Now what? It's RED!

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Spookiesmom
Spookiesmom Member Posts: 9,568
edited June 2014 in Lymphedema

I finally picked up my sleeve, gauntlet, and night garment at 8:30 this am. He showed me how to put it all on, felt good, fit good.



By 4:30 this PM my hand, including fingers, were more swollen than they have ever been, and reddish purple!!!! My fingers have never been swollen.



I took the gauntlet off, but left the sleeve on. I'm going to call him tomorrow but wanted to see what everybody thought.

Comments

  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited April 2013

    I see it's about a half hour since you posted this--are your symptoms any better? If not, how's about a quick phone call to the ER, describe your symptoms and find out whether this is something they'd like to see tonight?

  • bluepearl
    bluepearl Member Posts: 961
    edited April 2013

    ER...now. Could be infection like cellulitis which you do not want. 

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2013

    The gauntlet has been off several hours now. It's not red anymore, and the fingers don't look quite as bad. But the back of my hand is still up, it usually is.



    Still think ER?

  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2013

    Hopefully the experts will weigh in soon.

    Sounds like your garments are too tight especially if fingers are swollen and purple. If this is your first time in garments a long day like that is too much. Also,only start out a hour or two a day and build up. Take everything off because if you only have a sleeve on your fluid is going to be pushed to the hand. Your arm needs a rest from the garments. Elevate arm but don't tire it out, drink lots of water. and stick hand up in the air and pump fist every couple hours.

    That said, If you are getting sick quickly and the red spreads then you need to go to emerg and mention the word lymphedma and CELLULITIS. You would need antibiotics. 

    See some of the threads here on cellulitis or google stepup-speakout.org and search for cellulitis.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2013

    Thanks Hugz



    That makes sense. This LE guy is the pits. I've been unhappy with him from the get go. He did not say a word about building up, just let me think was ok to wear all day.



    I think I won't wear the night garment tonight either. At least it's adjustable!



  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2013

     I am not that versed in night garments but maybe if you tell us what your PT told you to do at night then someone here can confirm if you are going to be doing the right thing at night.

    I kinda have lost some faith in your guy. It is standard procedure to tell your patients to gradually build up your wearing time. I remember how sensitive my inner elbows were. It took months for them to not pinch from the sleeve. Thanks to Binney I put anti blister stuff on them and it lessened the friction. My inner elbow have toughened up a bit but still a sleeve that slips usually ends up with wrinkles in the elbow and that grinds my inner elbow. So you see a proper fit is essential. I just think your le gear is tight.

    Time to see a new person is right and go back to your fitter immediately so they can fix your problem as there may be a time frame on sending your stuff back if you have to.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2013

    He never said a word about what to do, or not, when, how long or anything. His words, just be diligent. To wear for 3 months. Can't get my insurance to pay for more visits, but I can call him.



    And that was it.



    He is also the fitter. There were no wrinkles in the day things. Stayed put.



    So now, after sleep, my arm looks like usual, hand usual, fingers normal. More coffee, and I will call him.

  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    spookie

    NO EXPERT HERE.  Just logging in to say I am hoping it is not cellulitis which is serious business. Please check that out.

    I tried a sleeve on for 5 mins once that made me red and  ' scratchy' ...an obvious allergy that went away with calming cream.

    Btw, I was told to wear my sleeve and glove from " the minute I got up until the minute I went to bed ".  I strated at 5-6 hrs a day because I just couldnt do 14 hrs at first.(grrr!)

    As for :I took the gauntlet off, but left the sleeve on.

    You really dont want to wear a sleeve without hand protection - ever.  I would snake them both off and watch for symptoms.

    Even if this is NOT cellulitis ( fingers crossed)  pls consider asking your DR for keflex antiB.  I have some on hand in my medicine chest in case of emergency.

    Good Luck to you- let us know.

  • Kicks
    Kicks Member Posts: 4,131
    edited April 2013

    Perhaps you have a bad fit or the wrong compression level.  Because my hands are slightly 'webbed'  and arms a bit longer than they 'should be' for the other measurements, standard/OTS garments do not fit me so mine have to be custom.

    For me, compression level is very critical - heavy makes 'things' worse - light works best.  My first glove and sleeve came in and I went to pick them up.  Put on and stayed there for 1/2 hr as my Guy wanted me to.  I left to go to my rad appt (35 miles away) and by the time I got there my hand looked like 'an over stuffed sausage'.   Called him and went back to wrapping and he ordered me new low compression garments which are great FOR ME.

    I do now have a gauntlet but I had to 'fight' for it.  He was right on that but gloves do not allow me the 'feeling' I need with working the horses but does not work as good on controling LE in hand.  So I work in gauntlet and switch back to glove when done.  

    With my night sleeve (has a 'guntlet like hand), I use an opera length isotoner glove under it.  I also have to 'over sleeve' slleves to use as I need them.  Usually don't use them but when needed I can add one or two of them.

    We are each so unique - there is no "One Size Fits All".   Educate yourself but do not assume that there is only 'one way'.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2013

    spookiesmom - sent you a PM

  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2013

    Spookiesmom, you'll need to check out not only the compression level (usually 20-30mm/hg) but also the "containment" of the kind of fabric your sleeve and gauntlet are made of. Some fabrics are simply more, well...confining than others, and if you're compression sensitive (which it appears you are!Tongue Out), then you need a softer (thinner, less stiff) fabric. Gottfried is the brand that works for my compression sensitivity, as the others cause my fingers to turn all sorts of unhealthy colors.

    If you aren't comfortable with the therapist, do look for another. This is a long-term relationship in which we need to feel confident contacting them for help.

    As others have said, don't wear the sleeve without hand protection. It may be you need to switch to a glove. My fingers ONLY swell when I wear a gauntlet. I'm better off without garments than with a sleeve and gauntlet, and that may possibly be your issue here as well.Undecided

    Here's information on proper fit of garments that talks about containment as well:
    http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

    Please keep us posted!
    Hugs,
    Binney

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2013

    The daytime garments are from Jobst. On the label it says Elvarex, ccl 2. AC 1/1 left made to measure with my name and acct #. Luna Medical Inc.



    None of that means anything to me.



    When I had them on they did seem snug, but it is also swollen. I had good ROM with it.



    Remember I have grouched about this guy previously he never taught me to wrap or MLD.



    I want to scream, but that would make something else hurt! LOL

  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2013

    Spookiesmom, Elvarex is one of the sturdiest fabrics there is, and some women can't tolerate them. (My therapist, who is well aware of my compression sensitivities, jokingly tells me I should not even be in the same room as an Elvarex sleeveLaughing). They're absolutely great for women who need the firm compression, but don't always work out well for everyone. Compression sensitivity often seems to be related to small build, so if you're slight or small-boned that would be another indication that the Elvarex might not be right for you.

    Just a thought,
    Binney

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2013

    Uh, I guess I'm about average bone wise. Overweight, but that should have been considered when measuring?

    Sounds like I need to call Luna see what they suggest?



    Special K PMd me, there may be a fitter real close to me and I can forget this schmuck.

  • kira66715
    kira66715 Member Posts: 4,681
    edited April 2013

    A few thoughts: Jobst now has a guarantee of a good fit, and these garments should clearly be returned, ideally within 2 weeks of receipt.

    I had an elvarex glove, ccl 1, and hated it. Some elvarex has latex in it.

    You do not want swollen fingers!

    Return these high compression garments and start over.

    A good fitter once said to me "with hands, less is more"

    I wear a custom Juzo ccl1, and even with a good fitter, we've had to send them back. The second redo is in, hope this one fits.....

    I had a novice fitter put me in Juzo ccl2 and my hands turned cold and purple...

  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    spookie

    I tried on  a SIGVARIS , and it felt like sandpaper. I am really hoping yours is an allergy as well ( rather then cellulitis)
    IF SO, the only thing that helps me is  Calming Cream (generic Eucerin) after washing the arm in a shower . It seems my skin has gotten very sensitive since LE.  Not sure if it is due to LE or from constantly wearing a  glove etc...

    In any case, I suspect Binney an kira are right. 

    Return those garments asap!

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2013

    I'm going to a place Special K suggested tomorrow. I'll have them on, and see if I can get their opinion. I don't think it's allergy, more likely not measured correctly.



    I will be calling the PT dept at my hospital with a complaint about him. And maybe go higher depending.

  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    will be calling the PT dept at my hospital with a complaint about him.

    Good for you!

    You are speaking for ALL of us, spookie! Thank you.

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