Lymphedema in fingers

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KBeee
KBeee Member Posts: 5,109
edited December 2017 in Lymphedema

Over the summer I developed lymphedema in the back of my hand after vacuuming my pool. Arm and fingers were unaffected. After 2 months of wrapping at night, manual lymphatic drainage and wearing my glove and sleeve, it disappeared, only to be replaced by lymphedema swelling in my index and middle fingers in October. It has persisted and has my lymphedema therapist perplexed. It seems none of my docs have answers either. Today my index finger was huge, hot, and red. I went to Urgent Care and got antibiotics per my request, but the PA was clueless and told me perhaps I had arthritis (which she ruled out with an X-ray).🙄

2 questions...

1. Does anyone else just have lymphedema in s couple fingers (grateful it is not worse, mind you)

2. Who manages your lymphedema? What type of doc knows the most?

Thanks for any info you all may have


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  • Key2
    Key2 Member Posts: 77
    edited December 2017

    Hi Iowa

    Yes, I do have lymphedema in only ONE finger... I started out getting it in my whole arm to the wrist and out of nowhere I woke up one morning with only one finger twice the size as my other fingers!! Very strange...


    I went to my therapist and she said it happens for no reason she wraps it along with my arm and seems to go down a little but for the most part stays swollen. Now I am starting to get it more in the hand as well so I got this wonderful lymphedema machine that I can do my treatments at home it covers my hand arm and chest and works on my body for an hour. You might want to ask your therapist about the machine it’s called felxitouch and my insurance paid for it completely.


    Hope you feel better and your able to get the machine.


    Kimba

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2017

    yes u can get in fingers only. This tells me you have lymphedema that might be lurking a bit in your limb.fkextouch helps to clear nodes but self MLD and a glove worn daily will manage it from getting worse which is ideal because full blown le is a wild beast. It could go hard and fibrotic down the road if uncompressed and not cared for.

    Dermy and vascular docs know the most about le if you can find one that deals with it. Only one dermy LE wound doc in my huge city of a couple million population and he really doesn't take any one for three months waitlist. I had to beg my dermy to send me to him and finally said yes because he knew him. Otherwise I was a stuck duck with a huge finger due to a wound.

    Hot red sounds like cellulitis or infection maybe, so antibiotics is smart. If you have flu like symptoms this could be cellulitis if you get worse and it red spreads go to emerg asap and mention cellulitis. Most docs are clueless about le. They only spend less than a hour learning about lymph system.

    good thing you came here to get educated. Your a smart cookie.When I talk to docs they pretend they know about le swelling but then there faces change to clueless once I rattle on.

    Education is power.

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    I do wear my glove daily, and just had a custom one made with long fingers. I am tall and thin, so no gloves fit other than custom made ones. I also do manual drainage; these worked eventually to help my hand. Hoping they work with my fingers too. I work in healthcare and know how little most medical professionals know about it.

    I do know a few gals who use a flexitouch. My LE therapist said since my arm is not swollen, I am not yet a candidate. I will for sure keep it in mind though.

    I recognized hot, red as infection, I was at the clinic the second they opened to get antibiotics! LE therapist said to wait 2 days to wear glove so I don't spread infection.

    Thanks for the suggestion for a vascular doc. That's a great idea. I see my awesome MO at the end of the month. I'll see if he knows any vascular docs

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2017

    Hum. Sounds like your on the right track! Do keep us posted. I hope some other experienced girls chime in. Wishing you success with vascular doc.

    Edited to add;Oh sorry you asked who looks after le. Besides dermy , vascular doc Also I find aqualified lymphedema therapist knows the most as they deal daily with le. They can be a PT, OT, Massage therapist. Make sure they are not a weekend course taker that just hung up their sign. Vodder method therapists have to keep upgraded and train much. Good.

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  • Frill
    Frill Member Posts: 311
    edited December 2017

    I haven't had individual fingers flare, but for the longest time my hand, then finally my fingers became affected. Since I've had bypass surgery it's not as much of an issue, but while we were doing it, my super awesome great PTs told me to do the following:

    When doing MLD you can spend a lot more time on the affected fingers. During the day you can just rub those fingers whenever you think about it, as well as your hand. You can press a little harder than normal when doing your hand to really help force the fluid down. Usually MLD is a lighter touch, but I was advised that to get a little more pressure a try in my hands and fingers. Also, instead of each motion 15 times, on my hands and fingers I spent a lot more time.

    If you're not drinking a ton of water of day, see if that makes any difference. For me, the biggest change in my LE was dropping weight, nothing else made a noticeable difference except the bypass. You already said you were tall and thin (so am I now) so that probably won't be your magic bullet. From my research, LE in the hands and fingers is the toughest to fix, but it's not impossible. The hard part is finding the thing that affects your LE and address it. It could be salt, dairy, gluten, typing, exercise, lack of exercise, you name it.

    My LE doctor is in plastics and is at one of the hospitals who began the bypass procedure. He's wonderful. The first bypass surgery repaired blockages in my arm below the elbow, the second one found no blockages. I'm not cured, but right now I'm not wearing a sleeve. I need it when exercising, toward the end of the week with all the typing I do, but it's not this constant focus.

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2017

    Thanks Frill. That information is very helpful. Did they identify the blockages via ultrasound?

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2017

    Frill.Thx for all your experiences. That's how we learn here.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited December 2017

    My LE first showed up in my fingers and hand after carrying 3 plastic grocery sacks in one hand.

    After a lot of therapy, wrapping and MLD, it eventually subsided and then went to just my arm.

    I used to have to wear a glove then a gauntlet, but now wear a sleeve 12 hours per day.

    Sending my best wishes to you!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2017

    Denise. Wow you can get away without a glove. Doesn't the sleeve push fluid into hand. Please give me your secret. Most have to wear hand protection. I'm in a stupid glove but wear gauntlet on special occasion. I have barely any swell in hand. Maybe my glove keeps it that way.

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