Does your Lymphedema Hurt?

I was just diagnosed a month ago 3 years after BC.  My swelling on the inside of my elbow and up is very painful.  It's sore to rub or touch and is that nerve pain along with achiness.  Does anyone out there have pain from the compression of the sleeve.  They are ordering me one that's not so compressive because the pressure really hurts where the fluid is built up.  They think it's because I have lupus and I have alot of pain anyway, but was just wondering if anyone else has that problem. 

Galsal, you are so right!  We know we have pain and even know when we have subclinical or mild swelling but they don't or won't see it.

My LE always hurts when it is acting up.  I get these areas of real "pain" and soreness on my ribs or back or under my arm.  Sometimes I can see or feel the swelling, other times not, but always the pain is what tips me off. 

My arms get the deep aching feeling and heaviness - mostly with barometric pressure/weather changes.

kawee,

Some people are pressure sensitive, so a change in compression class may help. I wore a Juzo dream sleeve which is a circular knit for 2 years or so, and got to a point I couldn't tolerate it because it squeezed my arm and got very painful when I swelled.  My therapist suggested a flat knit sleeve and I switched to a Mediven.  Made a huge difference.  Hope you find something that works for you.

Deb

Olearca- The sensations you described are exactly how it feels for me. Looking at my arms I don't think anyone could tell I have swelling but my LE therapist could tell right away. After just a few sessions with her, though, I've already got decreased swelling and most of the pain is gone.



I find it appalling that women everywhere don't have access to a qualified LE therapist. This is definitely something that needs to change!

Meggy- I'm bilateral, too, and have truncal so I can empathize.  I was job hunting before the LE dx and now I can't imagine how women manage with this.  It seems like most jobs it would be impossible to not aggravate the LE.  Can you try to apply for disability?  Seems like if your doctor and LE therapist document everything you might have a shot but I'm kind of new to all this.  Sorry!  I know the whole thing just sucks.  

Meggy-I think you might be able to get away with wearing sleeves. I wear mine at school all day and they just look like I am wearing long sleeves. Mine are black. I am not sure how it will be in the summer but for now it is helping a lot!

Meggy. If you can wear sleeves you can buy a product called Arm Candy. Google it. It is a colored sleeve that fits over your compression sleeve. It might do the trick. It will look more acceptable.

Cheap as I am, I found a pair of black footless tights that had a lace netting on the bottom of the ankle. I measured my length of my arm and then cut at the desired length. Then I cut a hole for my thumb in the lace area  and now I have a black sleeve cover with a lace gauntlet attached to wear and hide my sleeve when I want to. I don't always wear it but sometimes I can't get over the fact that my sleeve looks so ugly with my cloths and it signals many responses so it cover it.  Its the glove that I loath. 

If you do this make sure you don't have a tight pair of footless hose that will bind your upper arm and cut off your lymph fluid when you wear it.

As for typing, I think there  is program called "dragon speak". I myself would like to know more about it. I think you speak and it types for you.  How cool is that!

Stay on the threads and you will learn so much. We are all here to help eachother.

Don't underestimate your clients. I would hire anyone that could get my job done right. We don't care what problems a person has or looks like. we just want good services. 

I am just learning to wrap, Check out the thread, " hats off any that wrap" There I am getting good support and encouragement on wrapping as it can be frusterating to go at it yourself.

 Ginger:

I looked online at the lymphediva stuff.  Cute!!  I thought I had to buy them from the PT or OT.  Are they as good as those?   Like my girlfriend said, "if you have to wear the stupid thing, you might as well have fun with it".  I didn't see the gem ones.

Once again I get validation and encouragement from this site.  I have been second guessing myself over the last 6 months... 

I have sub-clinical LE in both arms and my trunc.  My pain is similar to what others are saying, a burning, achy pins and needles.  Sometimes my skin is so sensitive to touch that I want to scream and my compression sleeves hurt...

I haven't been back to my therapist for over 6 months ($$$ issues) and it seems to be managed ok with sleeves, glove and compression bra's/vest.   I ran into my LE PT and she did a quick measurement and look over (off the books bless her soul) because I have started to notice some changes to the sub-dermal tissue in my upper arms (kinda feels lumpy and uneven).  I am horrible with MLD, mainly because there is so little relief or improvement when I or my hubby does MLD. My measurements are down below the elbow but the same/maybe a bit higher in the upper arms.  Plus lately I have started to notice my fingers are feeling stiff, achy and hard to bend but they are not very puffy...

I hate LE!!!! I hate wearing sleeves! I hate it when people ask what my sleeves are for and them look at my arms with this 'your not swollen look'! Well DUH!!! That's why I am wearing the damn sleeves!

I work two jobs and I am so grateful that my LE in 'managable' but at the end of the day I always hurt...After a while the pain can really wear me down and I have to hide myself in a room to avoid inadvertently hurting people with harsh words spoken in frustration.   Sometimes I am so sad that this is my 'new' normal. 

Kate & Michelle,

My OC says lymphedema doesn't hurt.  She blames all my pain on the fact that I have Lupus.  Well, then, I tell her, why don't both arms hurt.  Mine is only sore when the fluid is.  I can't lay my arm down on anything.  And, you're right Kate, the more I do, the more my arm and hand hurts.

 Not familiar wih MLD.  What is that.  The sleeve wasn't too bad.  But once I started wearing that, my hand swelled.  Now they've ordered the gauntlet.  I'm afraid now my fingers will swell.  Just have to wait and see I guess.  

Kawee, don't wait and see on this, because once you have swelling in your fingers it's hard to manage. Insist on a full glove, and don't wear the sleeve again without one.

Because LE is chronic (and unfortunately, you already know all about "chronic") our relationship with our LE therapists is an important one. You might want to look around for a second opinion. Either way, insist on learning both self-MLD and self-wrapping. It's a steep learning curve,  but so reassuring to have those skills and be able to use them as needed. Here's how to find the ones with full training near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Gentle hugs,
Binney

Binney,

I have mild lymphodema but am a grad of FIT in NYC and studied apparel design many moons ago, still have some 7th ave connections so maybe could connect on something

lordie but dealing with all this makes me want to reinvent my life and would like to chat on it!

Hi all,

Didn't get the MLD thing at first.  She has taught me.  I do it everyday.  How long does it take that to work?  She also does it when I go twice a week with an electrical machine.  I hold one end of it and the other end attaches to her massage gloves.  So, far though, no change.  Course, I've only gone a few times.  I just HATE this!  To tell you the truth, it started as slight swelling on side of breast and a little under my arm, but it seems like the more they treat it, the worse it gets.  I am out of options because this is my second and only place to get another opinion.  We have no others.  It is a lymphedema clinic, that's all they do there and they are occupational therapists.  I already travel 45 miles one way twice a week.