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cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Lymphedema

sigh...all the progress I made on antibiotics is gone. I do not think the cellulitis is worse, I thinkthis is just a plain ol flare up due to the freezing cold up here in the hills. My upper arm has been hurting a little bit with the extreme cold.

The ID doc and I agreed to do a few more weeks of meds before starting therapy, but it's puffy now. I only ever wore my sleeve one or twice back in July. I may have gained or lost a few pounds.

I only have swelling in my upper arm...it feels like the whole sleeve and gauntlet pushes the fluid that way, and cuts me off where it shouldn't.

Should I give it a try again, or wait till I see an LE therapist in a few weeks.

BTW my PS said my LE is so atypical it's anyones guess....and it will all be trial and error. Sadly that seems like the most accurate think I have heard.

BTW has anyone ever heard that cold meds cause a flare?

Should I try for some sort of get up that is not a sleeve that will not have a band on my upper arm?

I am definately going to try going to the LE doc who practices in the city.

 Thanks for your continued patience with my "issues"

hugs and cookies!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2010

    Cookie, I think poorly fitting compression doesn't help--so I'd vote to avoid it, or try it for a short while and see how it feels.

    There are sleeves that go over the shoulder--I just got the medi product line book, and they have an "anatomical shoulder cap with shoulder strap"--there's a company called lymphadema sleeve co (I think) and they were at the NLN, and their sleeves extend across the upper back and go the opposite arm--Binney should know more about them.

    I can't see why cold meds wouldn't cause a flare--a cold can cause a flare.

    Hopefully others will post their solutions, and the LE doc in the city sounds like a good bet.

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2010

    Thanks....kira. Those are good ideas.

    Good to know about the cold. I had a bad one this week. I suspect that lying around sick is not the best, and that moving around is better.

    Cheers!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2010

    So I am taking the plunge and doing the paperwork to see somebody up here in the hills at the local hospital. She is a certified LE specialist, but I think she does other cases as well.

    It's kind of silly since my original LE therapist in NYC is a "renowned expert" who lectures to others, but the fact is she and I just did not click in terms of my arm.

    She had great suggestions and was very effective on my breast.

    Even the ID doctor said it's important to click with your LE, and I just felt she always had more serious cases and was trying to see fewer patients.

    I want to try to get a compression garment that does not cut across my upper arm, since that is where all the swelling is!

    I have fufilled even my out of network deductable for this year so if they can see me in 2010 what the heck.

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  • lisa-e
    lisa-e Member Posts: 819
    edited August 2013

    I just wanted to chime in and say that I have one of the sleeves from the Lymphedema Sleeve Co.  It is a bilateral sleeve and has the band that goes accross the back.  It is wonderful as it does not cut into your upper arm and also does not slip down.  I have worn it to work and it looks elegant unlike ordinary sleeves.  I have also worn it while exercising and it works quite well for that application.  

    Cookiegal, you may really like this sleeve.  One nice thing is that the material has silver ions in it, to help prevent infection.  Good luck! 

    (edited for spelling...)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2010

    Cookie, at the NLN, a noted researcher, who has LE was singing their praises--she loved the sleeves.

    Here's a link to their website:

    http://www.lymphedemasleeveco.com/

    They do look nice. Thanks Lisa!

    Kira

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