Despite my best efforts...

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BoobsinaBox
BoobsinaBox Member Posts: 550
edited June 2014 in Lymphedema

History:  BMX 2006, surgeon lied and said he hadn't removed nodes and I had no chance of LE. 

2007: saw path report and surgery report; discovered ALND 12 nodes Left, 9 nodes R; I had begun reading this board about 3 months before, and finally realized I was in danger.  Surgeon, and his partner, whom I also saw, both said I didn't need follow-up because of my bilat for DCIS.  I insisted on prescription for sleeves and gloves before I had to fly, and got them.  No problem with flight.

2010: finally found a doctor who understood my risk for LE because he was going to do surgery on my hands for arthritis.  Said my risk was 100% and sent me to a Vodder-trained LE therapist. She taught me MLD (I do it every night), said I was stage 0 (I would wear my sleeves and gloves whenever I had to do heavy work or felt that heavy, slightly achy feeling, but it would then go away fairly quickly.) I postponed the surgery, as I needed to move out of state.  Maybe next year, if I find another good surgeon.

NOW...All that is changing this week.  I developed a rash on Tuesday night (I believe due to strawberries, though not positive), first on one patch on my arm, then on the whole L arm, then the R arm.  Next morning it was on both legs, and finally on chest and abdomen.  Can you say ITCH???  I thought doing MLD was a bad idea, as it made the itching worse to rub it; I've been drinking lots of water; deep breathing; checking my skin "wrinkles".  (Surely LE has to be the only reason any woman ever wanted wrinkly skin!!!)  This morning, there are no wrinkles.  The rash is much better on my legs and abdomen.  Arms still itch constantly.  I've used Caladryl, Lanacane, and Hydrocort cream, each applied with upward sweeps, and each somewhat effective in their own turn.  

I haven't been wearing my sleeves and gloves, and now I wonder if I should or not.  I have no doctor or therapist or anyone here to see, and we all know ERs don't seem to know anything about LE.  I'm turning to my gurus here for advice.  

Dawn 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2011

    Dawn, yikes!Surprised I'm really sorry you're dealing with this. Strawberries, huh? And they look so innocent!Undecided This is one of those times when it's a nightmare to be without a doctor you know and trust. Aaaaargh!

    Good for you for keeping up with the hydration and deep breathing! Elevation will help too. If you know how to wrap, that would be the place to start with compression, adjusting the whole thing a bit looser than usual to see how it's tolerated. Short of that, I'd think the daytime compression garments might be kind of hard on your skin, yes? Have you got some old, kind of loose ones you could try for 15 minutes or so at a time and see? On the other hand, if your arms are swollen at all the garments won't fit correctly, so be aware of that and skip it entirely if the fit isn't right.

    Where MLD is concerned, you might start with just node-clearing several times a day, if it doesn't aggravate anything, and gradually move on to gently clearing your trunk, then trunk and upper arm, then eventually the whole arm -- as it's tolerable. It's tempting to do the MLD too hard and too fast in an effort to get that puppy back in shape, so take your time and relax before you massage, and think about "kitten-petting gentle."

    Scratching is a danger here, so keep your hands and fingernails super clean and wear something with soft long sleeves if you can, so your skin stays covered and you can't accidentally scratch yourself. Watch for signs of infection (keep track of your temp, or any sudden new swelling or redness), and if you suspect that then you DO have to head for the ER.Tongue out

    This would be a good time to start checking out the Therapist Locator for a new therapist near you. It might be reassuring to have some help getting everything back down.
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    If it was me I do know I'd be in a panic and convinced that my arms were never going to be in control again, but happily that's not the case. Once the rash is gone you'll regain the ground you've lost to this rash.

    That doesn't actually answer your question, does it?Frown At least keep us posted and please know we hear you! Real gentle hugs,
    Binney

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  • DiDel
    DiDel Member Posts: 1,329
    edited June 2011

    Dawn where are you located?? Maybe someone on the boards can recommend someone to you.

    In the meantime. can you take a benadryl to relieve the itch??

    You poor thing,..hang in there I hope you find relief soon

    Diane

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  • Christine5
    Christine5 Member Posts: 78
    edited June 2011

    Good luck! Keep us posted!

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited June 2011

    Thanks to all of you.  

    Binney, I will try wearing the sleeves and gloves and see how they go.  Actually when something is always against the skin rather than touching and "un-touching" all the time, it is more comfortable, so the sleeves may help, if I am not too swollen.  And it really isn't terrible swelling, but I have read here often enough that I know that I was already swelling before I could tell.  I did clear my nodes this morning, and I will continue doing that, and I will add more elevation.  

    (Edited to note that sleeves were too tight, so I took them right off.  Rash is getting better, however, so I am hopeful I can get arms back in shape soon.   I haven't been taught wrapping, as the swelling has never been really noticeable before.  Once I find a therapist, I will learn!)

    DiDel, I can't take Benedryl, but I have doubled my generic Zyrtec. I'm in Indianapolis area, so if anyone here has recommendations about a good LE therapist (or doctor who understands LE) I'm open to hearing about it!  Feel free to PM me, if you have info, anyone.   

    The itching is better at the moment, so I am hoping things will settle down soon.I can actually see some wrinkles in my arms now (thicker than usual), which I couldn't earlier, so that is encouraging.

    Thanks again for your responses and help.  If I hadn't had all of you on my team for the past 4 years, I'd be a basket case.  As it is, I'm just a case!  Wink

    Dawn 

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited June 2011

    Update:  My wrinkles are returning farther and farther up my arm, but they are not the thin wrinkles I'm accustomed to.  Still some fluid there.  I managed to surround myself with pillows last night and stayed on my back most of the night with each arm on a pillow.  Not my best night's sleep, but helpful for the swelling.  The rash is nearly gone, and the itching is much improved, though not gone.  Note to Binney:  I am very good at NOT scratching, as I know it really makes the area itch more.  But I still whine about it a lot!  

    Thanks again for all the helpful suggestions!

    Dawm 

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited June 2011

    Dawn, I'm so sorry - and I can so relate. Glad to hear you're feeling better!

    Ever since tamox., I have allergic reactions to everything, and actually developed asthma.

    Binney and kira know way more than I do, but my experience is this (I had some kind of reaction recently to one of the many stupid medicines I'm having to take)- it seemed that the allergic reaction definitely made my LE worse, but doubling up on MLD and my flexi-touch, and bandaging really helped me.  Also, I got a cream from my onco. that took care of the inflammation and rash within several days. 

    kira told me one time that any kind of cold or infection (anything that adds stress to the lymphatic system) is going to make LE worse, and I have found that to be true.  Ditto an allergic reaction.

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited June 2011

    Thanks, Suzy!  I found the names of two Lana Certified LE Therapists not far from me, and I'll be trying to get one of them to be fantastic for me!  I guess I need to get a doctor first, to write a prescription.  I'd never had visible swelling before, just the kind I could feel, so this was really scary.  We just moved out of state, but isn't that when these things happen?  And on weekends?  Anyhow, I wasn't taught to wrap, because I wasn't experiencing that much swelling.  Well, now I want to learn!!!  The rash is about 90% gone, and the itching is about 80% gone.  Whew!

    Dawn 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2011

    Dawn, I've been away from the boards for a bit--some medical stuff with my husband, scary, but seems to be resolving--this really sounds like quite the allergic reaction.

    There is a rash: Steven's Johnson syndrome, that can be very dramatic, and actually very serious, and can be triggered by a virus. In my experience, strawberries are terrible for causing oral allergy--swelling of the mouth and hives, but I haven't heard of such a dramatic systemic reaction before, but anything can cause anything.

    Whether this is LE or just generalized swelling from inflammation, it sounds like evaluation is a good idea.

    I like zyrtec--it's the metabolite of atarax, a good drug. Aveeno baths may soothe your skin and they can be lukewarm. 

    What a horrible thing to happen just after you've moved. And it is a law of nature. 

    So glad it's resolving. And yes, only with LE do we get thrilled to have wrinkles.

    Kira

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited June 2011

    Kira,

    Thanks!  I had a similar reaction to too many tomatoes about 15 or 20 years ago, but that was pre BC and LE, so all I had to worry about was the itching that time!  Looking at my arms and seeing how tight they were, and how when I tried MLD the skin just didn't move and how much too tight my sleeves were was very scary for me.  This was my first real flare.  It didn't start until the morning of the third day, I think, so I believe my system was trying to keep up, but I didn't try to do MLD after the itching started, because it just made it itch more, which just made it swell more, it seemed to me.  I have done MLD the last two nights, and that and the elevation and all the water seemed to make a big difference, and of course, the rash was improving too.  I hate looking for doctors, and especially so now that I have the condition so many doctors don't want to admit exists!  So much to do with a move, and I had hoped not to have to do this just yet.  Oh, well.

    I'm glad your husband seems to be getting better.  There are certainly a lot of ways to have stress in one's life.  I'll be thinking of you as you get closer to your move, and hoping that all will be well with you both.

    Dawn 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2011

    Thanks Dawn, he was moving boxes from the attic, at a wild pace, and suddenly broke into a sweat, got short of breath, and his chest felt funny. Bought him an admission to rule out a heart attack. He seems to have passed the stress test today: but it was really scary. He hauled a portable dishwasher up three flights of stairs for our younger daughter, and admits that was hard on him. His good friend called and read him the riot act today about trying to move things like you're 25.

    Leaving him on the cardiac floor, on the eve of father's day, with both daughters and SIL upset was not a happy time.

    He wants this move so badly, and he just gets frantic with the packing and organizing. 

    Scary wake up call. 

    At the cardiologists' today: I looked around and thought that it was almost as bad as being at the oncologists--not a place people want to have to go to.

    Glad you're getting better, and he was released with instructions "not to lift"--he didn't want me at the stress test, but ironically, I had his wallet in my purse from his admission, so I had to meet him there. 

    Kira

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited June 2011

    Kira,

    Our move only left us with cranky backs, but we finally got them smoothed out.  We didn't downsize enough, so we still have boxes sitting around, and I'm dreading having to do more of that stuff.  We'll get it done, though.  And I trust you will also.  I really hope we never have to move again this time!  And I hope you enjoy the new place.

    Three flights of stairs and a dishwasher by himself... what was he thinking?  Hope he learned his lesson!

    Dawn 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2011

    Dawn--we cleared out the house to "stage" it--and it was so nice not to have clutter. Now I want to throw everything out.

    I think he learned his lesson a really hard way--last time we moved was 20 years ago--and he still thinks he can do everything.

    Ironically, everyone babies me, because of LE, and he just ramps it up.

    I need to throw it all out before we move: I'm finding that giving it to Salvation Army, Big Sisters and people we know who want/need our stuff is rewarding and helps clear the clutter.

    Just waiting on the final reading of the stress test: but I think, unfortunately, that it will raise a concern that won't go away quickly: a sense of vulnerability that wasn't there before.

    Kira

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited June 2011

    Kira,

    We did a lot of clearing out and really enjoyed living clutter free.  We were determined to do the same when we got here, but alas, even with 3 months of giving porch-loads of things to Family and Children Services, Amvets, and United Cerebral Palsy, which were the agencies with "trucks in your neighborhood" on a regular basis, we still have too much stuff.  We'll be donating towels and so on to the homeless shelter, and Goodwill will get the rest, I guess.  We really do want to have a comfortable space to live out our lives!  We hadn't moved in 10 years, and I could really tell a difference in what we could do.  Took a LOT longer to accomplish the same amount of packing.  Partly it's the arthritis in my hands and partly the LE for me, and my dh's back.  He's in great shape, but 10 years does make a difference.  Best of luck with your selling and moving, and with the test results.  We're still waiting to get our house sold. Frown

    Dawn 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited June 2011

    For those of you moving & getting rid of stuff - my sister told me that the places she donated to sent her receipts with estimated value on it for tax deductions so make sure you ask if they do it. She gave away what she thought were bags full of junk and it was valued at over $1500.

    Leah

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited June 2011

    Wow Kira--Please tell your husband to take it easy.  I hate moves more than anything.  Dawn--Hope things are getting better for you.  I love strawberries--what a horrible outcome on such a delicious food.  Becky

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited June 2011

    Becky,

    I love strawberries too.  I think I just ate too many for too many days in a row.  It may have been something on the berries.  I'll probably never know for sure.  I'll try them again another time in serious moderation, and without dyes or pesticides!

    Leah S,

    Thanks for the tip.  In the US, it is my understanding that organizations are not allowed to give people a value, but people can value things themselves for the receipt.  Then the  IRS burden of proof is on the donor!

    Dawn 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited June 2011

    Dawn, you might want to check that - my sister lives in Los Angeles!

    Leah

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited June 2011

    Leah,

    Perhaps it is the way non-profit organizations prefer to do it, so they don't have the burden of proof.  It has been this way for over 10 years everywhere I have either worked or donated.  There is a website that tells what things are worth, so if you keep a record of what you donate, you can figure up the value.

    Dawn 

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