GRRRRRRRRR I HATE LE..........
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Jinx - do you have an LE/PT you can call to discuss this?
If not, I think Lymphadivas is a reputable company. Maybe you could call them.
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Jinx, I alternate between Juzo and Lymphedivas sleeves. An LE therapist did my initial measurements, so I order online based on those figures. Lymphedivas has an online measuring guide as well as customer support specialists to assist with proper measurements. As MinusTwo wrote, give them a call.
Lymphedivas sleeves are available in patterns as well as solid colors. For summertime wear, I much prefer the sleeves from Lymphedivas. On hot days, Juzo sleeves feel like heavy bandages to me.
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Jinx27 - it is important to get the right fit and compression. I do not known anything about brands. The lymphedema therapist sent the request to my oncologist for the order (maybe an insurance requirement ?). She also thought it was important to have the Prosthetics/Orthotics seller measure for a proper fit and recomendation (there are different kinds, off the shelf, and custom, something called knit). I wear Juzzo 30-40 compression sleeve, and Mediven 30-40 glove, She likes the Mediven glove better than Juzzo's because the finger extends to the second joint. Lisa, at the store, also had tricks/suggestions for getting the sleeve on, and reparing small tears/holes (use fingernail polish so it does not continue tearing.
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Hi all,
What is your experience with cellulitis?
I've had lymphedema for over a year & I have been extremely careful with my affected arm. When I woke up this morning, I knew something was wrong. It was hot, heavy, and had a swollen, red spot (looks like a bug bite). After I cussed a little, I got on Teladoc and had a prescription for antibiotics called in. The Teladoc told me to wear my compression sleeve & 'use my arm' like normal, but to not use my lymphedema pump for 48 hours. He said if it worsened, I needed to go to ER immediately for IV therapy.
Since I live by a lake and it is summertime, I know I am going to have to be very cautious. What do you all do to stay well?
Thanks!
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I had a very bad case last fall, and did end up hospitalized, have been seeing my LE therapist regularly since. The rule is DO NOT wear compression until completely headless it can spread the infection, I was told to rest as much as possible, and keep my infected arm elevated above my heart. I was in the hospital for a week, it blew up to critical within a couple of hours of being seen and starting antibiotics (1st dose was a shot in the bum) in the walk in clinic. I was on oral antibiotics for almost 2 months after coming out of the hospital, I had to take them the skin on my arm pretty much returned to normal, then for 48 hours after that. My arm is much larger ever since, and I had to get all new compression garments. Mine was actually caused by poorly fitting sleeve and glove, plus traveling to a much higher, much warmer elevation...then when there I over worked my arm even. Call you lymph therapist for their recommendations.
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I've had one mild case of cellulitis where I had a swollen, painful, red area with no fever. I needed just one round of oral antibiotics. For prevention I keep my skin moisturized and covered to avoid sun and bug bites. I use an antibiotic cream whenever I find any sort of skin breakage.
After recovering from cellulitis, the area was clearly fibrotic. Consistent use of a new Mobiderm sleeve softened the tissue. My LE therapist recommended it.
https://www.thuasne.com/en/mobiderm-autofit-sleeve
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Thanks for that link. This Mobiderm sleeve looks interesting.
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Their site doesn't show the nubby interior. It is bulky so I wear it at home. It's very comfortable for sleeping.
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Hello All
I hope this thread is still 'alive". I have one arm and truncal LE. REcently due to missing using my flext touch machine, my arm is too swollen for my regular garment, i've been using my night time garment. Our PT's are not yet open to take patients unless its an emergency and I think I'm an emergency. Better now before I get celullitis.
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Val - good to see you but sorry about the swelling. I think I've seen on the threads where a night garment shouldn't be worn during the day. But yes, I agree this counts as an emergency. Hope they'll work you in.
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Minustwo-I think I saw the same thing!
Val-can you at least get a phone consultation
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I was told by my LE therapist that a night garment can be worn during the day, but a day garment should not be worn at night. I was considered at risk during this covid thing, so my therapist was able to see me. I had severe cellulitis last fall, and my swelling was not under control. Call your therapist!
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As long as you aren't showing signs of cellulitis, you can get back to using your flexitouch too.
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LE in the summer - Great article from CURE reprinted courtesy of WearEase
https://www.curetoday.com/community/bonnie-annis/2...
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Thank you for the post minus2. Good reminders. Is anyone else experiencing problems with veins, blood draws, IVs? I chose not to use a port 4 years ago for 4 rounds of chemo, maybe that was a mistake. Initially no problems with veins. A year ago I developed lymphedema in the R arm. Bad luck for me, turned out to be a new cancer in the R-axilla. Since then I have sacrificed the left arm for veins., even though 4 nodes had been removed for 2 episodes of cancer. I'm thinking about getting opinions about trying the R-arm for vein work and giving the left a break. Both arms are compromised. Swelling goes up if I do not stay on top of things with self massage, garments, pumping.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. 4 rounds TC Aug-Oct 2016, no port,. Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Initially anastrozole, switch to Tamoxifen.
2019 ER+ R-axilla. PET indicated no metastasis. Started Ibrance and Arimidex. Tumor has shrunk from 2.5 cm to 7mm over 7 months. Next CT due July/Aug.
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Same here. I love the comments and can relate. My lymph node dissection [left arm only] was in 1997. Bilateral reconstruction occurred around 2014. I started having pain in my left humeral area about 2 years post reconstruction. The pain woke me up at night. Then the edema earlier this year bilaterally! Go figure ..... bilateral lower and upper lymphedema. I saw an OT but i am not if she is trained. I wear sleeves, exercises but it lasts for a couple of weeks, walking is very difficult, it stays away for 2 weekS and recurs. The pain!!
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Has anyone found a "user friendly" measuring tape to help with self-monitoring? I find perception unreliable. My left hand is just too clumsy to measure the right arm. I see some tapes measures on amazon geared towards body builders that let you snap the end into a lock. They are cheap, but maybe an answer. Probably won't see the therapist as often since she thinks I am am managing it well, even though it goes up and down. Any experience out there with laser therapy or surgical node transfer? Are they just temporary relief? I think there is more than one forum for lymphedema, so might post this on those as well.
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Hi ! Does anyone in this forum have or have had breast Lymphedema? I’m experiencing since Friday some Lymphedema symptoms: erethyma, heaviness, swelling and part of my breast is pitted. I’m hoping it is Lymphedema and not IBC. Tomorrow I will try to get an appointment as soon as possible with my breast surgeon. If anyone has experienced these symptoms and was diagnosed please let me know. Does it get better with treatment? Th
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Eigna, I have left breast lymphedema.... it has not been fun.. i noticed an indent and hardness mass, scared the ship out of me as I thought it was another lump, just on the other side of my breast. I got right in for MRI and ultrasound and they told me it was from Radiation... I wear a swell spot and cleavage swell spot with a compression wrap, it seems to help temporarily, but if I don't do it every night, I swell back up. Left breast size F, right breast size D... I do the arm exercises as well... I went to a LE Specialist and she massaged my breast, chest, and arm to try and tech new lymph drainage, didn't help much, and my left lower breast is hard as a rock some days. I follow up with RADS the 28th.
I asked my surgeon and LE Therapist if I have DMX would it go away, both answered IDK.
I follow Dr. Perry Nickleston, Stop Chasing Pain, on FB, IG, FB, blogs and have learned more about lymph drainage from him and follow his excerises when I can, especially his Lymph MOJO.
https://www.stopchasingpain.com/about/
https://instagram.com/stopchasingpain?igshid=o7tvj...
https://www.facebook.com/StopChasingPain/
Good Luck!
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Eigna - there are 340 pages just on this ONE thread of women who have posted about their lymphadema. All you have to do is start reading. Many are still active on these boards and you can read their stories & trials.
No - it doesn't ever go away, but it can be manageable. Please be aware that the majority of docs aren't up to speed on LE, and may even pooh-pooh your questions & symptoms. You need to be evaluated & measured by a trained, certified lymphadema physical therapist. I would hesitate to self treat from You Tube w/o some hands on training - although after you've learned the proper techniques, like MLD, most of the treatment & compliance will be up to you. The link below may help you find someone who is trained and will certainly answer some of your questions.
https://www.stepup-speakout.org/
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Eigna - Since you're in Montreal, you can get a referral from your surgeon to your hospital's lymphedema clinic.
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Thank you all for your replies. I don’t feel alone in this journey with all of you right beside me. Well I was able to get in touch with my breast surgeon today via the breast nurse. I sent her a few pics of my breast to her and she sent them to my doctor. Doctor diagnosed me with breast cellulitis and prescribed me antibiotics for 10 days. I hope she is right. Time will tell. I should see some improvement in a couple of days. 🙏🤞.
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I've had cellulitis in my arm. The redness started to go away after a few days of the antibiotics, but the pain lasted longer. I recommend that you still ask for a referral to the lymphedema clinic. My LE therapist helped me manage the fibrotic tissue caused by the cellulitis.
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Thanks SerenityStat. I will ask about LE clinic. I know I have to be patient. It’s not even 24 hours that I’m taking the medication. Rash is a tiny bit better but feel some kind of itchiness under my armpit....sigh !
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Eigna - I couldn't possibly send a stronger recommendation to second Serenity. You should not be patient. You need to be seen NOW by a trained, certified LE therapist. Cellulitis is a dangerous adjunct of LE. It's best if they see you now with the rash & the swelling before the antibiotics clear it up - this time.
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I’m kinda concerned that they misdiagnosed me and I have IBC instead. Small Part of my breast is pitted I told the nurse but she said it might be from the swelling.
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Eigna - don't go there first. IBC is rare and lymphadema is not. If you hear hoof beats - think horses not zebras.
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Thanks minus two! Yes horses not zebras. Now I have shoulder pain which I think it’s unrelated to my cellulitis. I don’t know what I did at work to deserve this pain.
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The LE therapists I see are all kinesiologists. I don't know if that's the case at your hospital, but I'm sure they can help with the shoulder pain.
Try to get the referral soon because it may take time until there's an opening. Before the pandemic I was going every few months, but now they're only taking serious cases.
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I posted this on the LVA surgery thread as well. I am contemplating surgery, but it is not available where I live, and none of the specialists I see for cancer or lymphedema see to know much about it. I have been using an arm pump for a few months and it seems to help. Recently an arm/chest/abdomen pump was suggested as being more like a lymphedema massage. Does anyone have exerience with both/either. Thoughts? I was doing self massage prior to the pump, and should probably resume that. Self massage also helped. Is LVA surgery a better option? Looking for a tape measure that my very clumsy left hand could use to measure the right arm, having trouble finding one that I think I cold use.
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