ALL THINGS Gloves and sleeves
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Hi. It's been a busy couple days.
I'm finally going to get a chest compression garment (Lymed long bra-type thingy, that's what the hospital wants to try first), so hopefully if that decreases the scar area edema, the pain there will lessen. The hospital FT also measured both my arms, was not impressed that my affected right arm was only fractionally larger than the earlier measurement --- but I told her I had been wrapping for three days! (She's only "heard of" wrapping...)
My private LE therapist will be attneding an LE conference soon, said all the company reps for Caresia and similar products will be there, and she wants to check them all out with me in mind. She agreed with you women that somehing easier to apply than Superlon foam rolls etcwould probably make my life easier.
Some women here have PM'd me with links to self-massage technique vidoes on YouTube, and I've started to do them regularly, because it feels good. My LE therapist was sceptical, afraid I'd do it wrong --- but while she was massaging me, I paid attention to the surprisingly light pressure she uses, and now don't think self-massage will hurt.
She taught me a "lighter" wrap using Ideal stretchier outer bandages and foam layer only on my hand, but I only wore it for about three hours then removed it because it felt bad up my arm.
Then I was "naughty" -- or practical -- didn't wrap at all for evening or night, so much to do before chemo tomorrow --- and my affectd arm and hand fell off the pillows last night, so of course my hand especially is a bit worse this morning (Weds) but luckily still usable. Just finished a self-massage, am going to wolf down breakfast and wrap
The hospital gave me the next larger Lymed fingered glove size to put on during chemo but remove if it starts to feel too tight. Fit fine yesterday, a bit too tight in fingers this morning --- but I am finally learning that this LE is a "living thing", not static like a broken bone. Everybody is saying chemo itself makes it worse; LE therapist wants me not to stress, would be ok even if I did only elevation infusion/steroids day and the next week or so while my brain is fried, that chemo/steroid fluid is different and temporary, most people only start treatment after all chemo is through.
Anyway, thanks to all the support and info from you wonderful women, and my LE therapist, I no longer feel panicky. LE will need constant work to control, but I'm not going to let it be the end of my world. (so she says before the dexamethasone blows her up --- but hey one is allowed to think positive for once
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don't forget you can use a product called "Body Glide" it is an anti friction deodorant like looking stick that runners use to prevent chafing. I use this product daily for inner elbow chafing from my custom garment.Can use for your finger webs if glove is rubbing. But never wear a glove that is singing tight.
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tessu: you got it. LE is a living, changing thing and you have to roll with it. You are doing great,,, getting lots of knowledge so that you can change things up as you need to. Wrap, sleeve, glove,, whatever works that day. and MLD too! You go, girl!!
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tessu I was diagnosed with LE after my 4th chemo. Subtle but I caught it. I wear my sleeve daily and have had only 1 swell episode in almost 5 years. My own fault. Carried a grocery bag with that arm that was too heavy (hot humid day too). Not bad but it took a couple of days to get it back down.
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Thanks for all the support. I'm afraid of wrapping tonight because I'll gain water from the high dose dexamethasone, and don't want to wake up with my arm circulation cut off. I'll only put on my looser glove during infusion if it doesn't feel too tight. I'll try to go with elevation, and remember to not wrap agaon until my brain fog has sufficiently cleared. I'm hoping that I'll get lucky: that my LE will continue to respond well to wrapping, that current painful flares are due to the ongoing chemotherapy, and that the LE will settle a little in January when the infusion chemo is over. (Pretty childish, but I'm trying so hard to amintain a positive oitlook
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Tessa,I see your on Taxotere. It gave me incredible painful nuerophaty in my toes and fingers. If this is a problem ask for Gabapentin drug. It worked like a charm for me. I am sure they also have another drug similar where you live if they don't have the drug I named.
I couldn't even touch the fly on my jeans because my finger tips were so damaged. It was fine and all feelings returned after 6 months and I was on Gabapentin only for a few weeks.
Chin up. Knowledge is power and we are in your back pocket.
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hugz4u THANK YOU for mentioning that your neuropathy resolved after awhile! From all I've read, I thought it was going to be permanent! Yes there is gabapentine here, but if I can avoid it, I'd like to. But was that what helped? Or did you use gabapentinefor the pains until they stopped?
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Wow, did my hand and arm blow up with no wrapping or other compression during dexamethasone and chemo! Did exercises and self-massage last night when I got home, and plan that again today. As soon as the 3kg (!) of water I put on with the steroids starts to drop, I am going to risk a careful no-tension wrap during the days ----- if my brain is not too foggy. Sincerely hoping it's true that this hugeness will NOT be my new baseline, just chemo-induced (fingers crossed!)
Wishing everybody here a fun weekend
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Tessu, drink water, elevate,deep breath,rest, Yah that deximethsome
Is so swelling. I didn't have a LE problem while on it because my bmx surgery was after all the treatments. I remember how my face looked moonlike from retention though
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Believe it or not the deximethsone actually helped NOT retain fluid although I do think my face filled out… but it looked good on my since I have an oval face and it puffed out a few wrinkles
Once I got off the deximethsone I would put on 4+ lbs after every treatment. I think that's what pushed me into LE
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wow we are all so different. Dexi made me cranky. My friend is on it and he hides for three days otherwise his family can't cope with his anger. Otherwise he is a very loving person.hes been on it for five years once a month.
yes weight is definately a tipping factor.my truncal has acted up in the last year and i think it's the extra weight.lost 2 lbs and working hard at it to lose more so maybe things might settle down in the trunk. Having all the estrogen medicated out of my body makes losingweight hard to do
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I loved the dexi. Loved the energy but still had no problem sleeping. I'm always marching in the strangest direction… but then again I am an Aquarious.
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Has anyone here used compression pumps or Flexi-touch compression products?
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I've had my FlexiTouch for 5 yrs and it is great. I use it daily (well occasionally 'something' may come up and I miss a day). It does a much better job than I do as it takes an hour to run the full cycle but there is no way I would sit and do MLD for an hour if I were doing it mannually.
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Chemo brain + mega pain meds + nausea = worst post- chemo night yet
Head finally cleared enough to do decongestiveself massage then Vodder wrap safely at 4:30AM; took over an hour, but calmed the upper arm pain enough I was able to sleep for a few hours. Worried the arm and hand will "never" reduce to normal, but at least they don't hurt right now.
What are these pumps people are mentioning?
Will be glad when this chemo is over...
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if your getting major nausea ask for your nausea drugs to be admistered slower. That helped me
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I hope treating my LE flares from chemo backwards doesn't do any harm. I guess one is supposed to wrap nights and use sleeve and glove during the day. Well as I wrote above, my hand and arm were hurting so bad, I wrapped early morning, and just unwrapped 8PM to shower. The wrapping helped the pain so very much --- I didn't have to take pain meds all day! The dexamethasone water weight is almost gone; hopefully my hand won't blow up overnight with nothing on it? Still not sure about "rebound" swelling.....If pain comes back enough to wake me at night, I'll wrap then; too tired now --- but could, if I should...
I'll check here again in awhile before sleeping --- if it would be better to wrap again tonight, please say so. Otherwise good night and sweet dreams
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wrapping is the gold standard. Nothing is as good as wrapping. Go ahead if it makes you comfy plus sleeping in a glove and sleeve is a no no because it could twist and cause a tournquit effect.
Wrap whenever. In fact I am sick today and mostly resting so I think this would be a good wrap day for me even though I don't need it today.
I sometimes do a wrap day so I don't forget the art of it. Yes I do lay down with day glove and sleeve on but I am not a sleeper but an insomniac (even staying up for my over 48 hours of child labour!) and rarely would fall asleep with day compression on. Plus If I think I might fall asleep I rest on my back on my couch so I keep real still in my day glove and sleeve and don't turn over to side resting.
Hope you get over this soon! le stinks for sure and chemo sucks. There is a no Inbetween on this one😀
I don't have experience with pumps but you wear a garment on your LE and it pumps out the fluid by gently squeezing your LE affected areas. Usually this for a hour a day but MLD first to clear the nodes.the pump is a few thousand dollars, not everyone needs it. I will get one if its the last resort.some insurance company's will pay for it, most not
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Thanks very much, hugz4u. Sweet dreams
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tessu, I received my Solaris Ready Wrap, a substitute for wrapping, and I love it. If you can find the Solaris distribution rep in Finland, it's worth investigating, and I also suspect that there are European garment makers who also make wrap-substitute garments. So much simpler than wrapping! And it's done wonders for me, as I'm wearing it while doing my shoulder therapy exercises, and I'm no longer getting post-exercise full-arm, full-hand swelling. What a relief!
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Day garments (sleeve and glovegauntlet) and night garmentss/sleeves are designed differently and work on different principles. Day garments are for active time - while actively moving around - while night garments are for passive time - while sleeping or little or no movement. So day garments are not for night wear. Wrapping can be used for either or both times.
My day garments are custom Juzo as TSO (Off The Shelf) do not fit me at all and cause major issues with my hand in particular. My night garment is a Solaris Tribute.
I have had my Flexi-Touch for 5 yrs and use it daily. It is designed to simulate MLD (Mannial Lymphatic Drainage) that is done 'mechanically'. It is computerized and runs for an hour. There are 3 parts - lower body and upper leg, chest and shoulder and arm sections. The first 1/2 hr works in each of 5 areas for 6 mins each to clear the areas. The first section is the lower body and upper leg, then chest and shoulder, then upper arm, then elbow area and finally lower arm and hand. It then reverses for the last 1/2 hour continually going from hand up around and down to upper leg as a MLD massage does.
We are each very different and what works for one is not correct for all others so we have to learn what works for us individually. For me it's low level compression day garments, night garment and my Flexi-Touch. AND being very active.
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Carol57 - my LE therapist just told me about Solaris Ready Wrap and brought in a sample to show me! Thanks for posting about your experiences with it!
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Kicks do you need a prescription for Flexi-touch. Does insurance pay for it? How mych is it do you know
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I can't answer most of those question as I do not deal with insurances - my care is through VA and what I need with LE is ordered by my LET guy (who is an Occupational Therapist - not a PT) and I get 'it' when it comes in. I do know that Flexi-Touch are quite expensive (well in the thousands). There are other brands but according to my guy, they do not do as good of a job with MLD.
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Does anyone have experience with this combination? I continue to have so much trouble with wrapping, the cost might be worth it to me...
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tessu, I am quite pleased with the arm wrap. During the day I'm using it with a compression glove, to control swelling in my fingers. I want to use it at night, too, so I ordered the hand gauntlet and expect to receive it in another day or so. I'll let you know how it works after I've used the combo for night time.0
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That looks easy to put on. Is it easy, Carol?
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Carol, is there an easily washable liner? I sweat a lot. Washing the whole thick thing every couple of days would probably wear it out quickly...
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Does anyone using the Caresia sleeve also use their glove? Or do you wrap your hand (gauze, foam, short-stretch bandages) with it?
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It's extremely easy to put on. The liner is attached, an integral part of the wrap, so it has to be laundered often. But, you can use stockinette underneath to increase the time between washings. Handwash only, press between towels to reduce the liquid, and then air dry. So washing means doing without for a while. It is meant to be a sub for wrapping, so for day and/or night use. The gauntlet is a separate piece. I'm using it with a glove during the day, because my PT exercises for my shoulder ROM cause swelling to migrate to the hands, and a gauntlet during exercise doesn't do as much as the daytime glove to prevent that.0
