GRRRRRRRRR I HATE LE..........
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Hugs4u....truly not bragging. I took to wrapping like a duck to water (no pun intended)....from day 1 I was a pro. It ended there. When I needed the "easy" way to keep my sanity, and the neighbors from complete peril when I was wrapping......I lost out. I have "batwings" as my grandchildren lovingly call them, not an arm that is easy to measure. Well they never got it right. Either to tight, to long, to short. It was beyond crazy, so I did give up. Went to a different therapist, not cause the first one wasn't good, mainly because the hours were more convenient. Also very good,but she had to begin from square 1 again..more co-pays, and a repeat of the past 2 months.....got disheartened, and gave in to my annoyances........actually got more frustrated since the new person had me go back to wrapping, using foam forms, that she conjured up.....thought......I'm outta here, ...........that is my story, and I'm sticking to it. Lol. Hugs, you have a great day.
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I was told something by my fitter and wanted to run it past you all and if you know of any links studying this...
I was telling her how my good arm was swollen and none of my doctors know why after multiple tests.. She saw my shoulder surgery scars and said with her experiences with others, she found the main portion of men that come for fitting are usually ones that have had shoulder surgery.. The surgeon could have nicked a few nodes.. which when, in the beginning, we were moving fluid to that side, overtaxed that side and caused the swelliing...
What do you all think??? My LEist and I are trying to see if there were any studies done on this.
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Rap on ducky, rap on !
Imagine how second nature it might become to someone so good at it - just thought, ducky !They sent someone in to do my husbands ileostomy bag when he first got on ( now reversed) He did it better than she so we never had her back.
Hey, if thats your talent- go for it !
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I agree with your LE PT but I don't think there have been any studies yet. I know I can only do MLD on my arm and one leg for that same reason. If we do both legs we may over tax the system and cause the fluid to build up in the wrong area or to back flow back in the other leg.
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My ' good arm' has been feeling achey for 3 days GMA, and it is freaking me out.
My cardiac dr said perhaps mine is systemic. (oh joy!! :>)
I dunno' . I dont feel I have orverused it and I have not had LE long enough to have overtaxed with MLD so it is a little scary.
ALSO- supposedly I have lipedema. Who knows ?
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My arm is very achey today but the weather went from 2 degrees yesterday morning to 45 degrees today. Wish Little Martha (LE arm) wasn't so persnickerty. I'm thinking of pulling out the Flexitouch if this achiness does not go away.
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Ohio, Just tell little Martha to get a life...sheesh...I hate this....one day good 2 days bad yadda, yadda, Wish LE would just stablize so we could get on with our lives. A double grrrrr just for you!
Ps. I am in a good phase today but as Ashley said : "Tommorrow is another day." You never know what LE will dish up.0 -
Had a chat with Little Martha - she said she would behave. Gonna treat her to MLD.
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Okay purple, I had to look up lipedema. It said it is mostly in the legs, but can also be in the arms, and the women who have it have a hormonal imbalance, and it is excess fat cells that build up. I don't think it is related to breast cancer at all. I don't know it seems like if this came on right after breast cancer treatment that it is Lymphedema. Hey, what do I know.
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'It said it is mostly in the legs, but can also be in the arms...'
Yes, I've looked up the lipedema ( against advice !) The pics are not pretty.
I was told it must be something I *already* had prior to BC. The funny thing is I always had such skinny legs ppl made fun of me! They are still thin.Even so, 2 therapists have told me I have it.
If not for the fact that my ring no longer fits they would suspect I dont have LE at all, but just the lipedema ! I've lost 22 lbs - my wedding ring should fit. That swelling began after LX.
In any case, there is other swelling is in my wrist where their is what I call a slight ' hump'. Its been there a few yrs ( before BC) the say that is the lipedema.
After researching (against advice !) I see this can be lipo-lymphedema. in other words, I believe the theory is that I *had* lipedema and didnt know it (DOH!) and then after my LX, I got LE - perhaps was pre-disposed to it. I have very poor circ and extremely low BP and always have.
Its all quite confusing because I am not fat . The articles mostly look like it impacts obese ppl., but I guess it is more like fatty deposits.
I tend to go overboard looking this kind of thing up ( notice ?!) but I really havent done so much with the lipedema. I think there is only so much of this crap I can handle at one time.
I'm already on overload when I stop to think I have not really had any BC tx perse'.
ugh
edited to add: That hormonal imbalance may well be related to BC though !
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Purple, I think we have a lot in common as far as the looking up things we shouldn't. I think I was predisposed to LE. I am not as thin as you, but I am definitely normal weight. My BS told me I wouldn't get LE because I wasn't overweight. Well she was wrong. I wonder if there is anything to the low blood pressure being a risk factor. I have low blood pressure as well. My sister's legs are always swollen from the knees down. She was never given any kind of diagnosis, just told to elevate them as much as possible and wear those off the counter compression stockings. I think it does help her some. I was wondering if she had lymphedema even though she never had any kind of cancer treatment. Now I am wondering if she has lipedema. In any case I guess the diagnosis is not as important as proper treatment. I think you are in good hands and getting good advice? I know it's all a bit of a crap shoot. What works for one, doesn't necessarily work for another.
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Purple and Kay - Isn't it amazing once you are "aware" of something - more questions arise? I am so aware at this point my LEist want to have me go to my doctors and train them in what to look for with the LE.. I told him I have already made them all cranky with me, but on the other hand - all the crap I've been going through lately, I have trained the doctor's staff on how to take a BP in the leg - because I refuse to have anyone close to my arms. One baby step at a time I guess.
Update on me - 1)My voice is a little better - but still can't use it or will get worse.. went to a Apnea Support Group and they are going to try to help me get an actual sleep study done. costs in the $2000 range. They will give me names of who to contact anyway. 2) I have my new Amoena compression bra and my LEist (on his lunch break- no cost) helped me make some pads to go under the arm where my swelling seems to be. He doesn't want me to be charged for anything, that is why he consults with me on his lunch
- I am setting it all up so when this breathing issue is over I will start walking yet again...0 -
Now I am wondering if she has lipedema. In any case I guess the diagnosis is not as important as proper treatment.
Right, Kay!
And compression stockingw would be correct for lipedema.
Yes, my cardio dr says the low BP= low circulation and of course we know how the circulatory system and lymphatic system are related.I have been offered florinef ( Nope and now NO NO NO with LE) and Midodrine ( no thanks ) for the low BP.
The salt loading worked , but it has stopped dead since my hand swelled.
I dunno'.
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went to a Apnea Support Group and they are going to try to help me get an actual sleep study done. costs in the $2000 range
This is great news, gma!
I sooooooo hope you can get the sleep study done for free.Your dr is very kind.
My husband had apnea. Funny thing is , when he went on chemo he lost over 40 lbs ( was normal med weight) and he stopped snoring and the apnea stopped. He has long since gained the weight back , but the apnea seems to be history! Go figure.
Good thing - He never did get used to his cpap.
People with copd often need to use a BIpap ...cpap plus oxygen ( what fun!
)You have been thru so much. Pls stay with the support.
Have you seen this ? http://www.apneasupport.org/free-sleep-study-for-those-with-limited-resources-t238.html
It has a page for extenuating circumstances.
You might just want to apply!
Good Luck to you.0 -
gmafoley, what a great LE therapist you have! It's really gratifying to hear of one human being going out of his way to help another. I'm so glad you shared that information with us.
Low blood pressure: I have it too, although not to the point of needing meds or treatment; I just don't succeed at giving blood without passing out, and after my bmx/recon, there were some err..exciting moments with my low BP. But somehow I never connected it to the LE I was not supposed to get. Someday I'll do some Googling and PubMed surfing to see if there's been anything published on an evidence-based connection.
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I questioned Lipedema but was told no my ankles were much too small compared to my legs and some other reason. I had some shock last week. I was at my moms and looking at old pictures of my girl. In them I found one of those lovely shots my DH took...can't take pictures and my legs were in it. I was quite shocked when I blew it up and looked at it. My right leg was huge then and the left was normal. That picture was taken 5 years before I was DX was cancer. So I think I have had it in my legs for a long time un DX. I also noticed my arm...yep my swell spot on my forearm was the same then too. I do think the top of the arm was from treatment. Why did it go that long with nobody noticing it. It made me mad and I paid for it. I did a week of denial and didn't wear my compression. Then I wondered what set it off...One of my many falls in the yard, the wreck I was in. I guess we will never know.
The goodnews...I got released today from my Radiation Oncologist.
Now somebody tell this weather to make up it's mind. Five days ago it didn't get above 38 degrees..today 78 tomorrow 82. Oh the aches and pains I have had today. New garments are in and I get them Thursday. That should help the swelling! Off to bed to do my MLD. Passing the brownies.
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That picture was taken 5 years before I was DX was cancer. So I think I have had it in my legs for a long time un DX. I also noticed my arm...yep my swell spot on my forearm was the same then too...
KITTYDOG
Could be lipedema. Probably is?! I had never even heard of it before.I keep looking at old pics too. My wrist has had that bit of a little hump at least 2 yrs prior. They claim that is lipedema. I would not even believe i had LE if not for my ring size changing after LX. Too coincedental. I am now 22 lbs thinner and the wedding ring still does not want to go on. I guess the lipedema sounds more believable somehow...but for the ring and truncal breast. I have had major injuries/ breaks on my left side and to my left arm and of course the BC was on the left too.
As for my legs, they say it is there too. the lipedema.
I will take a pic sometime ( PM me if you want ) I still have thin legs and very small ankles. we are NOT all alike! My ring size was a 4 1/4 . I mean just until a few mos ago. Avg is 6.
They say it is genetic. My mom had ' thick legs' and used to complain of swelling. Drs told her to lose weight. At that time, many yrs ago, people called me birdlegs !
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Can LE just have a "rug burn" feeling? For 2 days now my elbow feels like I got a rug burn - but no falls or hitting it and a very light pink but no real signs other than the pain...
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The pain I get is a burning pain so maybe your rug burn feeling is LE.
Mine is LE. Lipedema does not go down with wrapping...I think. I had great sucess in being wrapped. Lost 5 inches in the thigh and 4 in the calf with being wrapped 4 days.
Purple...I still think Dr.'s and Health care know too little about LE and just don't want to admit it is a problem. You honestly don't sound like Lipedema.
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KittyDog - should I be wearing my sleeve then??
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I would wear it if I am hurting. I am the worst about not wearing it long but I do try to wear it at least 7 hours a day. I also sleep in my tribute most nights. Last night I didn't had some red lines that kept coming and going so I watched it and skipped MLD just encase. The dog did get me in the arm yesterday. Today it looked fine.
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Purple...I still think Dr.'s and Health care know too little about LE and just don't want to admit it is a problem.
Yep.Can't argue with that!
WTH knows ? (nobody)
I will ask my LEist re: wrapping when I see her.0 -
Wanted to share a weird observation... I had a TH-BSO yesterday and had a foot IV...they pumped me full of fluids and I had really bad dry mouth from the anesthetic so drank a lot of water.
When I got to my hotel after being released I took off the sleeves and my arms looked great! They were so skinny and nonpuffy, even my trunc was good! Apparently hydration is a huge key to success for my LE...
I also wore my 'hospital' sleeve from lymph-divas and no one even questioned using my arms
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wow, good solution, bet you will be drinking tons of water!
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Apparently hydration is a huge key to success for my LE...
Wow !
Even after being pumped with IV fluids ?0 -
Thanks for that info Michelle. I am going to see if it helps me too.
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I went to my family doctor yesterday for my annual physical, he has a new nurse and I forgot to take my auto bp cuff with me. When I told the nurse that she would have to take my bp on the leg, she said I am not sure how to take it there, I may have the dr show me how when he comes in. I spoke up and said I can tell you how to take it. She was very receptive to me instructing her with the manual cuff, and I had a good reading. I guess it was because I didn't have to fight to get them to take it on my leg. Now just to work with the lab tech, she refuses to take blood from my foot, but will draw blood from the arm without a tourniquet. And when I showed the dr the swelling in my hand despite wearing my gauntlet and requested a new referral to the LE clinic he didn't hesitate to put that request in, it has been too long since I have been seen at the clinic and they said I would need a new referral to come in. I am now waiting for the call from the clinic for my appointment.
Sheila
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Ok, confusion a bit - is the tourniquet the problem with no IVs? or is it the needle??? or both?? I know when the doc sees me this morning that is going to be a topic. I want mine drawn out of the foot and need a doc order???
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my auto bp cuff...
What is that ?
How can you ( we ?) teach them how to take it at the leg ?
Please help us understand more of this process.THX!
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Hello my LE friends just popping in to "see" how you all are. I am plugging along. The LE in the left arm is awful...oh well...I just do not do MLD enough. Always too busy to stop and do it. Have 2 new Juzo dream sleeves...a blue and a beige one...wow they feel tight...guess my old ones were quite stretched out.
Gma--I think the no iv thing also has to do with cellulitis prevention but I am sure our more knowledgeable ladies will come along.
so for now GRRRRRRR to le and take care
Maggie
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