Anyone Else Get a Rash From the Sleeve?

mimikitty, I sure agree with your onc that the rash is a problem, so don't wear the sleeve again until you get it sorted out. If you tell us what brand it is there may be women here who know the fiber content, and that might help you identify the source of the problem. Are you generally sensitive to certain fabrics/substances? Did you wash the sleeve before wearing? Lots of possibilities to sort through!

Be well,
Binney

It's probably been very warm in Texas - is your condition like a heat rash? Good thing it fades quickly.

When we had a hot spell last May, mine needed oral antibiotics to clear up. I also have the Juzo sleeve (my red spots went right up to the silicone band, then stopped abruptly). Even though it didn't itch, I applied a hydrocortisone cream which had no effect. I went to an urgent care center within a couple hours to get a prescription and later got an extra refill to keep on hand in case a similar situation occurs again.

With LE, the normal bacteria on the skin can cause an infection to develop easily, so be careful!

Mimikitty, one time a while ago I got itchy little red dots in exactly the same pattern as the little white dots that serve as a "grip" on the top of the sleeve. Cant remember if it was Juzo or Jobst though  - It took a day or two for the spots to disappear and the itch to settle, but I have a sensitive skin and get allergies. Im pretty sure it was warm temps when this happened.

Binney, sounds like we're in the same boat. I'm 99% sure it was my prophy side and I only wear Juzo's that side, but Ive changed to Jobst for the Cancer side. Not sure if Juzo do custom but Jobst do and I think thats why my PT changed me, plus its more of a solid sleeve.

All my sleeves have had that "grip" silicon stuff at the top. The alternatives, as far as Im aware are to 1/ get sleeves with no grip, which I'm sure would end up very quickly riding down your arm right? 2/  is have some sort of shoulder strap set up, which my PT is not keen for me to do and 3/ PT offered me some sort of gel a couple of months ago to try and I said "no thanks" LOL...with my allergies I could see where that was heading. 

Hi Kawee, sorry for your dramas.

My new ones I got are giving me a few issues too. Like you I too have an area that swells at the wrist area. Your  Shoulder and arm shouldnt ache, but having said that, for me, I have sometimes had to 'break my sleeves in'. Its a fine line without actually seeing it as to whether its a bad fit which should be rectified or just a breaking in issue. You shouldnt be swelling at the wrist more than when you dont wear the garment. Something wrong there if thats the case. 

Hopefully some others who know better than me will chime in with some advice. 

Oh mimikitty I am so sorry youre having to put up with an itch. Thats terrible. Rashes are THE PITS. I'm coming around to THAT time of the year (late spring early summer) where he rashes and allergies crank up. Urticaria and the like. Its a flippin nuisance. I would recommend that you get some sort of med to stop this itch ASAP because scratching is going to put you at a big risk if you break the skin. Cellulitis...and perish the thought of getting that.

Mimikitty, what a struggle! If the sleeve is causing you skin issues, for goodness sake don't wear it. There are things you can do when traveling by plane besides wearing a sleeve. Be really careful about hefting your luggage around--used wheeled bags and ask for help as needed. Stay VERY WELL hydrated both before and during travel. Exercise often on the plane. Arm over head, make a fist slowly and slowly open your fingers. Claw the air like a cat. Bend the elbows and bring your finger to your nose. Rotate your wrists both directions, and up and down. Everybody will think you're nuts, but you'll know you're not, and besides you'll never see them again.

In answer to your question about cellulitis, here's a page about it:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Have a great trip, and stay well! Let us know how it goes.

Kawee, I can't wear Lymphedivas either. If your wrist and the bottom of your hand swell you need a glove, not a gauntlet, or you may end up pushing swelling into your hand and fingers. It might also be really helpful to move to custom garments rather than off-the-shelf. Any chance you can look around for a therapist who will listen to you?

Gentle hugs all around,
Binney

Let me preface this by saying I'm new to le.  The more experienced ladies can correct any misinformation I have.

I totally understand the le being much harder to deal with than bc.  I'm currently seeing a counselor to help  me with the le.  After months of being depressed over it, I decided I really needed some help. 

Sentinel node biopsy reduces the risk of lymphedema, but it does not eliminate that risk.  I had 2 stinkin' nodes removed and radiation and I have le.  It really irks me when doctors tell women they won't get lympedema because they are only removing 1 or 2 nodes.  Radiation also increases your risk for le because it damages the healthy lymph vessels and nodes.  My le started halfway through radiation and I had 3 oncologists that said I didn't have le and 1 that said I did.  One of the things I noticed first was that my sleeve became tighter on my le side....that was my upper arm swelling. Later, I developed pitting edema. I pressed the tissue just above my elbow for 10 seconds and when I released the pressure, the indentation definitely stayed there and it didn't do that on my good arm. That's when I went to my oncologist and told him I had le (I didn't ask) and he agreed.

 It used to be that a 2 cm difference between the two arms was clinically significant (meaning you have le).  They now know that there can be subtle changes in the le arm before it gets to the point where it's 2 cm larger than the healthy arm.  There are "texture" (for lack of a better word) differences....the tissue feels spongier and is stiffer to the touch.  I use the 2 cm difference for convenience when I measure my arms.

You didn't mention if the arm you're concerned about is your dominant side.  Your dominate side will naturally be bigger than the other side.  You probably didn't notice it before you started looking carefully at your arm (if it's your dominant arm).  I guess that's one of the reasons they use the 2 cm mark.

I would pick at least 3 spots on your arm to measure and track (pick a freckle or something so that you have a point of reference!):  Your upper arm, another spot about 1 1/2 inch above your elbow and another spot on your forearm.   Le may cause swelling in one area, but not the others.  It's really weird. For instance, my thumb swells, but the rest of my hand doesn't. 

If the sleeve is causing a rash, I wouldn't wear the sleeve.  I would consider trying a different detergent to wash your sleeve and make sure it's rinsed really well.  If that doesn't help, then don't wear it.  A rash is inflammation and inflammation can get le going.  You could also try other brands of sleeves and gauntlets/gloves....kind of expensive and it would be trial and error for you. 

You could do manual lymph drainage instead of wearing the sleeve.  I would do it before and after you have a flight.  You can also do it every day.  I actually am doing it 2-3 times a day:  once in the morning to get things moving, one in the middle of the day to keep things moving and once before I go to bed to clear stuff that's been accumulating during the day.  The Northwest Lymphedema Center (http://www.nwlymphedemacenter.org)  has videos on their website that teach mld.  There are also youtube videos....make sure it's mld and not massage. The key is being gentle....the lymph nodes and vessels are under the skin, so it doesn't take much to move the fluid.  I use just enough pressure to gently stretch the skin a little bit.

Hope this helps!

djls 

If I have it, and I need to do something about it, I'd rather know about it early before it becomes a real problem. This sucks!

Exactly mimikitty. Sorry you are going throguh all this.  Now, I was told that RT posed no risk to getting LE. I tend to think that is  rubbish. I was OK then straight after RADS wham along comes LE. Also, I later had a prophy and even on prophy  'good' side  when they dont mean to take lymph nodes out, because of the nature of the surgery, there is a chance that some can be still be taken. Also your 'good' side is at risk as well, for the rest of your life. There is a recent study that proves this. 

You are doing the best you can and its sad that we largely have to be our own advocate in all this, but in the end, vigilance is far better than blissful ignorance. If LE comes along , there,  most certainly the bliss ends.  Theres only one way to deal with LE and thats properly. Im glad your sleeve is not troubling you so much. My skin is super sensitive and I uese sunlight soap... I dont know if US ladies have it there (Im NZ). Its extremely mild and no fragrance. A lot of the time fragrances can really cause problems. 

Youre right about LE being worse. I can totally understand that. LE is for the rest of your life...with cancer its fine, after all the drama, IF  it doesnt come back. How the heck are we supposed to forget, with all this hanging over our heads??? That makes me livid when people say that.  Fine if they want to do that, but dont push it onto those of us who have issues after the fact.

djls some good info in your post.  I really have been thinking about measuring my arm myself. Again...so much for forgetting, but we gotta do what we gotta do.

I believe Andrea Cheville tried to push for axillary nodes that drain the arm to be shielded.I will get the abstracts and post them.

Mimi, the videos from NW Lymphedema Center (the first link that djls gave you) are good for reviewing what a therapist has already showed and taught, but each individual's actual massage direction and order needs to be developed with their specific conditions considered. Scar tissue, type(s) of surgery, location of fibrotic areas, and other health conditions all need to be taken into account. Still, they're good basic instruction for self-massage.

Youtube has a number of videos, many of them aimed more at spa-type lymph treatments. Of the two above, the first one is a fair introduction to at least the order of a lymph drainage routine, but it leaves out most of the actual process. I do like its emphasis on slowness and light touch, though. The second one it simply misleading, and I'd suggest you avoid it. Calmness, relaxed muscles, and a very slow, very light touch are all important. It should be relaxing!

Hope some of that helps!
Binney