GRRRRRRRRR I HATE LE..........
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OMG this is an awesome thread. I am thinking a lot about Mavericksmom's comment regarding all this intervention is way too much. I was humming along with mild lymphedema which was a tiny bit worse. Once I reached out for help, I was recommended for custom flat knit sleeves then things revved up once I started wearing them. I've had months of bandaging, including Coban, with next to no improvement. Also wear a night guard. Between physio and RMT and my deductibles, I have already spent over $2500 this year. With no change.
I keep thinking this is a freight train which will keep going forever. :-(
I am going to start those exercises - anyone else do the 'T' on the floor? I jog for exercise but don't do a lot of stretching. I just did it now and I had to be very careful but it feels really good now. Feels like what I need. Not 24/7 compression!
I also hate both wearing the gloves and people who continually ask me "What's wrong with your arm?". I feel like a freak.
Anyone else here from Canada?
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RuthATO - I'm not from Canada, but lymphedema sucks not matter where. I feel like I am wearing a petri dish on my hand, and get so tired of taking glove on/off in efforts to keep it clean, wash my hands or what ever. My arm has improved, but now I also have slight swelling in leg. Trying to track diet and activity more to see if there are any triggers why things are better/worse day to day. Being consistent with compression garments, pumping , and doing more elevation helps, but I refuse to sit on the couch all day long. Today I did a little swimming and water exercises, first time back in the pool for weeks. Feel a lot better, and will try to get more regular. Problem is, much more limited hours due to a lack of life guards. Out of pocket does get expensive. I do not know how your tax system works, but I keep receipts for everything, and am sometimes able to take a very small amount off of taxes for medical.
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I've only found relief in losing weight. I lost 35lbs about 4 years ago on an Optavia diet (google it) and the arm went very close to normal with just a smidge of swelling on my upper arm near the shoulder. I gained the weight back and it's worse! I went to a therapist for 4 months at $300/month and nothing. So I'm back on the diet to get to an even lower weight. I am 5'4" and a good weight for me is the upper 120's to lower 130's. I've lost 9lbs so far (154lbs currently)Fingers crossed it goes down again!
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Lymphedema is such a weird thing. I knew about it with my first cancer in '99 and was careful but it flared up when I got a second cancer in my upper chest near the collar bone. That surgery triggered it.
We can try to deduct medical expenses but they have to be very high relative to income to show any real benefit. Some of my expenses are covered by my health plan at work but $300 of physiotherapy doesn't go very far in my case. The government pays for 75% of the garments. Not sure what other people pay but for my custom knit sleeve and glove - they are $1100 (govt pay 75% of that).
At my last massage session, the therapist suggested that I might get some benefit from losing weight. I am 5' 5" and weigh 127 pounds. I might try that but I do a lot of jogging and I get low blood suars at times. I just wish there was something that helped. My arm is the same size or bigger than it was a year ago.
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Went to one of my favorite stores today to get some new clothes. Found a nice pair of pants and a top that had dolman sleeves, which in the past has been great to fit my larger arm into, however, this top's fabric wasn't stretchy enough. Although I've been losing some weight with the diet I'm on, the arm hasn't gone down like the last time I was on this diet. I still need to lose about 20lbs, so that might be it. I had to put the top back and get a blouse with wider arms.
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HomeMom - Maybe not an option. But when my R-arm swelled up, sleeves were a problem, especially when I was wearing the Tribute wrap (could not wear a regular compresssion sleeve). So I removed the seam from the right arm for some tops. Not being a seamstress, I bought cheap tops and ended up ripping open the sleeve. If you are careful, you might be able to just remove the stitching for the seam. Arm almost back to normal, can wear regular compression sleeve again and do not need to remove seams. A little worried because I seem to be retaining water.
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BlueGirlRed - Yeah, sounds like a good idea for certain tops. Now I woke up and my arm felt achy and brused in places, very uncomfortable. I took a dual action Advil and it went away, but my arm looks almost like I have a rash in places. Anyone have that?
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Hi everyone,
Any recommendations for a “comfy” night time sleeve? Really want Jobst Relax but my store doesn’t carry Jobst. Thank you.
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Sorry I don't know.
But have to share this amazing You Tube that the WearEase company sent out to their customers. Really a FANTASTIC video & recap from the LymphaticNetwork.org.
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Thank you minus two, great video!
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Thank you Minus Two that was a great deal of information. I wish they had that lymph suction thing they do on the lower extremities for the upper. I had read about the lymph node transfer surgery, but you could develop Lymphedema wherever you got the transfer node(s). It sounds like they do that in conjunction though.
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thanks for sharing the video, MinusTwo.
My lymphedema therapist is thinking I’m in need of adding a pump to my therapy. I’m only one year from surgery…. Feels less minor than it has…
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It has been a while since I popped in here. My LE comes and goes but so far has always gone, or at least been beaten back to a manageable point. But not lately. The last couple months have been horrid and nothing I do, none of the usual tricks seem to help. While my arm is slightly swelled, it's my boob, armpit, shoulder blade and side that are really giving me grief. By the end of the day my bra band on that side has dug a red, raw trench into my hide. I am so puffed up. The armpit and shoulder blade ache and my boob HURTS! It hurts all the time. I had pain like this for two years following surgery. My boob hurt all day long every day. Then it quit hurting! But now.... oh my word.... it's unrelenting and gets worse as the day goes by. I have not found the trick to getting this cleared up.
Out now to shovel snow, which either makes it better or worse and I never know which!0 -
that sucks, runor. Sorry it’s back.
I am glad to hear from you, though.
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Runor - so sorry for this horrible flare up. Hope you can find a certified LEPT to evaluate and help you get past this.
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Runor - have you tried the Wearease bra? Someone here on the site recommended them and they are wonderful. Its a compression bra that covers a good part of your upper trunk - just those areas you are mentioning. I wear mine when doing physical labor and sometimes at night as well.
I hear you on the pain and swelling those are the areas that are more problematic for me now than my arm and hand. Its around the shoulder blade, the foob itself, and that side from under the armpit to end of rib cage.
At the end of last year my increased measurements qualified me to apply for a flexitouch pump. It was expensive, even with my insurance picking up most of the cost but it has made such a difference in my daily pain level. This contraption has two pieces - one a girdle around my hips/thighs/tummy and the second the left arm/chest. Treatment is one hour a day. Do you have a lymphedema therapist that you see and could you possibly qualify for similar equipment?
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I'm the one who recommended Wear Ease. Link below to the Sydney Bra I wear one 24/7 and they are really comfortable. (fuchsia for day & white for night) It can be stepped into or pulled on overhead. Drys quickly, which is important in Houston. When I was going through LEPT at MD Anderson, they had not seen one, but loved the product since it come up under the arms & high on the back to provide truncal compression. And no thin, hard band to cut into your ribs. Their products are made in the USA by a woman owned company. They are very responsive if you call and no problem with returns as long as you try them on w/o perfumes or lotions. Every couple of months they have a promotion - like buy one/get one half price or free shipping. I don't have any stock in the company, but wish I did.
https://www.wearease.com/products/sydney-bra?varia...
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Thank you MinusTwo for the video.
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Wear - Ease, never heard of that. Will have to investigate, Thanks. Pump units? God, I can't figure out how to use a flat iron on my hair, I can only imagine the catastrophe I'd have hooking myself up to a machine!
No LE specialist for me. I don't even know if there are any around here. I have muddled through, fairly well, on my own so far watching videos and just doing odd things to try and bring some relief. So far I've been pretty lucky. But not lately.0 -
Minus Two thank you for reminding me it was you! And sincerely thank you for finding and educating us about Wear Ease. I was looking on their site again yesterday and am very interested in the garment that has built in axillary pads because that is one area where I am needing support. I shared the information placket that came with my Sydney bra with my Lymphedema therapist and she has begun recommending it to clients.
Runor hope you can find an LE therapist - that massage is so helpful. If you are experiencing a pretty good flare up try also adding in some other areas for massage. I was surprised to discover that I was holding lymph in my abdomen - thought it was just menopause ha - and upper thighs. I have added dry brushing the legs, arms, and torso as part of my daily routine pre shower. Heck anymore I have so many maintenance things to do its a wonder I get supper on the table any given day.
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Minus Two - The Wear Ease garments look interesting and I'm considering. Thanks for the info.
Runor - See if one of your doctors will refer you for OT or PT, as they are usually the lymphedema specialists (LE Certified, etc). Most are PT's, but where I go it is the OT's. I am totally with you about the pump idea. It was suggested to me, but I found the idea and details totally overwhelming and could not imagine hooking myself up to some machine for an hour or whatever it is and just sitting there being "pumped". Also, I had read that pre Covid at least, someone comes to your house and helps you set it up and shows you how to wrap yourself up in it. I did not want anyone coming here either. My OT (and the pump saleswoman!) really pushed it, so I went ahead and signed the request to the insurance company. Turned out that my insurance denied the request that the OT put in anyway, saying that they saw no evidence that what we were already doing (massage, sleeve) wasn't working. This was one very rare time when I took the insurance company's side. Things weren't all that bad with the regular OT visits and the sleeve, and I thought the pump salesperson did a real "hard sell" and maybe even had the OT "snowballed" or something.
I've also found that it is real important to replace the sleeve reasonably often and to be sure and wear it all the time. My problems start if the sleeve gets stretched out and/or I forget to wear it regularly.
I too have watched some online videos for tips and help, but what I have found that helped the most seems to be the massage done by the OT, along with religiously wearing the sleeve, so again, I would suggest that you try to get a referral for that, because insurance covers it, it's relaxing, and not cumbersome or overwhelming like wrapping yourself up in a machine and having strangers come into your home to see where and how you would be using the machine.
Rah - I agree that the massage is helpful, but I don't think I could do it to the extent that you seem to be able to. I'm just too generally fatigued from all of this to even shower every day (I'm an every other day shower person), much less do all that pre shower prep you've described. There's lots of post shower stuff too, like lotioning and more. Just like you say, all of these maintenance things can take up so much time and energy, there isn't a lot of room left for just "normal living" anymore. I get really frustrated with both the time and cost of all these "extra's" that cancer has added to my life and just normal daily living.
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Interesting that I live in a City with one of the largest medical centers in the country. Still - as I've been switching from one major hospital/medical group to another, the certified, & trained LE coverage is slim.
I had a great LTPT at MD Anderson since my breast & truncal LE was identified by my RO. Unfortunately that RO and that LEPT have both been promoted. The Katy location still has trained LEPTs but isn't handy so I've been trying to find somewhere else. I never found anyone at Baylor - where I did all my chemo & my MO was. I think I've found two trained people with Methodist (where my BS & PS were) - but at an outlying hospital. I'm scheduled for a re-evaluation next month. In the heart of medical center, Methodist apparently only has a trained/certified LEPT for hospital inpatient service only. Since I'm naming names, om 2011 I did find a wonderful doctor at Memorial Herman Wound Care center the medical center. They disbanded team a couple of years ago, but I believe they have started up certified LE services again.
Three Tree, I certainly agree. >>> I get really frustrated with both the time and cost of all these "extra's" that cancer has added to my life and just normal daily living<<<
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I have been dealing with LE since 2010 and have used two different LE therapists. I live in a very rural area and surprisingly enough, my first LE therapist was in another rural area but she had tried to decide what she could bring to their small rural hospital that would bring others in to the area so she got certified in LE years before I went to see her. It was still several hours drive but worth every mile. She taught me self lymph drainage and got my first set of sleeves and gauntlets ordered. I only had to visit her for a brief amount of time and from then on, I could get measured for my new set of sleeves every 6 months by a PT 25 miles from my home that surprisingly enough worked some with her so I did not have to drive up for all of the measurements. She retired after seeing her for a couple of years and my next LE had moved from a big city to a smaller city of less than 30,000 that is an hour and a half from me. In my neck of the woods, that is pretty reasonable drive. It just shows that you really don't know until you look where a LE therapist might be.
During my years with my current LE therapist, I was able to keep my moderate LE fairly stable and still lift feed bags and hay and be pretty physical. She told me that her LE patients were pretty diverse as far as what worked for them. She had one that only wore her sleeve when she was doing a lot of landscaping work in the summer months. I did start wearing a Tribute night sleeve in addition to my custom sleeves and gauntlets that I think really helped for quite a few years until my cancer came back in my LE side in a lymph node and my collarbone in 2019. That plus the radiation that was delivered to the lymph node and collarbone really flared my LE up the worst it has ever been and I could not get it under control very well and I am thankful that I was able to get a Flexi-Touch pump right before last Thanksgiving. My insurance paid 100% of it and yes they sent a trained LE therapist who drove many hours to teach me on the device and was very helpful and friendly. I use it every day. You do use it for 60 minutes and I normally do it at the end of the day while sitting in my recliner watching TV. For those of us that need it, the pump is very helpful and gets to places that I could not get to with my own manual LE drainage massage and quite honestly, I still work full time and farm and ranch so I was pretty dang tired in the evening to do the LE drainage and using the pump does a better job and I can relax. It is actually not as complicated as some of you make it out to be.
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Cowgal - I have read where many on here find the pump very useful and effective. They too seem to just sit and watch TV while they do it. My TV never works and I dread having to call the techs to come fix things (I hate having strangers in my place). My apt is small and very cluttered. I moved into this one after all of the surgery and chemo (in the middle of radiation) and it is cluttered and messy as all get out. The surgery and radiation have caused super tight chest muscles and spasms, etc. that I can't get a handle on in spite of OT and PT, so I can't move boxes around, empty them, break them down, and set up a real living area. I watch very little TV and what I do watch I just stream on my laptop and view from my bed. No recliner and big screen for me - it's all just too overwhelming and no one to help me sort it all out. I paid some people to help me pack up and get ready for the move, and then the movers just piled all the boxes where a couch/recliner, etc. would go (I got rid of my old couch when I moved and haven't replaced it - largely because of no room). My living room is essentially a storage area now and I "live" in my kitchen and bedroom area. No one comes in but a couple of close friends who "understand" and then people the apt management send in, that I have to let in. I could pay people to help me sort through everything again, but I keep hoping I will get this post surgery and radiation stuff under control and just be able to go through and sort and manage stuff like before. Sadly, I'm coming to think it may just never happen. I just hate to have to pay people to do all of the routine things I used to do. Never before in my life did I move and find myself not able to sort through boxes and move furniture and boxes around! It's actually a scary and sad situation to find oneself in. I'm also looking at retirement and "old age", so don't want my money just going anywhere, if I can do things myself. I'm between a rock and a hard place with this. I don't know how long to keep trying to "get better" before throwing in the towel.
I would certainly be open to the pump idea if things got worse, like yours did, Cowgal. I can't say that that won't happen down the road. Wow, I can't believe how active you still are with the farming, etc. and all that driving you have done to get the resources you need. Kudos!
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Cowgal - thanks for sharing you experience with a pump. Good information.
ThreeTree - how long ago did you finish active treatment? Did you ever see the TaiChi Breather exercise that was posted here some time ago? It not, I think I can find then & re-post since they are very mild.
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Minus Two - Thanks for posting and offering to dig out the breathing exercise. I would take a look at it for sure if you find it. I just have the worst trouble with all these tight chest muscles and I'm finding the OT/PT stuff of very limited help. I finished active treatment around the end of 2019, so a little more than 2 years ago. I just do Letrozole now.
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ThreeTree - Darn - I can't get the link to paste or insert - either as a.pdf or a word file. I've tried both 'insert image' and 'insert link'. Can someone refresh my memory of how to paste a link?
I have another page of "light" exercises, but not in my computer. I'll try to dig that out.
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MinusTwo - Thanks so much for trying. I used the search feature on here and couldn't locate your old post. I thought if I could find that, it would do the trick, but no luck. Please don't go out of your way for this. If you are able to easily post it, I would absolutely appreciate it, but I also do not want you to go to any extra trouble. I am very technologically challenged or I would help in that regard. The only way I know to post a link is to right click on the address and then right click paste it into the forum box. I'm sure there are 10 more ways or something, but I sure don't know how to do it.
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THreeTree. Below is the link on the BCO thread - thanks to BInney - our guru.
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MinusTwo - I posted a thanks to you and Binney, but it showed up on the Tai Chi thread somehow, so I'm just letting you know here. Thank you!
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