GRRRRRRRRR I HATE LE..........
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I don't typically have much issues with my arm, just some swelling above the elbow. On Thanksgiving my oldest son made us a couple of cocktails that were really good. I didn't drink a bunch, just two, but it was enough! The next morning I noticed my wrist was swollen, so I put on my sleeve and gauntlet to take down some Christmas decorations. When I went to take it off later, I noticed my hand was puffy too. I've worn my night sleeve every night since, and have been afraid to put on the sleeve and gauntlet again because I'm thinking I put it on wrong last time?
Does alcohol affect your lymphedema? I typically just drink wine in moderation. I'm thinking now about getting one of those light touch machines. Does anyone have one? How much are they?
My hand is still retaining fluid, so I'm thinking about going to a therapist.
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HomeMom - I've never heard of alcohol affecting LE. I generally have one gin & tonic a day in addition to one glass of wine with dinner. Or sometimes two of one or the other.
Sorry - don't know about the light touch machine.
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Interesting Jo. Sounds counter-intuitive that more fluid excreted wouldn't also pull more fluid from LE sites, but like so many things - worth more research. Thanks for posting.
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Homemom - I wish I knew more about alcohol/cancer/lymphedema. It seems like my lymphedema goes up/down, but never goes away. Staying hydrated, active (including stretching), eating healthy help alot. For about a year I did not have any alcohol and I do not think the LE changed much day to day. I have just recently started having wine again, and sometimes a beer and seems like I am just a little more swollen. But I also changed the type of device from just a sleeve to the Tactile sleeve and "core". The Tactile feels a lot more gentle so I'm wondering if the pressure is lower. Also rereading the pamphlet, it sounds like I may need to snug it tighter and wear something slinkier than a Tee and Sweatpants. (But it is cold). I am also exercising less, basically cut out the gym with covid. Definitley have put on a few pounds since summer, but damn it, cream tastes pretty good in the coffee.
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Thanks for the responses guys. I think I am going to go to the Eden spa here where they have lymphedema therapists. They can wrap my arm so it forces it down. Whenever it has gone into my wrist and hand, it has gone away after a couple days, but now it comes back even after I wear my night sleeve. My arm almost went down to normal when I lost weight. I drank about 80 ounces of water a day as part of the diet, but didn't exercise. Now I walk 4 miles a day (no sleeve) and don't drink that much water. It's hard to figure out a winning combination.
I don't normally drink much - weekends and then just some wine. It was the only thing I did differently on Thanksgiving.
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What is a tactile sleeve? I can't seem to find it. I have a quilted sleeve to wear at night, I'm not sure if that is what you're talking about?
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Hi, HomeMom,
Tactile is the name of a company that makes the Flexitouch lymphedema pump system, a kind of mechanical lymphatic drainage aid that can augment or take the place of at-home Manual Lymphatic Drainage. It doesn't replace other lymphedema treatment, though, such as the use of compression garments or layered bandaging, exercise, or careful skin care. Tactile makes pump systems for all kinds of lymphedema, not just arms and trunks. They work by donning thick garments attached to the pump, that inflate and deflate in the order and timing that you might use yourself when you're doing self-massage. The Tactile sleeve is the garment that's used for pumping the arm. It's not something you'd wear during the day or night, just the sleeve (and chest area) garment you use for the hour or so that a mechanical pumping session takes. It can be relaxing and it generally works well, as long as you don't give up on the other aspects if your lymphedema self-care. Some insurance covers this technique, and you can ask your lymphedema therapist if it might be workable for you. Here's the Tactile website:
https://www.tactilemedical.com
Hope that helps. Hugs,
Binney
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HomeMom - the tactile website has better pictures than I could take. https://www.tactilemedical.com/products/flexitouch...
The garments sent depend on what the healthcare provider says about your lymphedema. You could try calling them ahead of time for suggested garments, estimated cost etc. My garmet includes the chest and right arm, as well as "shorts". The pump is sequential and programmed for your specific needs, including pre-set pressure. The program has its own timer and shuts off when finished. It seems much more gentle than the previous device. I hope to contact a "trainer" in my area after the first of the year, because I find the shoulder area very hard to "fit" or at least it does not feel like it is really fitting. These are not cheap. I just got the insurance statement, and because I was at the catostrophic level for what I had already paid out of pocket when ordered., insurance picked up almost the entire cost. My cost estimate was $750, but the actual was about $350. I think they billed the insurance $7,000. I usually listen to the radio or watch a video while using, I found reading awkward. I usually use both the arm and shorts and recline. If I just use the arm I can sit up and read.
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Thanks ladies!
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Good evening!
I just logged on after a long while because whenever I'm feeling like I need answers..I always come here. This forum is a true life saver because I was beginning to think I was crazy with my LE. I just received my Tactile machine. It is working good so far. I also have questions about LE of my left breast and while my LE provider and my Masectomy garment specialist both agreed I have LE in my breast..I did not get the same confirmation from my Plastic Surgeon yet because he believes it is PMPS which I'm being treated for. I think it is separate issues.. I definitely have LE in my arm, back and under arm (sooo uncomfortable) which is why my machine was paid for. And so I also think it is in my breast too. the LE provider felt she didn't want to put me through the additional tests since she approve the machine. But sometimes the machine doesn't always help. That's why I cam to the forum.. I also just started about a week ago.
I also feel like alcohol aggravates LE...but thought I was crazy about that is well. In relationship to LE I wonder if anyone has experienced: weakness in the arm and shoulder and fullness? Loss of strength-- is it because od the sleeve or LE. or both? My left breat..always feels heavy. I have diep flap transfer so I even thought my tissue had gotten bigger but I think it's LE-- Has that happen to anyone? I do get temporarily relief from the machine and wearing a compression bra and sometimes my prosthesis because it makes everything super tight.. However that can't be normal right and who wants to wear that all the time. My right breast..barely even notices its there (completely chill compared to my left)
Thank you for reading in advance! Any tips, advice, always helps.
Crystal 💗
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I have a question about lymphedema. I had a lumpectomy andtwo sentinel nodes removed fifteen years ago. I recall a brief conversation with a doctor about lymphedema but basically it came down they were not that concerned about it with me for a variety of reasons. So I was never concerned and I have no issues, I have had numerous IVs, blood pressure and blood draws on that arm with no ill effects. I just started a weekly IV chemo (no port) and the nurse wanted to use the opposite arm (one that did not have surgery) due to lymphedema concerns. I was surprised as in fifteen years not one medical person has brought this up. I can’t say I feel very concerned as I’ve had no problems in fifteen years but has anyone out there developed lymphedema after that many years? Any advice for me, should I be concerned?
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Yes I know people who have developed LE at 25 years out. You are ALWAYS at risk. Most docs don't have any knowledge about LE. Hooray for the nurse who is pro-active. Take a look at the link below for more info.
https://www.stepup-speakout.org/
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Jo - sorry I don't, but I sure hope someone has info. Looks like a great product.
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cwins1218 - lymphedema really sucks. I just started using the tactile about a month ago for the right arm. Sometimes I use the "shorts" that came with it as well. I was using a different device that just had a sleeve for the arm. the Tactile is much more gentle, perhaps since it is sequential ? I wear compression glove and sleeve. I think stiffness in hands is from Arimidex. But clumsiness has shot through the roof, and I keep dropping things. Not sure if the typos are from too many breadcrumbs in the keyboard or my stiff hands and wearing glove. Your comment about alcohol. I wonder if it does make it worse. I went for 9 months or so without any, and recently started having a glass of wine or a beer. My lymphedema does seem to be getting worse or at least changing. Doing some tests to see if something else is going on. Asked my lymphatic therapist if the stiffening/hardening in neck adjacent to affected arm was cording, and she said No. I often read while using the pump, and have found a wrist support sleeve for the left hand very helpful since it is awkward to read.
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Jo what about trying to contact the step out speak up organization? Surely someone there could point you to a donation site. Or perhaps you could contact an area hospital that has a lymphadema specialist? I, too would hate to see that equipment go unused.
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Jo, the local chapter of the American Cancer Society may have some suggestions as well. One of their volunteers might even come pick up the machine from you.
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Jo, I donate equipment and LE gear I don't use to my therapist's office, and they always know of someone who can use it. Or in some cases they keep it to show patients what's available. Ask around at any qualified LE therapists' office and I'm sure you'll find eager takers. Then again, it can be hard to find a qualified therapist sometimes, yes?!
KatyK, kudos to the oncology nurse who warned you about using that at-risk arm! It's always heartening to hear about healthcare providers who are aware of lymphedema risk and willing to take the steps to prevent it. Though most lymphedema is diagnosed within the first couple of years after treatment, the risk is for life, and it's a rough surprise when it comes along later. Be well!
Hugs,
Binney0 -
Thank you for sharing...I'm sorry you are going through this. Do you ever see a LE therapist?0 -
If you see a lymphatic therapist they might be able to help donate the device. Mine said that they would be able to santize some models and get them to someone who needs them.
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JO - when my Dad died I found that Doctor's Without Boarders was one of the few places that would take used "medical equipment".
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This a post from lymphatic network, maybe already posted elsewhere. One woman's letter to AMA. I will also paste in case URL does not work. Need to keep pushing for better prevention, monitoring, diagnosis, and treatment. Need to keep sharing stories, https://lymphaticnetwork.org/news-events/a-letter-...
A letter to the American Medical Association (AMA) from Paula Tebeau
Dear Dr. Madara,
I recently joined the LE&RN community. It's been a great place for me for access education and advocacy for lymphatic diseases. I'm writing to you to share my personal story and experience with lymphedema with the sincere hope that it helps to bring about change.
In 2017, at the age of 41, I was diagnosed with stage 1 breast cancer for which my treatment was a partial mastectomy and radiation. What I didn't know then was the worst part of cancer treatment was going to be that it left me with lymphedema. Many months after my cancer treatments finished my breast was swollen and pitted. I remembered having seen a physical therapist shortly after surgery who gave me signs to look out for lymphedema in my arm, she was also our support group leader. I called her for advice and she said I had lymphedema in my breast and that I needed to contact my health care provider for diagnosis to get started on PT. It was quite shocking to me that I had it in the breast that was treated with cancer, I had no idea that was even possible and I was only ever worried about getting it in my arm. That visit snowballed and threw me into a life with lymphedema. I ended up with 3 breast infections in the early stages of my lymphedema diagnosis, I underwent several screening procedures, a biopsy, and many rounds of antibiotics during a time in which I was still trying to get over the shock of having had cancer.
I was lucky that I found a good physical therapist who was trained in lymphedema to help me get to a stable place after all the infections, but it remains something I struggle with daily. My PT gave me exercises and taught me how to do my own lymphatic drainage, I don't see a PT regularly now as I have limited health insurance for PT and I save it for when I really need it. I know how to manage it mostly myself and I know the issues I need to watch for and hope that I catch them in time. I wear a compression bra which is not covered by insurance and is terribly uncomfortable. I have pain on a regular basis, in my breast, and rib cage, but still lymphedema is not in my medical chart, my PCP does not know much about it and it's seen as a non-issue. Just the other day when I talked to my oncologist about the pain I have due to lymphedema he replied with just a "Yeah, that sucks."
I work in the field of human subjects research compliance and I'm disappointed in how little research there is about lymphedema, but even more so about lymphedema of the breast. I'm adding my voice now as I also believe it can help lead to new medical standards in the treatment of lymphatic diseases and shine a light on the need for research. Please make lymphedema, lipedema, and other lymphatic diseases a priority for the medical profession.
Sincerely,
Paula TebeauThis message was also on the site.
This is how change happens. I invite you to read Paula's powerful words, published on LE&RN's website, regarding her lymphedema treatment and her demands for change that she sent to AMA CEO & Executive Vice President, Dr. James Madara: james.madara@ama-assn.org.
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I posted under Covid and will also post here. I am scheduled for Covid shot 1 in mid February, and since I have mild LE in both arms, I do not take shots of any kind there,. I make them use my thigh for flu shots, and it is always a struggle. Most nurses have never done that. Has anyone here had the shot somewhere other than arm (assuming thigh?). Any advice. I get so tired of having to fight for safety. The staff at my dr’s office finally learned to do foot draws, then the ones who were good left! Aargh! Thanks for helping ease my mind, if you can, when I’m already concerned enough about Covid-19! CVS is coming to the retirement community where I live, so I don’t have much say about who does the shot
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Member YesIamaDragon posted on the Will You Get the COVID Vaccine thread that she was able to receive the injection in her gluteal muscles.
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Boobs - I had my first shot yesterday, in my thigh. It was at a local hospital, so an RN was called over to administer. I think you can forget places like CVS & WalMart for thigh shots.
Good for you that you doc will do foot draws. The only place I have found is the "transplant center" or the "blood donor center" - and both are a hassle to get it scheduled every 6 months.
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Thank you for the responses. CVS will not do a thigh shot in store, but I have always been able to persuade them in our community. A Walgreens NP told me she would do my follow-up shingles shot in the thigh, although it was not their usual practice. It all depends a lot on thee particular person, apparently. I do appreciate your help!
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I actually found a pharmacist in a Kroger store that has a little sliding door cubicle. He will do thigh shots there. Used to be hip/butt shots, but he researched and said there was less danger of hitting a nerve in the thigh. (but not Covid yet of course)
BTW - I wore a skirt with shorts underneath to have my shot. Idea courtesy of NM on BCO.
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Was the shot in the thigh very painful and sore later?
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I've been having shots in the thigh for awhile - flu, tetanus, etc. The Covid vaccine wasn't any problem. The needles are small & the dose is small. There was some minor swelling the next day and it's tender. Not sore - just tender.
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Good evening!
Has anyone experienced lymphedema pressure or fullness feeling underneath their arm pit exclusively? After the machine seems like it helps with my breast and arm..the area underneath my armpit is ignored and it really feels like all the fluid is there? It actually throbs a little? The only thing that sort of helps is my compression bra..but again it can't get the area around and underneath the arm pit. I am asking to see if anyone has experienced cause I'm wondering if I should go back to the LE..doctor or if I should just wait to see the PT/LE therapist cause this is something that is normal.
Thanks in advance for any advice...
Crystal
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Crystal - I have truncal & breast LE. Actually the area to the side of implant to under my arm is usually the only place I have swelling &/or pain. I think it's a combination of LE from the ALND surgery and the radiation damage. I'm more than 5 years out from active treatment. What helps me the most is massage. If you can get into your LE therapist, there were several new things coming down the pike when last saw mine a couple of years ago.
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