communicating with Binney and Carol but this time I decided to post my question to everybody. We flew to Switzerland from Sacramento, Ca last June 6. I decided to not wear my gauntlet/sleeve during the flight because I feel it's too restrictive. It makes my arm ache and hands cold. I survive the trip without problem. June 13 we flew from Switzerland to Greece with stop over in Germany. From Germany I noticed my arm started aching that lasted for a few days but no noticeable swelling. The pain has been gone for 2-3 maybe 4 days now, but today I think my left arm is bigger than my Right. Can I have swelling without pain? I have also gained weight since we came to Grrece. My mother in law had been feeding me like crazy that my clothes are shrinking. Can heat and humidity trigger lymphedema? Because it sure feels like hell here. We are flying to one of the islands this saturday and I don't know if I would have enough time to find and see a therapist tomorrow. I'm scared and all this LE thing is preventing me from enjoying my vacation fully. Any input and advice would be highly appreciated.
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p22nut5 - Definitely, heat can cause swell and you don't get pain with swell all the time, some people are different - I'm dealing with heat and swell as we chat. As far as weight gain - I know if it is swell if I gain 3-5 lbs overnight - if I gain gradually, it is what I eat. Swell can also be caused by eating too much with salt. Drink plenty of water, elevate when you can and use your sleeves but not if they cut off your circulation - purple fingers, numbness - Belly Breathe too - that will activate the lymph system to get rid of fluid.. Do you know how to do MLD?? Time to start doing that too if you can.
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p22nut5, gmafoley is spot on with her comments. It's perhaps not so much that heat and humidity trigger lymphedema, more that you have latent/ early stage lymphedema already, and heat/humidity triggers the initial swelling. Gma is right that manual lymph drainage is the tool you need to help nudge that lymph outta there. Try for the therapist, do whatever you can to make that happen, because nipping it in the bud will help. Are you wearing the sleeve? Often, early stage LE swelling will resolve overnight and with breathing/elevation etc., but you'd want to be in that sleeve during waking hours to keep it from coming back, especially if dealing with heat and humidity. If the swelling persists, a therapist would wrap you and show you how to wrap so you can continue the process-wrapping with LE bandages brings down swelling and it's probably the best way to combat LE when you get back in the airplanes for the return trip home. But it's not a YouTube learning bit--needs to be done in a way that's appropriate to your swelling location, and there's real technique to it. Therapist access is key, and it stinks, stinks, stinks that you find yourself needing that kind of help when you're on vacation away from home with an itinerary that keeps you moving. Wishing you some better luck soon!
Carol
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GMA has got the LE game down pat. 10 points GMA towards the Olymphics training!
I wonder if a shaper may help especially when flying. I know it is dang hot and uncomfy. Some find their arm is better when they are in a shaper.
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Thanks ladies, but the credit goes to the people here that taught me.
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Had an interesting lunch at the coast with DH. The host (very young) at the restaurant was trying to make conversation and he compliments me on my stylish sleeves (PINK Juzo sleeve and gauntlets).. I was cranky (big OOPS) and said they aren't a style, it is because of cancer treatment that I HAVE to wear them... I mulled that over and felt really bad so I went back to him and explained that I was trying to educate him - that if he sees the sleeves again on someone else - he will know what they are... He smiled and said - "I like to learn new things, thanks." I wonder if he thinks I'm a cranky old lady??? My mom always said to think before you speak.... I should have listened.
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GMA, Never mind you....I want the kid. So refreshing to have youth wanting to branch out and learn.
Sometimes we get the le gear question or curiousity at the wrong time of the day and it can be bothersome. It was nice that you approached him later and helped him understand. I am sure he was Ok with that because he had a really nice reply.
I decided not to wear my sleeve/glove a meeting last night. Wouldn't you know it, a friend I hadn't seen for a long time came up and gave me a big nice hug. It was great until she scratched my ungloved hand with her long nails. She apoligized and in my mind I said "oh no" It's not bad but it is red, I dressed it up. Moral of story. WEAR YOUR GEAR for protection. Even my pup hasn't scratched me yet but it just had to happened didn't it! grrrr. Opps wrong thread.
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Denise...and others. Here are my pictures of the Allegro all in one.
I will be sending it back. I need to decide if I should try just their sleeve...or will that be too long too.
This runs a little too long in the sleeve & over my fingers on the gauntlet.
It is also too tight for me in the hand, wrist & forearm area. It felt like a good fit on top...But I am not sure it felt like it would stay up as well as my Juzo wit Silicone dots. ( I did not wear the sleeve- just tried it on) I would like to hear how you think it fits.
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I don't mind where it ends past the knuckles because it probably will shrink in a warm wash like mine do especially if it is a cheaper product like Allegra. Also when you bend your hand sometimes the gauntlet will creep back away from fingers so maybe it is good that it is a bit long.
What I don't like is the wrinkles around the wrist it looks loose but you say it is tight.
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Yes Hugz, it is very tight at the wrist & wierd that it wrinkles. It was very hard for me to get it on....I think that if I was putting it on correctly...The wrist might pull up a bit more & maybe be less wrinkled...But Im not sure. But then the upper arm end would be even higher. It wrinkled all 3 times that I put it on
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Lighthouse: I tried Readywrap, because I'd heard high praise for them when used in the legs. They just came out with the arm product, and while the leg product has overlap, the arm does not.
My issue was with the gauntlet: I'll try and put in photos: I measure a small, but I have finger swelling and with a finger wrap or a glove, it simply didn't fit. I sent the photos to Solaris and got back a medium, but haven't really tried it.
Personally, I think it's kind of in beta testing, and they need to work out the issues with it, but it is inexpensive (relatively) and should give you control over the fit, although it's a bit hard to create graduated compession with the velcro closures, and it's only supposed to be hand washed.
Notice the "proper fit" on the palm
With a finger wrap
With a glove
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p2nut
It makes my arm ache and hands cold...
Your gauntlet may not fit right. Sounds like it could be cutting off your circ. Get this looked into or else try to stretch it. This may well be your problem. If you get the fit down pat you will be more likely to wear it on future flights.
Gma is spot on ...lots of water/ hope it resolves soon.
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kira
Is this something you wopuld wear ( the 2 ) overnight - OR for day use ?
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It's marketed as appropriate for both day and night wear: the ReadyWrap
I'd heard high praise for it for legs, I wasn't thrilled with it for arms
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Interesting, kira. thanks.
There was actually a woman I know wearing this ( I believe this was it) on her legs over compression stockings. DISASTROUS results, but only because the stockings were a total misfit and obviously cutting off the circ . - then further ' strapped in ' with this ! She has diabetes and is cognitively impaired. RIDICULOUS the way you get treated when you have no advocate !
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I had tried a ReadyWrap but it didn't work well for me, so I was told I could return it. I was very disappointed because it seemed like such a great idea - substitute for bandages that I could use by myself, get my independance back a bit , but no such luck. The velcro straps were too wide and did not cross over each other, so it was difficult to get a true graded compression - just 2 inch strips of compression at a time up the arm, had more hand issues.
Have been traveling for 4 days, using Flexi Touch twice a day, wrapping most of day, using Jobst off-shelf sleeve that has very loose wrist that allows for glove without too much constriction. Still not indepenent, still fussy about the whole thing, but having some good moments each day. DH has been superb with wrapping. Sometimes hand doing better, most of the time not. *sigh* Hope the new custom garments arrive when I get home and hope they work to control for a few hours a day to get me a break from this!0 -
Thanks everyone for the posts on the Readywrap arm sleeve. I did order one and have used for several days. So far, I really like it. It seems to work -- and is soooo much better than wrapping, so I think I will be more compliant. I agree that hand problems could be aggravated though. I definately need to use a glove with this. Thanks again.
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Hi ladies,
I'm finally sitting now in a place with Internet. Thank you ladies for all the advice. @ GMA...what is MLD? I had been drinking fluids and elevating my left arm. Now my left arm looks the same with my right. Although my right arm has always been a tad bigger because I'm right handed. We are flying tomorrow back to the US. I'm gonna ask a referral from my doctor to see a lymphedema therapist. We flew from Greece to Germany then Switzerland this morning and I felt that achiness on my left arm again not as bad as the last time but it's definitely there. I'll keep you posted if I survive the flight tomorrow.0 -
Manual lymphatic drainage
You need to go to a certified LE thetapist to show and help you learn what is best for you.0 -
I want to share some good news with you. After complaining about Arimidex (AL to be precise) which I had been taking for a year, my onc just decided I am finished with all CA meds. Isn't that great?
Even my LE hand is behaving as long as I don't overtax it. Now all that's left is getting rid of unwanted pounds...(but that's nothing new)
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dassi, congrats and hope all works out for you! I am looking forward to ending my aromasin in Dec and have threatened to end early but...hanging in for now
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I started a separate thread asking about what to do as I only had 1 day notice prior to a 5 hour flight. You all made great suggestions and my pt sent me to a fitter who she trusted to get me an off the rack sleeve and gauntlet. The flight went well and no swelling afterward. The weather here, NJ, is very, very humid compared to northern CA. Yesterday, I thought I saw some slight swelling at the wrist and the underside of my upper arm was achy. Lots of water, MLD and have been wearing the sleeve. The sleeve is comfortable and controls the achiness and minor swell. I will be flying home tomorrow and then coming back in a week as my mom is still critically ill and I don't want my dad to be alone. Thanks again for advice and support.
Caryn0 -
So much good information here. Need to read whole thread when I have the time. Thank you all for your wisdom.
I'm having a sleeve problem. Long story that i'll not get into now but which one do you all prefer:
1) Juzo soft sleeve
2) Or the lymphediva sleeves. I'd really like either a white, black or red one. It is true that the black tends to be tighter than the other colors?
I know you're all different but would like your opinions on the respective sleeves. Money is tight and I cannot afford both right now. It's one or the other. I normally wear a normal Juzo sleeve and have never tried the juzo soft nor a Lymphediva sleeve. I'm looking forward to something other than medical beige.0 -
exbrn, it's good to hear that you were able to get through the flight there with minimal discomfort. And smart of you to think to be proactive. I'm sorry your Mom is so ill. I hope the journey home doesn't cause any new symptoms. Will you be able to see your therapist before you head out again?
Dawne, I've only used Juzo so I can't compare to Lymphediva.
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