GRRRRRRRRR I HATE LE..........
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Jenlee, great way to handle intrusive and insensitive people--I really like the first response, because it puts it right back on them: "why do you need to know?"
Thanks
Kira
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okay: so my new garments went back to gottfreid today.. we lengthend the glove, which was an improvement i really liked, but, it just kept slipping down.. so, i asked the new fitter, why can't they put the "dots" on the band of the gloves?? she said no reason they can't!!and, wrote the request on their form..
i ordered the gloves, and sleeves at the same time, but i don't ALWAYS wear them together.. with no questions whatsoever, gottfreid decided they needed to be together, so they made the sleeve short, just to where we added to the glove.. that whole mess went back.. she even took drawings where the le is the worst, near the armpit, and asked them to make it long enough this try!!!
i just may like this fitter, after an "iffy" start..
the next set will be jobst, or juzo.. which one makes better gloves, kira? i know you wear them. i had jobst, (the ones i lost ) and i liked them for working around the house/garden better than the gottfreid.. i wear gottfreid more when im atrest ( relatively) im ordering one thing at a time this time, so they cant may any assumptions Hah!!(we know they will, anyway)
as far as the medical questions, even at the ER, i've been asked"whats lymphedema? i know what lymphooma is but..." jessh!!!! 3jays
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Not sure where to post this so will post here.
Last night was terrible storm wise where I live. Three tornadoes struck very close ... one within six miles ... this is my question - Drastic temperature changes and pressure changes make me hurt and make me swell. But last night was different. I laid in bed almost in tears for a couple of hours ... my arm was hurting so badly! The only other time it hurt like that was when driving thru the mountains of TN in a storm this past fall... felt like the insides of my arms were being wrung out. When the tornado sirens were going off ... knew that was part of the problem. But literally within about 30 minutes of the storm passing through my swelling was down and the pain went away. It was also pretty red and puffy ... never been like that. Scared me ... I'm thinking really, cellulitis?
It's OK today ... I'm a little more swollen than normal ...what is it other than pressure that causes LE to be so bad in a storm? I don't think pressure alone could do that or could it?????
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Dawne, what a lousy experience! How terrible to have such pain during worrisome circumstances.
Absolutely pressure can do that. I call myself the human barometer. I know when a front is coming in, I hurt and swell during extreme weather changes and during major storms. Pain and swelling in my trunk. Once storm passes, I feel much better. Oh, and stress does me in big time. Three tornadoes and heavy storms sound quite stressful!0 -
Dawne--I woke up to the severe storms last night. My arm was tingling like when I used to be wrapped. I did not think about maybe storm pressure being the cause. The sensation is gone today. I had on a night sleeve so no difference in measurements this am.
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Dawne--I heard about the storms, and the winds were 170 mph and I'm sure the barometric pressure changes were huge.
I'm so glad you're okay and your arm isn't red/warm anymore.
3jaysmom: my fitter switched DME companies, and ordered my custom juzo glove: they sent two--normally we do one at a time, and both had the middle two fingers too short--like what happened with the first glove that required 5 re-dos. There's this tendency to go, "Well, it's not perfect, but..." and then I remembered how much I paid (high deductible) and that I only get them once a year, and they should fit right. She's coming to get them tomorrow...Hope the next one or two actually go to the fingernail beds, not just 3/4 up the finger.
Kira
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Dawne, there was a program on PBS's NOVA show about the design of space suits. The first four minutes of that program is the best explanation of the effects of air pressure that I've ever seen. Check it out:
http://www.pbs.org/wgbh/nova/space/space-suits.html
Under the picture of that cute aerospace scientist wearing her classy new-fangled spacesuit, click on "Watch Next-Generation Space Suits" and watch at least the first four minutes. If you keep in mind they're talking about people with normally-functioning lymph systems, you begin to see how air pressure can be a special disaster for those of us with compromised lymph systems. (The whole program is interesting -- I wrote to Dr. Newman, the cute, blond scientist who's developing new spacesuit designs and asked if she'd think about how her new technology could be applied to LE garments, and she was interested -- but that was a while back. I should probably go prod her again...)
I sure hope everything's well for you today. More storms predicted tomorrow, yes? Maybe wrap your arm for added protection?
Stay safe!
Binney0 -
Really interesting about the barometric changes - we had that same system come through us yesterday (although it lost its punch going over the mountains). I felt miserable and bloated yesterday and couldn't figure out why since I couldn't identify any of my normal triggers. Today I feel much better and am much less bloated. It's a beautiful day out since the front has passed. I'm going to have to start tracking weather, the barometric pressure changes, and my truncal LE (and associated mood) and see if I can find a correlation.
For those of you who are in the affected areas - I'm so glad you are OK, but what a frightening experience. I've heard the "train roar" once - there was a microburst and 4 nearest houses to us were severely damaged and trees came down. It was frightening enough with just a microburst - I can't even imagine what a real full-blown tornado must be like.
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Binny - thanks for the Nova link. That was really well done & a good way to think about pressure.
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Does it make a difference to LE if the barometric pressure goes up or down? In other words, is it the change itself or the raising/lowering of pressure?
Leah
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Thanks Binney, I saw that program the other week and didn't even correlate what they were talking about with LE. hopefully the scientist can help with our garments.
Sheila
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Leah, that's a really good question, and I sure don't know. I wrap when we travel out of the valley we life in, and I wrap coming home again. I should watch the barometer more so I know which affects me more, high pressure or low. Guess I just haven't been very observant.
And here is another strange climate thing that interests me, but I don't know what to do with it: Awhile ago a scientist in another country (who had nothing whatever to do with lymphedema) did a study of ER admissions for cellulitis (not necessarily LE-related), and discovered that high ozone levels resulted in significantly more cellulitis cases. So does that affect us too? I keep meaning to watch ozone levels and see if they correlate to LE flares (which would be more conducive to cellulitis), but so far I just haven't gotten around to it.
I'm rambling, sorry!
Binney0 -
Newbie Here. Surgery a year ago April. Wear sleeve/gauntlet "fairly" regularly and do self-lymphatic massage "fairly" regularly. "fairly" = 2-3 times per week.
I am going to a "Lymphatic Research Symposium" in the morning and will let you know if I find out anything interesting.
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These days it feels like my hand is controlling my life. I've been wrapping since the second week of January and doing extra MLD, with little success. For the most part, wrapping just seems to move the fluid around my hand/fingers. To the extent that wrapping has worked, my hand refills within a few minutes of taking the bandages off. Then I started having painful hand parathesias. I get some relief by taking off the bandages, but if I do my hand blows up. I've got a very long plane trip coming up and if I don't get the swelling under control, I'm "grounded."
Can't remember whose expression it is, but I am working hard to pull my "big girl panties" back up. Some days I convince myself that the swelling is a wee bit better and I get the panties almost all of the way up, but on bad swell days, they slip right back down to my ankles. GRRRRRRRR ....
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KS1--you have been remarkably brave and uncomplaining in the midst of a totally rotten situation.
This just totally, utterly stinks.
I am personally hoping that your super specialists can come up with something that will make it better, and very very soon.
You are one class act, and deserve gorgeous loungerie, not some oversize panties...
Kira
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KS, Kira and I have a theory, based entirely on our own emotional state
, that a flare of any sort does something physiological to us that affects our capacity to cope. In other words, a flare sends our bodies into a state of despair.
We've noted that we don't even get better at it. Just, flare = grief. I hope we're wrong about that, but at least please know you're not alone, and pulling up one's big girl panties sometimes takes a whole cheer-leading squad. That's what we're all hanging around here for. Tell us how we can help!I'm sure you've tried everything, but refresh my memory -- have you tried wrapping looser? My hands (and arms!) swell as soon as I remove the wraps if I wrap too tightly -- rebound swelling. Less is more.
Gentle hugs,
Binney0 -
The barometric question is interesting. In wonder if it's not as simple as space suits.
For years, people with arthritis have claimed that they have changes in symptoms that correllate with weather/barometric changes. Finally somebody actually did a study and published it in a semi-major journal, and of course it's true. This was maybe 5 years ago? I don't remember if there was a proposed mechanism. But if it involves general inflammation, that would be a common denominator with lymphedema.
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You all are great -- don't know what I'd do without you! I agree about the LE flare/blues link: for me it's the sense of my body defeating me despite my efforts.
The looser I wrap, the less my hand reduces and it doesn't seem to affect the rate of refilling. If there are any places where the wrap is even slightly looser, the fluid collects there. If I bandage my arm, the hand swells more, so the therapists I saw in Jan told me to bandage just my hand. The LE therapist I saw in Feb said that this is not good long-term, so I have started adding a very gentle wrap (a single 10 cm bandage) from wrist to axilla.
Someone should write a blues song or country-western ballad for LE. Perhaps a collective project of the Swell Sisters?
My LN done left me and now I have the swelling blues ...
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KS1 - I'm sorry you are experiencing this. It does stink. I just posted about how my emotional state is definitely effected by flares. Yes, the sense of loss of control is definitely upsetting, but I feel the inflammation itself has something to do with it, too. I love Binney's response that "pulling up one's big girl panties sometimes takes a whole cheer-leading squad." How much stronger and less isolated we feel when we are not one but many! I am scheduled to fly in April, but unless I get my new arm issues under control and receive new garments that fit well, I will be grounded, too. Very frustrating. Hang in there!
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Outfield, I too find this barometric pressure thing interesting. I'm sure it's not simple -- nothing about the lymph system is either simple or predictable.
But I think there's a difference between the arthritis type of response to pressure changes and the LE response, because the LE flares with altitude change and plane flights, and arthritis problems seem to be limited to storm activity changes. Wrapping stops the LE response (or at least helps!), but it doesn't do anything for arthritis. Not sure how that can be, and it is true there's an inflammatory aspect to LE and arthritis, both -- but they don't seem to react quite the same way.I wonder, if we understood this better, if we wouldn't know a whole lot more about LE. (What kind of researcher would look into this -- a climatologist?!
)Binney, wondering
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I have a vague recollection that there are lymphatics in the periosteium of the bone--I learned that when I broke my hand and it swelled up like a balloon.
I'm sure there's overlap.
My hand hurts when the weather changes, but my ankles always swelled on planes before I developed overt LE.
KS1 and Tina, LE sure does wear us down, and it's the last thing we want front and center in our lives.
Your personal cheering section.
Kira
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I went to a Lymphatic Research Symposium yesterday. Two links: www.lymphaticresearch.org and google "Stanford Lymphatic" to find the latest news under the Lymphatic & Venous Disorders. Dr. Stanley Rockson spoke and was very optimistic about the next 2-3 years. Progress in this field that was slow decades ago has spike dramatically in recent years due to awareness and funding. Just thought I'd share.
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Purl, any details? He's given us "teasers" about medication, biomarkers and genetics--we're waiting for those to be published.
I saw the LRF had a symposium in Santa Barbara--what a great place!
Kira
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Purl, thank you!
And I'm glad the news was so encouraging. Some researchers are calling this the "Renaissance of Lymphatic Research." Better late than never!Onward!
Binney0 -
i too, don't know HOW it works, but my le is def. effected by barometric changes.. my dr. tells me im WAY better than the weatherman.. lol
im sorry so many of you have all these bad storms, etc to deal with.. wrapping helps me, but i, like Binney have "compression" sensitivity, so its tricky..
we'll see if gottfreid takes my fitters questions seriously, and adds "dotd" on the top band of my gloves..
Kira: do you find juzp or jobst softer/more effective for your hand?? gottfreid i use for bad flares, they help more then, but i forgot what kind I had that i lsot.. they were juzo; or jobst??? 3jays
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Greetings All -
I haven't posted here in awhile, but have read about the storm effects on LE, very interesting.
I am not easily finding information on what I think might be axillary web syndrome. I've had cording in the armpit since surgery - it looks like 4 guitar strings only in the armpit area.
The PT showed me a massage technique to help with this (firmly pressing on the area) and a "bye bye" wave, continuously flexing and extending the wrist while lifting the arm up overhead. Neither of these techniques seems to be helping. I do MLD twice a day. Is there anything else that can be done to help with this? Does getting rid of cording help reduce swelling?
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Just had to stop in and thank Kira and Binney for the step up and speak out site and especially the essential information for medical providers. Crucially handy for me this morning. I know the hours and help here must cost a lot of time and emotions, but, thank goodness for you guys.
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I have a different type of question. Is there any other company that makes patterned sleeves/gauntlets like Lymphadivas? They used to have a black lace pattern one but don't seem to have it now so I was wondering if it was available elsewhere.
Thanks!
Leah
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Leah, they do have this one:
http://store.lymphedivas.com/store/pc/viewPrd.asp?idproduct=2982&idcategory=29
There's another company called Slice of Fashion that makes a black lace sleeve COVER (not a sleeve, but it's to wear over a sleeve). I have reservations about sleeve covers because we need to be careful not to add compression, especially at the top to hold it up -- but if you check it out with your therapist it should be okay:
http://www.sliceoffashion.com/html/products.html
Black lace, huh?!
Very nice!
Binney0 -
Kate, doing the SUSO site was actually very therapeutic for me--it helped me learn and get the info in one place. I'm glad it is useful. I was invited to help out by Jane and Binney and what a gift that was/is.
I got an email from someone very high up in the LE world asking for AWS info from the site, and that lets me know that we did pull together some important information.
And there's always more work to be done.
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