GRRRRRRRRR I HATE LE..........
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PITA is right- PAIN IN THE ARM! Icky, swollen, achy, crummy day today and feeling sorry for myself. Anyone want to have a pity party together......with lots of things containing chocolate?
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Kate - I will bring the chocolate - The only good thing that happened to me yesterday was going to my LE Therapist... After being nice and calm, I went home to BBQ burgers, which went well, until I went to go into the house and tripped over my own feet and fell.. Saved all but 3 burgers that hit the ground.. I scraped up my RIght, bad side, arm at the wrist and hurt my left foot and leg.. DD was here with my grandsons that got very worried because grandma was crying.. Not feeling to good this morning, but have to work both jobs today :P -- Pity party with chocolate sounds good... of to my computer work... see ya later.
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Lee7, when I took the CLT course, they said the the nodes didn't tolerate radiation well, although the collectors did. I would think that the safest and most effective path to redirect fluid is to the inguinal nodes on that side. Bring it down.
Although you'll start by clearing the neck, do a fair amount of work on the abdomen--it's right above the cysterna chyla, so do deep breaths and resist with your hand, and massage down to the cysterna chyla.
Then clear the good axilla, move fluid across the chest. Clear the inguinals on the impacted side, and open up the path between the axilla on the radiated/treated side and the inguinal, and when you work on your arm, bring it to the underside, and down to the inguinals.
Does that make sense?
Not all women who get rads to the supraclavs get LE. And there can be acute inflammation, and I used to see a lot of skin reaction on the back above the supraclavs, so be careful of moving across the back while it's inflammed.
Yes, the body does make collerateral pathways to take the fluid, and some women have additional collectors that bypass a lot of the standard axillary nodes.
Kira
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I am in for the pity party...I will bring my famous peanut butter balls- aka buckeyes for those in the midwest. I can also bring a good bottle of cabernet!
Maggie
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OK this should be good for a laugh.
I elevated my arm on the Greyhound bus...and fell asleep and ended up with it up in the air for an hour!
Yes I was in the front seat.
I have to wonder what that driver was thinking.
No it didn't help.
This is the week I try to be all about compression so I can go sleeveless to a party in the Hamptons, was doing really well with the channel foam, but now it's kind of puffy.
DONT FALL ASLEEP ON YOUR ELEVATED ARM FOR AN HOUR (IN PUBLIC)
It actually ended up pins and needles which I know is never a good sign.
Please tell me someone else sees the humor in this.
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Still having a pity party but it doesn't seem to help anything. Oh well. This heat is playing havoc with LE. Been wrapping my hand at night but it swells again so quickly. Forearm looks pretty good but upper arm has some swelling. Need to just take a deep breath (good for the lymph system) and get over it.
Big week - had my med port removed Monday and saw 4 doctors yesterday and today. RO said all looks good. BS like look of skin and port incision healing well. MO says labs look good and gives thumbs up. PS says MX (left) and recon will be three surgery process...... golly, gee. Didn't expect that.
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Cookie--I never know what is next from you!!! I am sure there would be a lot of laughs if anyone saw my jovipaked arm in the air at night. Looks like a beached whale. Oh well...
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Hi, hope you all don't mind me popping in... I got stung this afternoon on my thumb - same side as Mx and 1 node removed. My whole hand and arm up to my elbow is horribly swollen. Someone said this could trigger LE? Is there any advise you all might have about this? Thanks!!!
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Stanzie - I am new here myself, but this one I have learned from others - Stay Calm.. Deep breathe.. but I would suggest its Time to go into ER and yes it could be trigger for LE BUT It might just be an allergy. Either way, I would say to go in. Here is a helpful link: http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm
Edit: Kira and Binney are the experts here though... I hope I helped some but hopefully they will be on soon to guide you further.
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hard to go to er as home with kids - also don't know if i could drive- too swollen to grip. hoping i can make it to morn. sorry typing with left hand
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Oh my, No neighbors that could take you? DId you try taking a benydrl to see if it was allergy?? I would say keep your arm elevated and drink lots of water. I PM'd both Binney and Kira, hopefully they could give you some suggestions. Please read over the step up/speak out link on lymphedema, I think that would be your best option and call you doctor's office and see if you could talk to someone there.
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Stanzie, I'm so sorry! You do need some help, pronto. At least do call any doctor on your team that has an on-call, and when you do, mention your lymphedema risk, since it presents an additional risk for cellulitis (a fast-spreading infection). If you decide not to act tonight, at least set your clock to check every hour or so. Redness, itching, more swelling, fever all indicate a need to get yourself to the ER. Neighbors to help? Friends? It's hard to ask for help, especially at night. But your kids need you to be well, and this is clearly a serious reaction.
Worried 'bout ya'! Gentle hugs,
Binney0 -
Binney 4 - thanks so much. Got scared because of LE so I did call my Doc. and got some steriods. Hope it helps. I saw the insect- I think it was a wasp. Anything in particular I should look for?
The swelling hurts so much. I know you all understand this - which I'm so sorry! I wish they could come up with a cure for LE and prevention. Thanks again!
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Stanzie, whew! Good for you! Do check out the link in GMAFoley's post above, about LE emergencies, as it lists what to look for. Do let us know how you're doing.
Be well!
Binney0 -
Thanks you for your concern. I went out last night and got a prescription for steriods.
The swelling has gone down slightly and it is itching like mad. But hopefullly will clear up. I'm not sure what the signs are for getting LE to tell the truth. Thanks again!
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Jo, it stinks that you have cellulitis again, and I know my ribs are always sore after rads--I'd think it's due to scar tissue and the cipro.
Heal fast!
Kira
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Jo - That rib issue is the same you described - That is one of the places the LE therapist made his decision on me having it. He gave me 2 jovipak circle pads one for over my scar (wear my nipple was) and one for that place where the ribs hurt... It seems to be helping... and I am wearing sports bras that are lose around the ribs but tight enough to compress, if that makes sense. So far, no issue with my arm since my fall thursday.. My foot hurts like a bugger though...
Stanzie - thanks for letting us know how you are... keep us updated please.
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JO-5, I am so bummed for you!
I believe you currently hold the record here for repeat cellulitis. What is WITH this "Summer of Cellulitis"?! Enough already!My truncal LE is debilitatingly painful when it's flaring. It's not bone pain, it's more like nerve pain. Feels deep sometimes, or at least pervasive. Tends to move around (sort of--hard to explain) so I sometimes can't even pinpoint exactly where it is, just the general area. If I try to put my finger on "the spot" that hurts...I don't know, I just can't, somehow. Which kept me from reporting it to anyone for a long time, because I thought it must be all in my head. Nothing OTC even touches the pain, which also made me think I must be making it up. When I finally told my LE therapist about it she was able to acknowledge it and that set my feet back on the ground.
Since I can't judge swelling in my trunk very well by eyeballing it, it's usually pain that first makes me aware it's flaring. Can't wear bras of any sort so I use camis. Swell spots help A LOT, but only for a while, and then I need to change to something else--either a Jovi chest pad or a chocolate bar (the foam kind, not the dark, edible variety--though that certainly helps too when taken internally
). I switch around with those, do a bit of extra focused chest MLD, and wait it out. I absolutely hate it because stuffing swell spots in my cami is NOT an attractive presentation. But then when it flares I don't feel much like "presenting" myself anyway. In fact, truncal flares make me both fatigued and a bit slow-witted (not that I'm normally nimble-witted anyway, but I get sorta mentally foggy).Weather is a big factor for me with truncal flares, but also overusing my arm. When I clipped one of the dogs a few weeks ago my fingers swelled from the scissors, but my chest just went crazy with the pain.
Sorry if that's more information than you even wanted!
I hope you get good answers and feel a whole lot better real soon!Gentle hugs,
BinneyEdited to add, if my compression sleeve is too tight at the top that also causes truncal pain. And I also wanted to say that for me there's a corresponding emotional component to a truncal flare, which makes me feel...well, humiliated or something. Like I failed somehow. Like a wreck. Fortunately MLD and a few switch-outs with swell spots and such will bring it back into control, but it still sinks my ship whenever it happens.
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(((Binney)))
Truncal LE sucks...the weather in AZ has been...varied...the last few weeks and my arms and trunc has been flaring...wore my swell spot in public on 4th of July I was hurting so bad! Today i am wearing my compresleeves during the day as I dont have the material to wrap and sleeves just are not working...my ship sinks too when flaring
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kira,
Thanks for the detailed instruction for moving out the fluid. Once I looked up some of the words, I got the picture. LOL.
Just reading everyones posts, I can see how LE can affect so many different areas and it can be different for everyone. I have finally started my LE therapy and after 2 appts, some of my arm has gone down a little. :)Yay! The therapist said she will teach me how to wrap my own arm and I'm excited for that. It sure seems like it takes a bit to be able to do your own arm but I hope I can get the hang of it quickly.
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Jo, I read daily but don't post often. Truncal pain under my breast along rib is what caused me to go for an LE eval. I thought my bra was too tight even though I had lost weight. When I considered it, I was too tight on just the surgery side. The rib pain was nowhere near the surgery site but that is where it hurt for months. Massage and stretching finally helped. I also developed a very small cord there (that i found) that was stretched and broken, providing much relief. Therapist had never seen breast cording but really worked hard to research and do proper technique to break it. There is a proper term for that, bu of course I can't think of it!
I sometimes also have rib pain where my bra hits under my arm along the lower band. I could not touch it and find a sore spot but when therapist would massage and manipulate I would know when she hit it and she would feel it soften after awhile, which would reduce the pain.
So I guess this is long answer to say, yes, what you describe. My Bellise bra helps the most for compression. Haven't got swell spots but we are considering that if these flare again.0 -
I am so sorry I am whining again... everyone else hits high high temps and here we are only at 92 - 85 in our unairconditioned house... How do I stay cool??? Here in Oregon, we don't get hot much...
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Stanzie, it sounds to me like you probably had an allergic reaction to that sting. After you're healed, don't ignore it! The thing about allergic reactions is that each exposure to the allergen causes a worse reaction. It would be a good idea for you to see an allergist after you're healed and get his/her opinion on further testing, treatment, etc. I've had severe allergic reactions to stings and they are DANGEROUS. As in - anaphalactic shock.
Leah
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Gma,
This helps me in FL...a cool shower, leave my hair wet, sit by a fan, and leave off the shoes & socks. Sometimes just a cool cloth around my neck helps too.
If you can get out and go to a mall or someplace with AC for awhile, that helps too.
I will say, FL is the pits for having LE because of the constant heat & humidity this time of year.
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Lee7 - it is more humid here than usual and between the hot flashes, heat, sore swollen foot and truncal LE - I am miserable... I am sure glad the grandsons went home today - I can just be grumpy and DH will just ignore me..
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Gma, put a couple damp towels in the freezer. You can alternate them. I put them around my neck, touch them to my face, and today, when my foob was sore and hot from overdoing, I used it on the foob. It's a big help. Plus cool showers -- except I get sweaty just getting dressed afterwards. Best to just be still and use ice packs and frozen towels.
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Thank you all so much. I would like to ask another question as I'm having some really very odd symptoms. My hands and arm is ultra sensitive and I mean really sensitive. When I was washing my face the water running over my hand almost made me pass out.
Then on my arm there is a very faint patch that has uneven edges and it is mottled inside and more than sensitive than my hand... Is any of this symptoms of Lymphodema. I just don't understand these symptoms and it feels worse tonight, so I'm confused.I can't sleep as I can't have anything touch my hand or arm.... Why do things always happen on the weekend-Arg.
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Never mind- unfortunantly I think I've figure it out - Shingles!!! Now I really want to cry!
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Stanzie--I feel miserable for you. Shingles? Are you sure? I would get all of that checked out asap. (((Hugs)))
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Stanzie - I am so sorry to hear you are suffering so bad! Praying for you..
Ladies - what do you think??? Should we start a board called: "Why do things always happen on the weekends or after hours?" We could make it a place to go when you don't know what to do?
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