Just got compression sleeve/glove -- UGH
I just received my compression sleeve and glove (two of each). The good news is insurance (Kaiser) paid for the whole thing.
The bad news is:
1) I'm not sure it fits right (I checked on Step Up Speak Out ...)
2) it's miserable to wear
3) I didn't know I had to hand wash the darn things every single day,
4) how the heck am I supposed to wash my hands with a compression glove on? or ... am I really supposed to take it off and put it back on umpteen times a day to wash my hands?
I guess I'll call the PT at Kaiser and go in either with the thing on or put it on while there so she can check it to see if she thinks it fits well. Are they supposed to leave dents and lines? I thought that's what we were supposed to try to avoid.
I have mild lymphedema supposedly, so I'm starting to wonder if I can just skip the whole thing.
Also, I couldn't find info on the SUSO website about when you use compression garments and when you use bandages. I'm beginning to think wrapping my arm has got to be easier than the compression sleeve.
One last thing: the fitter (who I was sent to by the Kaiser PT) told me "lymphedema isn't supposed to cause pain." Really?!? That's the main reason I wanted to get the sleeve/glove. I thought it might alleviate the pain I get. But if it's just going to cause a different kind of pain ....
Comments
-
Etherize,
LE causes pain, the fitter is mistaken.
Compression garments are for daytime use--some people need them all the time, and some just when their LE is acting up or they're very active or flying.
Bandaging is for nighttime.
Compression can be uncomfortable, but it shouldn't hurt. The uncomfortable is just the feeling of being tight. The lines at the wrist are very common, and some people put the cuff of the sleeve over the glove.
Most people have to wear the compression for just a few hours at a time initially.
And, especially if it doesn't feel right, have the fit checked by your PT.
Personally, I wash mine in the washer on delicate. And the hand washing thing is an issue, especially depending on what kind of work you do.
Compression should fit well, keep your arm/hand down and not hurt or trap fluid.
It does sound like a royal pain.
Kira
-
It sounds to me like you have a sleeve that doesn't fit properly. If it's the right fit, then you shouldn't really even feel it when you are wearing it and it shouldn't leave any lines or marks. I have never washed it by hand every single day. The instructions say that they are machine washable too. Yeah, the handwashing thing is a pain. It is also my understanding that if the sleeve does not fit properly, then it can actually cause damage. Try another fitter and if necessary get one custom made. It should still be 100% covered.
-
I have washed my sleeves/gauntlets in my machine, delicate cycle, in a small lingerie bag. I've also tossed them in with the regular cycle in a lingerie bag, but I'm less comfortable with that, since it is such a more active cycle. They can be put in the dryer. My LE therapist suggests putting them in the dryer for about 5-10 min (using a timer) and letting them finish up air drying. Her reasoning is the dryer helps to re-establish the fit, but the air drying makes them last longer. I have no idea if that's true or not.
-
Etherize, my sleeve makes my arm feel better. If I don't wear it, I have an achy heavy feeling in the tricep area. It does leave ridges in the wrist area because that is where my edema is along with my thumb. I had no swelling in my thumb initially until the the first ding bat therapist I saw, put me in a high compression sleeve without a glove or gauntlet knowing I had visible pitting edema in my wrist. Where did she think the fluid was going to go. Within the first three days of wearing the sleeve, my thumb, fingers and entire hand ballooned up like the Goodyear blimp. With the help of Kira, Binney and the lady that owns lymphedemasleeveco.com, I got the right sleeve, right therapist, and a custom glove. The glove got the edema out of my hand and fingers, but not my thumb. At least what LE I do have, it is under control and I know my limits. I know exactly how long I can go without my glove without fluid going into the back of my hand. The glove does make my thumb numb if I am sitting still and not moving my fingers or hand and it does make an indention in my skin along the seam line of the glove. I do put if on and take if off frequently at home and at work. Yes, it is a pain in the rear but as long as it keeps the edema down, I am a happy camper. I remember when I was where you are, so frustrated, but it does get better and you will get adjusted and figure it out. It took me from November 2010 to April 2011 to figure this LE stuff out. Hopefully it won't take you as long as it did me. It's a wonder, I ended up with as little swelling as I do have, considering how long I wore the high compression sleeve and no glove or gauntlet. I could just strangle that first therapist I went to. So thankful for Kira and Binney!! I put my sleeves and gloves in washer in lingerie bag and then on to dryer for about 15 min to partially dry and air dry rest of the way. Hope this helps.
-
Etherize, I wanted to clarify what I wrote:
Bandages are to reduce swelling and can be for day and nightime use.
Daytime compression should not hurt--but LE does cause pain, and unfortunately that myth of painless LE just persists amongst the uninformed.
Poorly fitting compression can cause harm--so as the more astute women who posted above wrote, if it hurts, or causes pain--check the fit and avoid it.
I agree, when I wear my glove, my hand and wrist feel better. But it took awhile to get the gloves that worked--I wear custom. I don't wear sleeves often, but I did find the ones that fit.
The first compression I got, the inexperienced fitter put me in too high of a compression glove--caused cold purple fingers. Took me a while and new fitters to get it all worked out.
This great fitter came to my house, and said, in her experience, people will bring in a bag full of garments that haven't worked. I spread the stuff I had across the table with her.
So, try the compression for a short while, note if it hurts, causes chafing, holds fluid and as soon as you can, have the LE PT check the fit.
I've been known to run the gloves through the dryer on low as well.
Binney had a thread about "how does compression feel to you" and most women said they didn't like tight fitting clothes. That's what I was trying to say.
Last night, I was at a holiday party and put on the glove for the drive home, and it felt good. I needed the compression. I rarely wear it at work, as I need to wash my hands constantly, but have worn the glove when doing paperwork if needed.
for the fitter:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Pain: Lymphedema is often quite painful and that pain should be validated and managed. The pain is multi-factorial: neuropathic, mechanical, and/or inflammatory. The National Lymphedema Network issued a statement confirming that the condition can be painful, http://www.lymphnet.org/pdfDocs/NLN_Washington_Post_Reply.pdf
Kira
-
Thank you everybody for the great responses!
I did assure the fitter that LE hurts.
When I pointed out that my fingers were cold and a little bluish with the glove on, she said it would get better, and showed me how the glove fingers were loose at the ends. But obviously, the loose ends weren't enough, because even after wearing the glove for an hour, my fingers were still cold and slightly blue.
When I got home, I got on SUSO and looked at the photos of ill-fitting garments (so helpful!), and sure enough, in addition to the poorly-fitting glove, the sleeve didn't come up all the way, leaving my arm bulging at the top. When I pulled it off, I had lots of dents from the little plastic dots inside the sleeve, plus the lines around my arm at the elbow (where the swelling is greatest) and wrist.
kira, thanks for the clarification on the bandages/compression, and also about washing your hands. My PT said I should wear the sleeve/glove all day, but there's no way I can keep pulling off the glove and putting it back on to wash my hands 15 times a day ...
As for how compression feels, I was expecting it to feel tight and a little uncomfortable but not like it was cutting off my circulation.
nurseronda, you must have been terrified and furious to see your hand swell up like that! I'm glad your LE is under control now.
It's good to know I don't have to slavishly follow the daily handwashing instructions! I've got so much else to deal with (as you all do), it makes me tired just to think about that!
-
I go to a lymphedema clinic at the cancer centre. The nurses there are great and they do the prescription. I found a great place that does the fitting and even though it's a bit of a drive, I will stay with them because I trust them. The first one I went to gave me a garment that caused my hand to blow up - that's not good. So keep searching till you find a good one.
-
LE does cause pain. That is how I began to realize that I had LE was the pain in my arm & pain. Somtims an electrical pain & some constant pain particularly my biceb. I also learned to do the manual lymph drainage which helped a lot until I got cellulitis. Now I've had 2 surgeries to do with reconstruction. My arm is better but I don't think they protect your LE arms well enough at the hospital where I had my surgeries. I had to guard them like a hawk.
Your sleeves might be a little uncomfortable when you first get them but they shouldn't cause pain. I would go back to the fitter & if you aren't happy demand a refund. Then find another fitter. Fitter's are not all equal. NJ
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team