GRRRRRRRRR I HATE LE..........
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awww ducky,sorry to find u here
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I agree Ducky, bullshit!! I got out of the hospital two weeks ago for another bout of cellulitis in my affected breast. I also had a rash on my back which they finally determined (after I was released) was shingles.(I'm 51). I think they believe the shingles caused the cellulitis, but there's no way to tell. Of course I had the punch biopsies and ultrasound to rule out inflammatory BC which looks just like cellulitis. I'm so sick of this. One Dr. said some people with recurring cellulitis have mastectomies to prevent sepsis. Sometimes I wish I had just had them both cut off when I was diagnosed. Not that that guarantees I wouldn't still have LE. Last fall I ordered a swell spot for my breast. What A Joke. It was so bulky I couldn't even wear it under a compression tank. useless. I go back to the Dr. on the 28th. It'll be interesting to see what she comes up with for a plan to deal with this. I guess I keep hoping to feel "normal" again and am realizing that that's totally unrealistic!
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Hey grannydukes
I remember you! Thanks. They claim it's not a rash at all, but a symptom of flushing. Yes, do let me know if you 'hear of anything' . I appreciate it.
DUCKY
So sorry to hear of your 'misfit sleeves' ! It does sound very frustrating to say the least.. hang in there.
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hi purple
Can u tell me a little about what u call flushing?
Never heard of that one
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i flushed when I was on steroids during chemo, face and chest mostly, were really bright red, it did look a lot like purples pictures. Sobis something making you flush??? Is that what they're looking for? I also look like that when I get hot flashes/flushes sometimes lasts for several hours, or more.
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The flushing is chronic...lasted pretty much all summer last yr /'seemed' to begin with pool exercie and "seemed " to be exacerbated by any exercise - until I stopped all. SEEMS photo sensitive, but cant be sure as I am on anti B's too. It's chronic but flares at certain times. Cant be sure of the rhyme or reason despite keeping copious notes. In mu case, it is always accompanied by cold feet! They think it is vasol\dilation ( in chest) and I have pre existing low BP and P.O.T.S. so vasodilating makes me dizzy and very faintish when I stand. It's complex!
They look for things like carcinoid syndrome , mastocytosis etc etc ... nothing good :>)
My hot flashes were done 15 yrs ago- when I was 41...enjoy :>(0 -
Purple...did you ever question a reaction to Eucrin. I don't remember. I am allergic to there products...we think lanolin but don't really know. Hope he figures it out. Glad there are still Dr.'s that listen to you.
I came for a GRRRRR. I have done something to my knee. My Dr. is sending me to see an Orthopedic Dr. next Thursday. He gave me some pain pills because due to the lymphedema wrapping want work and braces aren't made for my big fat legs. He thinks I have something wrong with the meniscus and maybe to the point it is bone on bone. I was so hoping it was just a knee pain flair from walking so much last week on a field trip or even the arimidex. grrrrrr I am too busy to have a bad knee right now.
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Hi Linda
When I had the rash all over I was on steroids for a long time..u said u were flushing from the steroids
The first thing I got when I went to the hospital for that rash was benedryl and the steroids
I'm confused..and no I never had chemo either
And purple I no I don't have what u just wrote cause I don't have any of ur symptoms
I itch,then I scratch and then comes the big blotch.
There r pieces to the puzzle missing...hmmmmmmm
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LE sucks
Compression sucks
cellulitis sucks
dealing with this daily sucks
knowing that I will deal with this for life sucks
What does not suck is that I just had my 6 mo ck with my MO and she was exstatic over my blood test results. I am just 3 months shy of the 3 yr mark which is magical for a TN girl! Risk of recurrence is now negligible!!!
I am sorry to all the new ladies joining us swelly gals. I hope that you can find something that works for you and you find some relief. I have had mostly good days as of late but summer is here so who knows what the winds will blow in.
DUCKY...hugs to you and sorry for your continuing struggles.
xoxo-Maggie
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swelly girls! what a name! but hoping none of us swell!
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Good luck purple! In thought I was done with hot flashes long ago too, then along came aromatase inhibitors
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kittydog, last fall I found both knees were pretty much bone on bone, had steroid injections and the worked great, still basically no pain!
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I tell folks that the AL is the chance~~to do menopause a second time! I really freaked out a woman at my gym as she was in the midst of the menopause, she got creeped to think she would do it a second time, hopefully she will not!
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Thanks for the encouragment Linda. Today little pain..I hear some popping but has not done the stuff it was doing before. Hope it is settling back down. This is the same knee I injured 9 years ago this weekend. Back then it got ok with taking mobic but my Dr. said some day there would be knee surgery in the future. I am hoping the steroid shot will do.
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Glad there are still Dr.'s that listen to you.
They are getting harder and harder to come by KITTY! :>)
I am ok with eucerin! I have patellafemoral syndrome ( started Jan 19 2014 after a cpr class) so I am feeling your pain! Knee issues stick BIG time. Hope yours is an easy fix.Take Care
Laurie
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Ducky and FK, I am here, too!!!! Small world!
On the last page, someone was talking about using a Solaris Tribute night garment and I can't remember who or what the problem was and I am too lazy to go back a page, but I just wanted to share that I am using a Tribute most nights, but I had to send it back several times to get it fitted correctly. I got a new one this year, and they didn't get it right yet, but it does work pretty well once they get it properly fitted. I tried the ReadiWrap and found it really made my hand swelling worse, but that was over a year ago and I wasn't very good with "feeling" the "right compression" when I wrapped. I now occasionally use the Farrow wrap at night, which generally works pretty well, but I still have to use a glove with it and some hand padding, and there is usually an area that doesn't get 100% proper wrapping so there are more areas that get a little swelling that shouldn't be there by morning. But it is fast and easy, and I have the use of my hand at night, whereas with the Tribute I cannot really use the hand for much at all, kind of like having an oven mitt or pillow over my hand and arm.
Sending lots of hugs and well wishes for the rest of you with such a variety of aches, pains, rashes, infections, and just general miseries. Hope you have a good Memorial Day weekend.
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unfortunately Linda most of us end up here..
I have stage 0 LE and I take good care of it
Well most of the time
Ducky on the other hand has problems with the sleeves
I read somewhere that stage 0 is bad cause u kinda ignore it..I DONT,IN FACT I TAKE IT VERY SERIOUS...DOIN MY STRETCHES ON A DAILY BASIS
When was the last time I told u how much I hate this damn disease????
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Damn, damn, damn! I had a colonoscopy Tuesday, and the only place they could get a vein for my IV was in my right (unaffected) arm. (It was the place of last resort.) I have been meticulously cleaning it, and keeping antibiotic cream on it, but got my OT to measure today just to have a more recent comparison to the beginning of therapy, when she measured it just to have a comparison to the affected arm. It is 3 cm bigger today than the first day I went. I am going to have to be wrapped on both sides. I don't think it's just the IV that did it; I had some slight swelling last week after being outside in really hot weather, but we weren't calling it LE at that point. Looks like we are now.
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Aw, Paula, I'm so sorry! And right at the start of summer, too. :-( Sooo glad you and your therapist are on top of it so fast--you'll soon have it in control. You can do this!
Hang tough,
Binney0 -
Paula, stinks in my opinion but good that you and your therapist are on top of things, hope it deflates for you!
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I hate this damn disease
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aunt_paula, so sorry! Like others have said, you know about it now and have a good chance of getting it down. I have bilateral LE. The best thing I can say about it is that it sometimes looks like I am wearing a long-sleeved shirt or tattoos instead of compression. I am lucky to be able to wear Lymphedivas compression garments, usually tattoo style. I know how discouraging your news must feel, but I bet you will keep fighting your way through.
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Hum. I would be interested in how the hot weather played in the part of contracting LE. Perhaps the needle and weather combo was just a bit to much for you. Needles can be taken in the neck. As drastic as it sounds they say it i s not so bad.
I got sunburn and did intially swell at the bra shoulder strap area and arm but it went down. I was very proactive about it and I never did have swelling in that area before and have never had it at the shoulder since I went to MLD right away. I hope you can get it under control fast like I did. Try to stay hydrated in the sun and wear sunprotection. I love the sun but now repect it greatly. Hate this black sleeve/glove in the sun. Its gotta be the worst!
Do let us know what happens. Take care.
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I have had neck IVs several times. They must be inserted by a doc but they don't hurt nearly as much as foot IVs.
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I have LE in my neck, so I don't think neck IVs would work, but next time I am going to see if someone else can try (of course now that the swelling is definite, my arm wouldn't be the last resort anymore). My brother is a nurse, and said that if feet are not available, shins are usually a possibility. Does anyone have experience with that?
I think it had been brewing for a while and I was in denial about it. I kept thinking if I tried hard enough (or ignored enough) I could will it not to be LE. Then the hot weather hit, and I think it was a done deal. The good thing is that it is early; I'm not experiencing much discomfort with it at this point, so hopefully that will be a good thing as far as reining it in.
I am so glad to be able to talk about it here. My family listens well and is very supportive, but I feel like all they've dealt with with me in the past few months has been related to some medical issue or another, and I don't want to wear them out with it. Plus it is such a big help to hear from people who have been there/are there and really get what it means day to day. Thank you!
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I am happy to say the orthopedic Dr. did not feel like my knee was from an injury. He says from the ex-rays and what I said everything points to an arthritic knees. I know that is still not good but no surgery at this time. I got a cortisone shot and he thinks I should be on the mend in time for our Girl Scout trip. I have some extra swelling but I am going to stay in denial till after the trip. Then I will ask my Dr. to send me back to have them wrapped and possibly my arm too. The joys of the hot weather in the South.
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I think it had been brewing for a while and I was in denial about it. I kept thinking if I tried hard enough (or ignored enough) I could will it not to be LE
Aaaah, the land of denial. I love to rest there. I think we all do at times! So sorry reality had to slap you in the care Paula. It really stinks. Oh yes, you can ' talk about it here' all you want. Talk about it - 'until'.
Kitty, hope your trip to the land of denial AND G S outing works out and things go well after your trip too.
Take Care!
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LEG SWELLING COMPRESSION
Maybe not the place to put this, but BTW, while I was looking at bright life direct for more socks for my husband's leg swelling (Thanks Binney and MRI scheduled day afer tomorrow) I saw some very stylish looking socks that I can only say reminded me of" Lymphedivas for legs ! "
Nice name, ha Josh ? :>)
It is a new area of their website . Well, new to me anyhow.Check them out if you have leg swelling here : http://www.brightlifego.com/
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mammo today
(the new 3 D one to boot!) Keep me in your pockets please. VERY nervous due to the ' flushing' . ALMOST resolved, but very concerned the mammo will flare it .
Any tips (truncal LE) appreciated .
THX for always being there.
Laurie
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I have no advice Purple. Sorry. If the mammo flares it (heaven forbid) then maybe they can view things another way next time. Meanwhile, I'm in your pocket. Fingers crossed for a good mammo and no flushing. Hugs.
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