GRRRRRRRRR I HATE LE..........

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2012

    Purple, salt doesn't affect everyone's LE. In fact, maybe not even most people. Does it affect yours? Have you done any more or less controlled experiments to find out if excess salt causes you LE grief? I have a rapid heartbeat left over from chemo days, and I take meds daily to regulate it. They also drop my blood pressure, sometimes dramatically. I have to eat salt, but I find it really doesn't bug the LE. Weather changes do. Not wearing garments. Hot showers. Repetitive work like writing by hand or crocheting (Frowntwo things I used to love to do!) But not salt.

    So if you haven't really experimented with it, set up a careful experiment and see how you do. Possibly, even if it's a problem, extra MLD or a great-fitting night garment will make enough difference to off-set it. Onward!Kiss
    Binney

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited December 2012

    Binney - should she drink lots of water if she increases her salt intake? I think the problem comes when you get dehydrated. 

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2012

    Purple, You won't lose your support team. We all know two heads are better than one. So we are here to help with whatever.

    I know there is something herbal out there to increase circulation but I just can't remember.

    I am thinking maybe it may be cayenne pepper but if it is then watch your heart. My mom uses it when she gets a sore heart and it kick starts it back to normal. You will have to google for precautions and benefits.



    Again not sure of your heart problems but I know that icy feet and low bp can be signs of low adrenal function.

    Most cancer survivors have pooped out adrenals and then poor thyroids because cancer treatments are so draining, stressful and tiring to our adrenals( which in turn support thyroid hormone cascade) a test for this may be normal even though you can have many symptoms, some of which you describe. (Book I read on this, Author James Wilson, Adrenal Fatigue)
    Just shooting ideas in the dark here!

















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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2012

    Linda, very good point! We should be drinking lots anyway, but with salt consumption it's definitely helpful.

    Selenium is purported to help, in the form a two or three Brazil nuts a day (DON'T overdo it on selenium!) Also the bromelain in fresh pineapple is an anti-inflammatory. I've used them both and didn't notice any difference, but I like them both and this gives me an excuse to indulge.Wink
    Binney

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2012

    Bromelain is excellent for hypotrofic ( spelling?) scarring. Wasn't there a study on it for LE to? I took it for my BMX and I healed quick. PS surgeon was surprised. Great anti inflammatory but I now use a super strong type (anitinflamitory )curcumin that keeps my arthritis is check. I seize up without it!

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  • purple32
    purple32 Member Posts: 3,188
    edited December 2012

    Ok, went from pity party crying to being moved by your support tears . I should have known you ladies wouldnt give up on me ! Binney, I have such a fear of the salt now. I was really heavy on the salt for 2 days ( DR directed for my low BP ) when suddenly I could not longer wear my wedding ring.  I've lost 16 lbs since then (OCT) and it still wont go on  - LE of course. Maybe increasing the ater much much more would be good though.I know selenium is supposed to be good, but not so sure for what (?)

    Hugz I already have  a thyroid issue ( of course Yell)That's not the culprit supposedly.HUGZ  Pls tell me about the curcumin . I was looking into turmeric actually. What dosage etc ..>?



    Linda

    Many thanks for your prayers. Sometimes I just feel like I am hanging on by a thread.

    Thanks to all for your support!

    water water water..............

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited December 2012

    purple--Salt did affect my LE  until I lost 80 lbs.  Now it does not seem to when I have a day with high salt.  So like Binney says maybe you can try.  Good luck!

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  • Estel
    Estel Member Posts: 3,353
    edited December 2012

    and try it in moderation. Don't go heavy at first.

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  • dassi52
    dassi52 Member Posts: 206
    edited December 2012

    Purple, I just saw your letter. You have to deal with so much, but as others said earlier, we are here to lend you a shoulder to cry on, listen to all your worries and if anyone has a good idea they will tell you so. I am sorry that I have no answers for your issues, but hope that some of the ideas presented before will work for you. Thinking of you and wishing you will quickly find a remedy for your circulation w/o aggravating LE too much. By the way, I can't wear my rings either on my LE hand, even when the swelling is almost invisible after wrapping. The size difference might be minimal but it is enough to prevent the rings from sliding on. (esp the joints) . I don't think it has anything to do with weight loss.

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  • purple32
    purple32 Member Posts: 3,188
    edited December 2012

     I don't think it has anything to do with weight loss.



    Nope.

    It doesnt dassi, but it was proof to me that my swelling was real and not imagined, you see?

    Thanks so much for your kind response!

    * MY FOLLOW UP

    Soooo,  I have news. I finally got some real LE tx tonight!!!!!!!!!!!!
    Saw the somewhat infamous Kathy Fleming, and she was Fabulous !  She spent  a few hrs with me !  She took a full health history and decided that due to the low BP issues she did not want to do a complete MLD and work on the parasympathetic system and possibly relax things enough to make the BP go down more.  Therefore, she would instruct me, she would do hands- on, she would open up the terminus, evalauate me and advise me.

    Although she was appalled at the lack of tx I have gotten she concurred with my first therapist the minute she saw my wrist...I have LIPEDEMA.  This is not to say that I do not have LE.  She thinks I most likely do.  ( Hmmm...so now I have yet another issue !)  in any case, I told her my wrist has looked this way for over 2 yrs  ( LX was just last  May 2012)  She said I have had this longer than 2 yrs .  She said the tx wil be no different.  MLD , sleeve, exercise etc....
    She specifically asked me NOT to look up lipedema online and convinced me I would be horrified. If any of you know anything about, pls do not share it with me, because I have so many conditions right now, I am on overload.

    I am not at all fat.  Was very thin most of my life and am now more of a medium, and I do know lipedma is very complicated by obesity so I wil be watching my weight. I did look it up just briefly when the first girl suggested it, but I did not look at photos. Of course there are LE photos that I do not care to look at either. What purpose does it serve ?

    The good news is that when she was done with the hands-on, my ring and watch fit when I got home ( I just had to try to see if it was all in my mind ) I am stunned.  Of course I took them right off, but - WOW!  There is hope.

    I have most defintely concluded that my 2nd LEist had NO clue how to do MLD which is why she refused hands on.  When I showed Kathy how it was taught to me we werent even close .  I have been essentially wasting my time.  No bother- I am in good hands now.Kathy was extraoridnarily informative on the LE and you could tell you were in the hands of an instructor as well as a a highly qualified and caring therapist.

    She suggested I call the cardio dr and ask for compression stockings ( I did wear them yrs ago) not only for the lipedma but also my circulation, which I will do tomorrow.

    Between my sleeve, tank and stockings, I will take another  1/2 hr to get ready for work!Laughing

    I have no idea why I am in good spirits ( because I am not looking up the lipedema ?)  but I am feeling okay about things at the moment .

    Additionally, my fitter  never put in my sleeve order ( since BLK FRI) so I contacted Josh at Lympedivas just  2 days ago and asked if he could send directly house. They are here!  There ARE a few really good ppl out there to help us!

    I do know a large part of why I am feeling better is the unconditional support I have gotten from all of you wonderful ladies.

    I cant thank you enough!

    aside ........BTW, Kathy does recommend Lebeds.

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  • Estel
    Estel Member Posts: 3,353
    edited December 2012

    "I have no idea why I am in good spirits ( because I am not looking up the lipedema ?)  but I am feeling okay about things at the moment ."


    Purple - You've been heard and there is always healing and encouragement when we know someone gets it, gets us, gets our situation.  So thankful that you had the opportunity to meet with Kathy and that she can help you.  Most (90%) of my frustration with LE is that I feel like no one hears me or gets me ... and that's why I've found this board so beneficial.  My bet is that you are good spirits because someone now gets it and even though in some ways you didn't get the best news ... you are going to get help and good help.  Laughing  That is a gift! Enjoy the good spirits and don't let them fall.  xo

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2012

    Dawne-Hope nailed it: you got validated.

    My daughter coined the phrase "denying my reality" about physicians when she had a difficult medical problem as a teen, and this is what we experience.

    And, as I pm'ed you: my amazing, wonderful LE therapist, Vodder/Klose trained, has lipedema and treats it and is on a mission to spread education about it, and she looks amazing. She knows Kathy well.

    All right, I'll bring the Lebed out of storage.....

    Purple, so glad you were heard, validated, treated and have a wonderful resource. All the confusion sure does make you doubt your reality, and that adds insult to injury.

    Kira

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2012

    DOUBLE CHOCOLATE BROWNIES FOR ALL IN CELEBRATION FOR PURPLE'S SUCCESS!Wink

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  • Kay_G
    Kay_G Member Posts: 3,345
    edited December 2012

    So happy that you feel you are getting the help you need now, Purple. Kathy sounds fabulous.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2012

    Hey, hey!Cool Purple, I share your relief at clarity, caring and validation. A good therapist is worth gold!

    Or better yet, chocolate!
    Hugs, healing,
    Binney

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  • purple32
    purple32 Member Posts: 3,188
    edited December 2012

    Many many many thanks to all of you ... I wish I could provide the chocolate through the net ! Kiss

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited December 2012

    Purple--You are feeling so good because you are now in good hands with a good therapist!  I am so happy for you.  Yes, it may take extra time to get ready but worth it when you get results.  LE does take time.  I think we have all learned that.  Stay on your high.  Becky

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited December 2012

    Wow Purple, isn't it nice to be validated!  I understand completely!

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  • nibbana
    nibbana Member Posts: 464
    edited December 2012

    Congrats on nabbing a rock star therapist purple. You sound like your in very good hands.

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  • GottaloveNED
    GottaloveNED Member Posts: 211
    edited December 2012

    This is not a grrr... But as long as we're sharing the warm fuzzies... I got an email from my LE therapist - I might be able to be a part of the extended testing of the tribute day sleeve from Solaris. Here's to new hope for a better ( or at least different) garment option on the horizon!!!

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  • dassi52
    dassi52 Member Posts: 206
    edited December 2012

    Great news, Purple. The LET sounds amazing. Wish I had access to her or someone similar. Hope you continue to do well!

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited December 2012

    Purple - what a difference in your voice!!  It's not only validation, but there's something about actually having a game plan to fight the LE.  No wonder you feel 100% better.  Chocolate for all!!!!  Tongue Out

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  • Marple
    Marple Member Posts: 19,143
    edited December 2012

    How wonderful to read some good news on the GRRRRRR thread.  Sometimes things do work out well.  It makes me feel good to read that others are having their problems addressed in a way that works.  I must FIND my Lebed tape before I can even dust it off.  What positive reinforcement though to start up again with it.  (Maybe if I wear a scarf I'll feel more like using the tape.Tongue Out)

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  • purple32
    purple32 Member Posts: 3,188
    edited December 2012

    Thanks again, all!

    Yes marple, dust that DVD off and don your scarf. She also recommends pool walking or pool exercise or swimming for anyone with access to a pool. 
    Wouldnt it be awseome if all of us could make  a DVD together ? Imagine that dance party! Surprised

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited December 2012

    Ladies, as I just started the Lebed for the first time.... start out very slowly... I did 10 minutes, minimum arm movements per LE T's request and my fingers are burning... I was wearing sleeves and gloves during this... maybe the asthma/bronchitis isn't quite better enough??? I don't know... just take it slow and don't overdo...

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited December 2012

    Purple, You are talking about my boyfriend that wears the scarf aren't you? Hands off he's mine.Cool I have a date with him just about everynight and sometimes I see him in the morning too!Laughing He makes my heart swell and my arm stabilzes when I see him.Laughing 

    GMA, You just are such a trooper trying to comply. You get a big kiss from meKiss I hope your pain subsides.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2012

    Hugz, you're cracking me up!Laughing Gotta go get my scarf and join you for the Lebed opening.Kiss
    Binney, literally LOL!

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited December 2012

    Hugz & Binney, my favorite part is the bubbles and the beach ball :-). Fingers are still burning and breast hurts. Guess 5 minutes and work up real slow.

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  • purple32
    purple32 Member Posts: 3,188
    edited December 2012

    Hugz

    You are hilarious!

    I wish we could all get boas and do our own DVD. 

    Hey, I know the guy  you're are talking about ... don't be fooled by him sitting in the background.  He is the sexy, silent type - and he is mine, all mine ! Kiss

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  • purple32
    purple32 Member Posts: 3,188
    edited December 2012

    GMA

    What kind of gloves were you wearing?  Full fingered ?  Did you get too hot in them ?

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