GRRRRRRRRR I HATE LE..........
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Serenity - thank you for the link.
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I have been battling LE for at least 5 years. I'm back at the LE therapist and getting my arm wrapped. I finally got the tactile machine which I love, but I feel like I hit a wall. At first my arm was 35% larger than my right arm and now it's been at 17% for over 6 weeks. I still can't wear my wedding rings and typing this is tough with a wrapped arm! The only times I have had no issues is the very beginning and when I lost 35lbs in 2017. Taking arimidex makes it tough to lose weight, but I don't want to go back on the diet I used (eating their food). December it'll be 7 years of arimidex and I can go off of it. Maybe then I can lose the weight
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HomeMom, I found my LE really flared during radiation. Before that I had no problems but radiation seriously angered everything and that was the first time I had to wrap my arm. I remember that weird sensation of creeping swelling. Awful! Then I bought one of those arm girdles that you have to be a contortionist to get on your arm. And then as you say, try getting through your day with Barbie Doll arm, won't bend.
I watched the videos, did the exercises, did the massage. They helped a bit. But it was an exercise I did purely by accident, for my lower back, that made the biggest difference.
I was laying on my back on the floor, arms out at sides like the letter T. I pulled my knees up with my feet still at the floor and let both knees drop over to one side, to twist my hips and stretch out my lower back. Holy Hannah! I yelped in pain! I felt this ripping sensation across my chest and into my armpit. I actually hollered and gasped and tears welled up, it hurt so bad! I was sure I'd be going off to the hospital because I tore something for sure. It took a day or two for the pain to quit, but my swelling went down! I could not believe it. Over the next weeks I repeated (carefully!) this stretch and my LE just kept getting better. None of the vids I had seen suggested this exercise. I think there was scar tissue and stuff all bunged up and that stretch just tore something loose and got things flowing again. That's my theory anyway.
I still get a swelled boob and armpit and shoulder blade and sometimes down to my waist. But it is much better than it was. I just have to keep up those stretches and when I don't, I pay for it.
I see your surgery was in 2014, so you might have some long standing scaring going on. If you try this exercise do it very, very carefully. Slowly. On your back, arms out at sides, pull your knees up and then let them drop over to one side. (if you had surgery on left, you will feel the 'pull' when your knees drop to the right) If you are tight you will feel that pull across your chest and into your armpit! I do this now with my arms flat on the floor but straight above my head, like a bank robbery. Stick em up. Even more stretch. It hurts. But it has helped me more than anything. Good luck with this miserable affliction.
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nunor I have felt that ripped pain you describe when I have moved in a certain way and have avoided it! That stretch you do was instructed to me to do when I had a back issue long before bc. I'll give it a shot, thanks!
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Yes! That's the stretch. And that pain is real and no joke. So go slow and be careful. If you are all bound up in there this is going to hurt and will take lots of time to improve. If that is indeed part of your problem. It sure was mine!
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HomeMom – when my LE blew up and got too big for a regular compression sleeve, I got a tribute sleeve night sleeve and glove. I wear the sleeve which most of the day and night. It is chipfoam with Velcro straps. At night I use the Tribute glove (looks like an oven mit) .My arm looks quite mangled when I take it off, but I the LE is getting better. I also use a piece of Medi foam in a regular compression glove during the day which seems to be keeping my hand under control. The Tribute sleeve is easy for me to take on/off, unlike wrapping. I got mine from an official dealer who measured my arm.
Runor – thank you for the stretch tip. Up to mid-Dec I was doing a variety of stretches, but not that one. In Dec LE really blew up and really limited range-of motion, doing very little stretching now, because it is just so uncomfortable, especially at home without the mats at the gym. But I will give it a try. Got a pully exerciser that LE therapist suggested, and pull LE arm with the opposite arm just a little further than it can do on its own.
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Be careful...I suggest PFIZER
JMO0 -
I have had lymphedema for 18 years due to removal of 24 lymph nodes after lumpectomy in 2003. I can't even remember how many therapists I saw, how many times I was wrapped, how many custom sleeves I wore, but for the last 11 years or so, I did nothing. No wraps, no sleeves, just normal hygiene, no vaccines, blood draws, or BP on that arm, and I am fine. Due to the fact that it is about twice the size of my other arm and I am self conscience about it, I cover it up in long sleeves, even in the summer. I have never had an infection in it, it never got worse since ending the wraps and I forget I have it most of the time. I don't baby it or pamper myself. I carry, push, pull things and nothing bad ever happened. Of course I am not stupid, and since I have both shoulders replaced, I am not going to do something that would hurt me, like moving or lifting something extremely heavy, but I don't limit normal activity.
I even had a complete shoulder replacement on that arm and it didn't get worse because they wrapped it for surgery. I used to obsess about it, but no more. When I had a recurrence of cancer and a mastectomy in 2019, it didn't get worse, and I didn't need any more nodes removed since that whole fat pad was removed in 2003.
I totally believe in being proactive and trying to prevent lymphedema, but believe in minimal care once it forms. I look back at all the time and pain I went through because of it and it never mattered in the end. Maybe someday they will come up with a cure. I know that most surgeons don't remove many nodes these days and that is a good thing. Prevention is best! I don't think most doctors care about lymphedema, their attitude is that it isn't their problem, they just refer to therapists. Therapy only goes so far. If you can keep the size close to normal using sleeves etc, great, do it! Just know that it is possible to live garment free and not have issues, if after years. you get fed up with it.
BTW, Medicare won't pay for garments so once on that, it is another out of pocket expense. There are worse things in life.
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Has anyone seen a non-custom sleeve larger than a size VI?
Even before lymphedema, I had freakishly large upper arms. My affected arm is now so large that even a size VI, the biggest I could find online, is so tight that I can't tolerate it for more than hour or two. I now have Medicare (sleeves aren't covered, right?) & private insurance so will have a $500 deductible plus 15% of the garment cost if I have to go the custom route.
I've been frustrated with buying from an area boutique catering to cancer patients because the sleeves felt too tight. I understand they need to compress the tissue, but they were so hard to don & wear that I wouldn't be compliant. I lost over100 pounds before my cancer diagnosis (although COVID has gifted me with 10#) so lots of loose skin plus I've had severe Fibromyalgia for decades so I know that I'm especially sensitive to pain. Blood pressure cuffs were excruciating until I learned that the cuff could be placed on the forearm
The fitter tried to comply when I begged for sleeves larger than a normal person with the same measurement, but it seems I was always chasing the progression. Sleeve too tight so I couldn't tolerate it more than brief periods, arm gets bigger, new sleeve six months later still hurts, arm gets still bigger, lather, rinse, repeat. I think the custom sleeves were over $500, but I'd already paid my maximum $5,000 out-of-pocket each of the two years so don't recall the exact cost. The last year has been financially brutal so finding a non-custom option would be amazing.
Thanks!
Lyn
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VLH, this might sound totally stupid because I"m typing as thoughts are coming into my head. What about a compression stocking? I have never seen one. I do not know how they compare to a sleeve. But surely people buy stockings for LE in legs. Could you buy a stocking that might work for your arm? If you can find a compression stocking ready made it might be cheaper than a custom sleeve? Now I have to google compression stocking to see how wildly off I am.
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VLH - My arm also blew up beyond a regular compression sleeve. I started wearing a Tribute "night" garment, almost 24/7, breaks for pumping an washing/showering, icky jobs. I usually wore it over the sleeves of clothing or found cheap shirts and ripped the seam. I actully put on a regular sleeve for the first time, yesterday. But today, that sleeve feels a little tighter, so maybe I need to go back to the tribute night garment.
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ABOUT THAT PROBLEM OF GETTING COVID VACCINE IN THE THIGH:
BlueGirlRedState and others having trouble finding someone to do an alternate site for your Covid vaccine, I just got mine done (FINALLY!!) by a local Hospice organization. They're non-profit and they're giving their own patients the vaccines, obviously, and they told me they have extra so are willing to help people like me who can't otherwise be vaccinated. They suggested I let you all know it's a possibility in your own areas as well.
The New York Times recently had an article about this being a problem for those of us dealing with LE (bravo for them!), so at least the word is starting to get out there. As usual, we may have to do some advocating for ourselves, but when we let people know what we're dealing with we help more than ourselves--we help each other!
Onward!
Binney0 -
Thanks for the input, Runor & BlueGirlRedState. I have short "T-rex" arms so not sure if a stocking would be an option, but something to investigate. 🤔 I'll check out the night garment as well.
Lyn
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T-rex arms, BA HA HA! That killed me.
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VLH and BlueGirl, I recently had an appointment with an actual physician who specializes in lymphedema and was told that the Tribute sleep sleeve is made for an entirely different purpose than the graduated compression sleeve. Where the graduated compression sleeve counteracts gravity by squeezing the lymph fluid up the arm and into the lymph system for distribution, the sleep sleeve is not made to be worn while you're moving around because it has a different purpose which is to prevent the formation of adipose (specialized fat) tissue under the skin and in the muscles of the affected limb. If you wake up with your arm looking like a waffle iron, then you know the sleeve is working. Without that sleeve doing its work, the lypmh fluid that built up in your limb will eventually harden and thicken the skin and underlying tissue. But the sleep sleeve is not providing any graduated compression, so the squeezing it does do may in fact be doing just what you don't want it to: keeping all that fluid just where it is in your arm.
Of course this is my lay person's paraphrasing of what the doctor said, but it makes sense to me, so I thought I'd share it with everyone to consider for themselves. Also, those sleep sleeves apparently have a life span of about two years, so I'm about due for my second one.
Hope everyone enjoys the holiday weekend!
Anne
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VHL and Piper - T-rex made me laugh. A cartoon I love, is a T-rex that has been given a selfie stick for a B-day. Now it could take selfies of it face rather than its chest. With reduced range of motion in affected arm, describes me well. I wore the night garment because my arm got too big for a regular sleeve. Yes, my arm looks like it has been in waffle iron when I wear the Tribute. I had lots of fibrotic tissue which seems to be going away, my arm is getting a lot softer as well as smaller. I have been able to wear a well worn regular sleeve, finally. My lymphatic therapist suggested it was very worn and to see if I could put one on that was not so worn instead. Another option ( it did not work for me) made by Juzo, is their "short stretch compression wrap". It has velcro to adjust snuggess. It just did not provide enough compression. Maybe adding "medi foam" would help?
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Not the cartoon I saw (no caption on this one), but close
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Rumor, I like the way you think outside the box! Sadly, my "lymphedized" arm is as big as my thighs were in my younger days and I wore the long arm sleeve so an idea to explore.
Piper/Anne, interesting input on the sleep sleeve. Thanks for sharing. One thing I need to do is start using my pump twice a day since there is a shorter daytime cycle available.
Blue Girl, I've seen that graphic as a meme and laughed out loud. Long sleeve shirts usually hang around my knuckles and I joke about being assembled from spare parts. Ms. Frankenstein? My Amazon Wish List includes a T-shirt that says "T-Rex No Like Pushups." They also have one with a T-rex with a grabber in each hand gleefully declaring, "Now I'm Indestructible!" or something similar. Tee Hee!
Lyn
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VLH - I usually avoid more t-shirts since I have a closet full of them. But I might have to make an exception for "T-Rex No Like Pushups." - too funny. Could use a "T-Rex No Like Pullups." as well.
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I'm trying to purge my cluttered house, BlueGirlRedState. However, I may reward myself with the T-rex shirt for donating 16 boxes of books last week. 😀
Lyn
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I wonder if reading books is hard for T-rex
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You guys are so funny. I can't bring myself to purge books. Doing well with everything else.
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oh God, I'm t-rex with my lymphadema left arm too! So funny, thanks for the laugh!!
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Well, I could not resist,even though I do not need anymore t-shirts. I just ordered the combo pushup/pullup/weight lift, (cranberry color) but was tempted by the unstoppable one as well . Would like one for bookgroup as well - how would you turn the pages?
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adding cording to my list of cancer caused complications.
at least it’s alliterative0 -
NotAsCalm - sorry about the cording. I hope you have a good LEPT who is addressing it.
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NotAsCalm - sorry about the cording Hope your therapist can release them. Sometimes they will "pop" free on their own. Had that happen one morning at the breakfast table. DH heard it as he was sitting next to me. Bizarre. Love your sense of humor about it - alliterative indeed.
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Notascalm - alliterative ailments alleviate angst. Cancer caused cording is controllable but crappy. I feel your funk over the flapping flab of frigging lymfffffedema!
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Dealing with lymphedema in the right arm for 2 years now, getting better but never gone and always seems to get worse if I do not consistently wear a sleeve on the arm and a petri dish on the hand. Now experiencing a very swollen left leg. See LE this week (she was out sick when I was supposed to see her). In emails, she thought based on my medical history that it was just edema, not related to the cancer. She has put in an order for a hight compression stocking. When I saw the PA for the MO last week, she did not seem concerned, but felt the nodes in the groin. Did not think an ultra sound was necessary since I am taking Eliquis, but said she would talk to the MO. Has anyone else experienced swelling that may or may not be related to the cancer or cancer drugs. Did it go away? I am trying to elevate for 1+ hr/day and while sleeping. Does anything else help?
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runor!
Exactly
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