GRRRRRRRRR I HATE LE..........
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Ok. So I wore my sleeves, stayed hydrated and did my fist pumps but my arms and foobs felt like they wanted to explode when I was up in the plane. I was not expecting to feel so much pressure. Is this typical?
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Ginger, I fly often and sometimes get aches and heavy arm feeling, but not what you describe. But my LE is mild. Are you normally susceptible to the horrid swelling feeling when you exercise or are very active? I do remember having something like you described in the months following my diep recon, when I first started flying for work again, but it eventually settled down. But you are pretty distant from your recon, so that doesn't seem a likely explanation.
I wear a compression shirt or cami with my sleeve when I fly, and I think that helps.
I am so sorry you have to put up with this!
Carol0 -
Ginger, dang anyway. Maybe their salty meals did a number on you. But who really knows. It's all a crap shoot. Yes the UNDERAMOUR compression tee may have been a good idea. It stinks when we do our best to comply and then get shot down with swelling. Uggggggg, grrrr,bahhhhhhhh. Hope it settled down. Try some lebed opening exercises.
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Good morning ladies,
I'm new to this thread, though I'm not new to lymphedema. And GRRRRRR is exactly how I'm feeling. In a nutshell - I'm having a flare-up in my hand and it's slightly painful. I'm not sure what to do.
I developed Lymphedema about 18 months ago following my lumpectomy with nodal removal. It is a mild case, and I wore a sleeve and gauntlet for a while and it calmed down completely. I stopped wearing my slleve except to fly. In June, I have BMX with immediate DIEP. Everything was fine.
Last week my hand swelled up like Minnie Mouse, but the arm was okay. Here's what I'm wondering. Would sudden activity cause my hand to swell? It was about that time that I started walking my dog again, and riding my bike (without sleeve or gauntlet).
Or - could it be some kind of insect bite? The swelling started after sitting outside one evening, and there was a slight stinging sensation. I read on one of the other threads that insects are attracted to protein-rich lymph fluids, and a bite might cause infection.
I going away tomorrow (camping) and am not sure if I'm over-worrying or not. I am exaggerating when I said Minnie Mouse, by the way. The pad of my hand is sore and puffy, and my fingers are a bit swollen.
Any advise would be greatly appreciated. I've called my lymphedema clinic this morning, but I'm still waiting to hear back. Thank you
Janet
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Welcome Janet,
I find any vibrations, pulling or bumping around will cause swell. Also the heat will make things worse. Make sure you go to see a certified LE therapist and drink plenty of water. If there is any redness or warmth don't wait to see therapist go directly to urgent care or emergency. You can find out more on the step up speak out sites:http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm and http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
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Janet, Welcome to the threads. Yup we are swell people alright, so you are in good hands here and glad you posted. Yes your bike could trigger Le because your arms are hanging down. I would recommend a glove/gauntlet and sleeves for any strenuous activity. Perhaps your dog pulls and this could also be harmful, still if it is a big, fast walk I would wear the LE stuff. GMA gave you the good website to check out. Some girls here created it.
Watch for bug bites and sunburns during your camp trip. Attend with anitbiotic creme for bites and don't scratch even once. Keep a eye on them if they get big or red spreads then seek emerg help and ask to be checked for Cellulitis . Dont even think about getting burnt like I did because this contributed to my development of LE.Cover up.
You really need to get this under control so keep bugging the LE clinic or go visit them unannouced this afternoon before your trip which no doubt you are busy packing for. Otherwise if there is no serious infection then pop that glove and sleeve on for the trip. hopefully your MLD girl taught you selfmessage, wrapping for emergencies like this. Drink tons of water, stick arm straight up into the air and pump first 25-30 times slowly to help fulid the fluid out of your hand, Deep belly breaths every so often.
Do post with any question. Hopefully our experts will come on board for more help. Dont give up. and do have a nice trip. Post us if you run into problems on your trip. take care.
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GmaFoley & Hugz4u- Wow - thanks for all the information. I feel better just connecting. Is the anitbiotic cream and over-the-counter thing, or do I need a prescription?
The frustrating thing is that it seemed so under control for the last six months, and I'd almost forgotten all about it. (Poor me). I even made it through a recent heatwave without and difficutly. The dog in question is a basset hound who is built like a Sherman tank - so he's slow and pokey, but once he gets a scent, he's fast and mighty. I hadn't walked him since the surgery, two months ago, but I just started again this week. So maybe that's it. Maybe the pulling is just to much for me.
I appreciate the feedback. I hope you all have a nice weekend.
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Janet. Polysporin will do. Do invest in a good sunshirt soon or at least a UV big umbrella. Lots of year end sales right now at the sports shops where you can get them. I got bug/sun proof shirt from Cabellas sport store. I hate wearing bug spray and chemicals but I would rather not get bit. Sorry threads are slow during summer months but we do come on so do post.
Stick with us and we will stick with you!:) Oh... and a hugz4u too. There now you have been sworn into the group!
PS. Never forget about your LE prevention otherwise it will come on like a strong wind when you don't expect it.
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Hugz - Thanks! Polysporin packed. Long sleeved linen shirts packed. Sunhat packed. As well as the six pillows in need to support myself since the DIEP surgery.
When did I get so high maintenance?
Janet
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Janet, for now you need the maintenance !
be good to yourself, take help when you need it or even if you do not think you need it.....best of luck
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janet, Ohhhh. I love linen.,, Just make sure it is a tight weave so you don't get sun through.
Yah speaking of high maintainence...... My friends go into a drug store............ they come out with a bag of nail polish,make-up, jewlery, lipstix............ I come out with antibiotic creme, bandaids, sun creme, bug spray and yaddah yada .......you get the picture............. My high maintainence bill looks a little different than there's.... and is not much fun.........Bah.. this dang LE.
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Hugz wish we have a like and dislike button. I'm getting ready for my first plane flight since BC. Corporate meeting. First time actually meeting the staff of my company, including the management and CEO. Business casual dress? My business casual is jammies & slippers. What am i going to wear with sleeves and guantlets? Suggestions on what to bring and wear?
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Well I am still in LE denial at times so I would wear a long sleeve blouse and a skirt or black pants. My shirt probably would have pattern on it to confuse where the sleeve ends and glove begins. Its probably all in my head but it makes me feel better.
Too funny about your dress code. I love it. Wish I could go to work like that. I can get away with sweat pants once in a while.
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My problem with long sleeve shirts is i have panic attacks when i wear my sleeves under. Have to wear short sleeve blouses. BTW my office is at home and we don't do conference calls
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GMA, I SO understand the panic attacks with all this paraphernalia!!!! I cannot stand anything tight, so refused to wear a sleeve for prevention for the first year and a half after surgery, no problems at all! Got complacent, didn't even THINK about it. So did just a wee bit of gardening when the weather got nice first week of May, and BAZINGA! LE within 2 days.
Now I have learned a VERY tough lesson, have been promoted to compression class 2 rather than compression class 1 for maintenance (that is I will be IF I ever get out of bandages). I have tried those sleeves. They are MISERABLE!!!!!!!!!!!!!!! My skin is raw and feels like a sunburn as I put them on, persists for as long as I can tolerate having them on. Life sucks when you cannot focus on anything besides that horrible awful feeling of a useless arm that requires near constant care!!!!!
I don't remember if I posted my story here, but short story is I went to LE clinic for a month, seemed like we changed treatment or wrapping technique with each visit, was prescribed a sleeve and glove, and dismissed from therapy without having an actual working garment. I have ordered and sent back multiple OTS and custom garments so far. I went on vacation at the end of therapy, used bandaging mostly, but had a Jobst sleeve and Mediven glove that worked fairly well together, but both were only class 1 and so I only used it a few hours a day to go out to eat, etc. Back in bandages when I got home, still no usable garments, complained to BS and PCP, so I got back in with a new LE therapist, with the first visit a day before I left for a beach vacation. She said to bandage, but do take a little time to ENJOY life, so I did. I walked on the beach each morning for 1 hour, without any sleeve, but lots of sunscreen SPF50, then did MLD for an hour, then bandaged. Occasionally used my glove/sleeve combo for going out for dinner. When I got back from the "worst beach vacation ever" (it was a GOOD family vacation, but was not enjoying the wonderful hot humid ocean, cooped up in air conditioning way to much!), new LE therapist and I agreed to trying the full 3 week INTENSIVE DCT rather than the hit-and-miss approach from before. She also suggested that my skin may be very sensitive to pressure (duh!) and the LE may actually be worse with more compression. So I am being VERY compliant with bandaging, exercising, MLD, and have the Lebed video coming next week. Am returning CCL2 Juzo custom sleeve and glove, and still seeking something that will work after another 2 weeks of this therapy. I will post on the All things gloves & sleeves thread for suggestions again. They are a VERY patient group over there!
Anyway, back to GMA, are you able to wear any of those light crocheted type or lace type sweaters/cardigans that are very loose and made to go over camis and sleeveless tops? During my beach time, I did use one, which actually looked pretty spiffy. Didn't really hide the glove, but at least the sleeve was camouflaged. You could try getting some pretty patterned sleeves from Lymphedivas, get 2 of them and wear one on each arm, use short-sleeve shirts, so you look matching??0 -
Hello everyone
I have not been on this thread for a while
Yes everything has been under control with my stage 0 Trunkel LE.
Doin what I'm supposed to do until 3 niters ago I got bit by a tiny bug.I did not feel it right away but when I went to my apt.I started to get itchy and after I scratched it i saw the red lump.
I put on triple antibiotic cream and its still itchy like crazy.
I'm not scratching it and nothing else hurts but is there is anything else I can do besides the usual,drinking water,exercises and putting the cream on it.
I am scared to death that this little bite thats right about my thumb can cause me problems.
Any suggestions would be appreciated. I had my surgery in sept.2010.
Thank you
Your sista Grannydukes.0 -
Grannydukes, I think you are doing everything right. Hopefully it settles down soon.
Edit to add~chances are it will settle down. Just keep a close eye on it.
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Thank U Marple.
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Granny ...has it settled down yet or still itchy? Mustve been a nasty little bug. Don't know what the equivalent is in the US but when I get itchies (especially allergy types) that are stubborn and drive me crazy I use phenergen. It pretty much settles a rank itch, as sometimes the creams/ointments just don't cut the mustard. Makes you sleepy but anything is worth it if youre going to lessen the risk of cellulitis.
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Hi Musical
It's not itchy anymore,but its red and it hurts.
And the red has a small thin line about 2inches long that hurts too.
I took a Benadryl last nite cause my body was itchy too
I'm allergic to most creams and oils.I have a special anti itch cream that helped
I'm still so scared of this bugger.
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Oh Granny I dont like the sound of that redness! How long has it been red?... is the redness growing? please get to GP ASAP if that redness is increasing. Dont wait. Soreness and redness is indicative of cellulitis. Please keep us posted! Hope it's not ugly cellulitis.
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Also....you look like you've been "around " about as long as me so you'll probably be only too aware of how ugly cellulitis can get. Just in case youre not, if it is cellulitis the sooner you get antibiotics into you the better. If you catch it early enough oral antibiots suffice but if you don't, it's IV antibiots. (UGH) It is a potentially life threatening issue.
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Granny, Musical is right!! I don't like the sound of red line from bite! If it gets any larger in the next couple of hours GET TO THE ER!!!! At least call your doc!!! Call now rather than wait til late on a Sunday night.
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Thanks everyone
It's actually better.the red line is gone only the bite is still there and it doesn't itch at all anymore.im watching it very close and if it changes even the slightest bit I'm off to the dr.I am still using the triple antibiotic cream.
Thanks for all your help.
I will keep you posted.0 -
Granny, thanks for the update. Aren't we all just a bunch of worry-warts? Really it's just because we care. Sleep well tonight.
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This little bugger really scared the pants off me.
It's fine today...it's just still there and a drop still red.
I guess the long sleeve shirt is not enuf...
What next? Gloves.lol.
Again thanks for all the help and love
Xo grannydukes0 -
Good news to hear GD.
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Hello I am new to this forum, but am on a couple of others. I finished chemo last month and had my tissue expander put in last Thursday. Should my doctor be sending me to someone to talk about LE? I haven't had any issues.....however this is all new to me too. I usually fly about once a year and am very concerned now after reading your posts on the current page. I thought this was something that could happen, but not something I need to take preventative measures for.
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Hi everyone I am new to this thread some friends from another thread thought you all could help me. I am so frustrated ugh got over the one breast thing but this is driving me F- nuts!!!
I am currently going through radiation had my right mastectomy in June everything was going well until about a week or two. I developed a seroma after two weeks into radiation. The seroma is located towards my right lateral side underneath my armpit near my incision. Then I have noticed my that the back of my right arm is starting to swell. Is it lymphedema or is it from the radiation?? I am so frustrated I don't want this to get worse. Talked with my RO and he said we will keep track but I want help now, he said he didn't want them massaging where they are treating... Please help any words of advice?
Thank u,
Stacey0 -
Granny so pleased it has eased!
Teresa and Stacy welcome!
Teresa, anyone who has had nodes out is at risk for the rest of their lives to get LE. That is the plain bare facts and not opinion. That said, we can be free of it for years then BAM...something we've overlooked or inadvertently done has suddenly set it off. On the good side, I think more people don't get it than do. Still, why play Russian roulette. In other words we need to be pro-active about LE. ie heres some but theres many more....
- watch for ANY signs of swelling aching burning heaviness and find a qualified LEist ASAP
- Learn about cellulitis something that none of us can afford to be complacent about
- Keep well hydrated
- Keep antibiotic cream handy for any bites nicks cuts etc
- Dont overwork our arms
- No more blood draws, or other sticks in the arm or BP's taken
- Have a base line measurement BEFORE any surgery (if you are fortunate enough to know about this before the fact UGH I wasnt)
I am dismayed at how many people are not educated about LE let alone get baseline measurements
Others hopefully will chime in on the garments as a preventative as Im not conversant in this area. I already have LE. If I was flying I would get measured for a garment. OTS garments are a risk to the newbie and ill fitting sleeves can cause more harm than good.
Hope this helps!0
