Sleeve & Pain Question

 My Sleeve always makes my arm feel a little worse when I have it on.

Yikes- not  a good thing at all.  Yep, you answered your own question. Snake that baby off.

Hi. I have both lymphedema AND nerve damage pain from my BMX with sentinel nodes and 1 axially node removal. The pain I felt first was the neuropahthy. Later, I could tell the pain from the LE. I can tell the difference between the two most of the time. There is the back of my upper arms and armpits, sides of chest, and frontal chest that I get the most pain from. When the LE flares up, the pain gets worse and is amplified by the neuropathy.

There are times that the neuorpathy pain prevents me from wearing a sleeve. But sometimes I find that the pain quiets down once I have the sleeve on. It is a very fine line living between the both.

What exactly does your pain feel like? Are  you sure that maybe you don't have a little nerve damage done as well? There are some tell tale pains that help figure out if there is neuropathy as well. That is why I wanted to know EXACTLY what your pain feels like. I learned there are many types.

Binney4, thankyou! i now have them bookmarked, i just have one other question. what is the difference between compression class one and two? 

cinnamonsmiles, yeah i do have nerve pain and damage and numb spots still, no sign of really getting better, but i think the joint pain is from arimidex. i was fine and dandy before all this, and strong. now i am just a little like a crazywoman about some of the stuff that tx's really does to a woman's bod, not to mention her mind. I am so sorry for all of us, everyday, but have enjoyed the cameraderie of women going thru this together, and sharing thier experience, strength and hope with all!

Dejaboo, there is another thing not mentioned, we do need to break in our sleeves. You dont say outright but I get the idea that youve not worn this sleeve very much or that it's very new?. Yes maybe it is the wrong fitting, but Ive had sleeves that have made my arm painful at first but have come better with use. Whether this is acceptable or not Im not sure, I guess this is a fine line. Its just a thought anyway. Also, this train of thought leaves less room for those of us now dependant on wearing our sleeves all day like I am.

kathec, Im sorry you are struggling with this wrapping. I hear you exactly on the swelling bumps and lumps... just when I thought I was getting better at wrapping, then I had another swelling episode recently I tried to wrap and got those swelling lumps like you said, and let me say, it makes you mad alright. Binney is right though...we just have to pick up and go on..... and if anyone DARES to call us brave well we're not. Brave acts require a choice..... like we had any with LE...

I agree with you Musical and Purple, but maybe we're brave when we push the limits of what we know could well trigger LE flares, because we just want to have our life back. It takes a certain bravado to spit in LE's eye and say 'yes, I will' even knowing that there might be heck to pay afterward.

Purple, me either!  Since most of us were given zero information about LE risks when learning our treatment plans, we were given zero choice to take even the simplest risk-reduction precautions.  We weren't drafted, we were hoodwinked.

I agree Purple that cancer is big business and there are some ladies right here at BC.org who are certainly switched on about this "stinking pink think" and are fighting it. Good on them I say. So... exploitation? indeed!

Truly courageous acts are usually enacted with another beneficiary in mind separate from ourselves and are always at the end of the day opt in opt out affairs, none of which is applicable to LE. What we are doing is the best we can with what we've got and our abilities to function in that. Some of us are weak where others are strong and visa versa. One thing we all share in common is we DONT LIKE LE so we help each other which is great.

When I push the boundaries and fail, I know I don't feel courageous or brave but stupid for not taking the necesary precautions and annoyed that I didnt get it right when I knew better. Im not saying there is't any leeway for trial and error, when working something through, but when we plainly know to do or not do something and work against that, then Id call it negligent or dumb but not brave.

Dejaboo, yea it is a fine line we walk with all this. Another thing to add to the mix is some days we just swell up more than others becuase of heat or whatever. I had an "episode" some months ago where I just couldnt get any comfort out of ANY of my sleeves at ALL. In the end I just ripped em all off because they caused dramas and aching. BOTH sides.

One thing good I can say, is as we get to collect more and more sleeves, (never throw them away) these can be tried on our "off" days when perhaps we've swollen more than usual or we've got a particularly dirty job like cleaning or gardening or something. Also these can be alternated as we're breaking in our new sleeves.

That said, an ill fitting garment is not good at all.

Elevating the arm can work wonders.

Linda, I'm so sorry! What a bunch of hassle! I'm sorry, but my brain's a sieve, so I don't remember if you have a night garment, and if so, if it's working for you. Night garments offer a different kind of compression that is gentler and usually more comfortable. (They're also too clumsy to use during the day, but in the evening and through the night they're usually a huge relief). If you don't have one, that's a good place to start. They offer good support that eases the pain/discomfort. Either JoviPak or Solaris-Tribute should be able to get it right for you.

Rebound swelling happens from extreme cold or from garments that are too tight. (Maybe you've had your hands swell after a good snowball fight when you were a kid. You come into the house and your hands start to thaw out, and they swell. Has nothing to do with LE--but if you do that when you have LE it can be really hard to get the swelling down again). Here's a short section about rebound swelling from StepUp-SpeakOut.org:

• Some people (usually small-boned, petite women) find that even low compression levels cause their fingers to turn icy and blue, or their arms to tingle and become painfully sensitive to touch. When they remove the offending garment their arm or hand may swell dramatically. In an attempt to control this rebound swelling, they and their therapist may decide to try a sturdier garment with a higher compression level, only to find that the problem worsens. In some cases, a lower compression level and a very soft fabric can solve this kind of compression sensitivity. Fabrics such as those used for neonates or the very old are good choices. They don't hold up well and may have to be replaced more often, but the therapeutic results may be worth the extra care.

I have a lot of trouble with compression sensitivity and can't use garments above Class I (20-30 mm/Hg), and it matters what the fabric is like--it needs to be soft, fairly thin and flexible. I can handle Farrow off-the-shelf gloves or a Juzo soft sleeve, but I normally order custom sleeves and gloves from Gottfried because their fabric is gentle enough to work for me.You've been incredibly patient with all this--hang in there a little longer and hopefully you'll soon have the garments you need.As for therapy ending because you're "stable," remember that you can revisit this with a new referral in a couple of months. Recent changes in insurance coverage expectations will hopefully offer "maintainance" care even when progress is no longer happening, but they won't take effect for another year or so. Do you feel comfortable that the therapist you're seeing knows the subject well enough and has the experience necessary to trouble-shoot your situation? If not you might want to look around for a "second opinion" when you start back to therapy again.I hope some of that helps. Wish we could sit down together over a plate of double-chocolate brownies and talk it all through!Hugs anyhow,
Binney