GRRRRRRRRR I HATE LE..........
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Oh, Joanne, I hate this do-it-yourself doctoring we have to do when no one knows what's going on. Hopefully your primary care will have some ideas, suggestions, and words of encouragement.
I like the massage and Lebed idea--that's a good way to get things functioning again, and it's gentle too. Hopefully if you can move some lymph fluid, the inflammation will lessen and healing will begin to take place.
I'm so sorry the ID visit was so disappointing, and it sure doesn't help that the LE therapist is clueless. But your instincts about this have been developed through conscientious self-care during lots of previous flares and problems. Trust yourself and go for it. And please do let us know how it's going.
GRRRRRRRRRRRRRRRRR!
Binney0 -
Jo - so sorry to hear about more incompetency. Isn't it interesting how they finally listen to our husbands (or in my case - my son) as if we didn't have a clue. I agree - why not at least do blood tests. Dr, Google at Mayo & John's Hopkins says a good idea. Hope your PCP will investigate a little further. You to NOT want to end up in the hospital on IV antibiotics.
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Jo- I'm so sorry! I have so much more I want to add but I'll have to do it later...I have a endometrial biopsy this morning! I'll be back!
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Hi Joanne,
I'm relatively new here, so I may have missed something, but if I had to wait until August, I'd probably try an anti-inflammatory cream, maybe in one little patch to start with. But perhaps you've had bad results with them in the past,
So sorry you're having to go through this!
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Joanne, if it's feeling irritated after massage maybe stick with just the Lebeds. No point drawing more lymph fluid to the site, which pain and irritation do. Do you have a night garment?
The anti-inflammatory diet came up a couple of years ago and has been championed by the folks at LymphNotes. They describe it as "A Mediterranean eating pattern high in whole grains, fresh fruits, leafy vegetables, fish, and olive oil." Fairly simple to try, so you could give it a go if you'd like. Some women swear by it, others not so much, so I suspect it's one of those "everybody's different" interventions. Let us know what you discover!
Hugs,
Binney0 -
What is Lebeds? I can't figure it out! Jo- I was going to say that I'm like you...I get dressed makeup and hair done! I'm not letting BC or LE take that away from me. My BC is still on the downlow. My parents don't even know nor does my contract office that I work with. I have managed to keep it quiet. Only a few close friends and a couple of pastors from my church are aware of my health issues. Now on for the new thing..... I'm allergic to anything in the WASP family. Honey bees have never been an issue. I got stung twice by 8 tiny small sweat bee on Monday. Hurt like the Dickens! Of course it was on my LE arm and chest. I was in the pool reached for afloat the B was on it got me in my armpit close to my scar when I flipped it off I flipped it right onto my chest and it got me there. I have welts there some swelling in my arm but nothing major. Today I have like an orange peel rash under my skin all over my body. I've never been sensitive to heat before we've been in the pool a lot could it be a heat rash? I would take a picture but I doubt you could see it. Next question is I decided needs to be looked at should I call my family doctor or my radiation oncologist that kind of manages my lymphedema? It's everywhere but my belly for some reason.
Edit to add I also have had a low-grade fever no higher than 99.7 the rash is a little itchy on the back of my neck but that might be because I have long hair and it's laying on it putting that stuff up today! Thinking the fever could be from the endometrial biopsy I had on Tuesday.
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Joanne, I'd hesitate to use a compression sleeve just yet. A gentle wrap would be better. That's why I asked about a night sleeve--it's an easier kind of compression and might be really comfortable as well. There are night sleeves that are not custom if you wanted to look into that.
Varga, definitely get that looked at right away, especially with the low-grade fever. Not something you want to mess with! Lebeds refers to an exercise routine that was develop by Sherry Lebed especially for helping control LE. It follows the pattern of the MLD massage routine and helps stimulate the lymph system. I personally find it more effective than my efforts at self-MLD, but like any treatment for a chronic condition it's hard to maintain over time and I constantly find myself having to renew my determination to do it daily. It's now called "Healthy Steps" and you can find more information here:
If you click on "Store" at the top of the page you can buy a DVD of the routine.
Please do let us know how you do with that rash! Hugs,
Binney0 -
I called my RO she's out of town and her nurse called me back to say come now. Thank goodness my DH was home to keep my girl. I'm in the waiting room now. Will up date when. I'm done.
THANK YOU BEAUTIFUL LADIES!
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The doctor has me on antibiotics for 10 days. The main thing that was making me concerned was my fore arm felt like it did in December when I had cellulitis. The only way I can describe the feeling is tender and a little sore like a bruise. My arm never really bothers me and is just a hair bigger than the non-LE side. My truncal LE has always been the problem. My arm is definitely swollen and my BP was 162/91. So glad I went. It's just so hard to know when to take action now. The little things are big things now!!
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Jo- the doctor prescribed Sulfamethoxazole-TMP DS (substituted forBactrim) I'm glad I went to bumpy rash in on my face a little now. I have always been sensitive to insect bites. The bite turns into a bright red welt that gets all crusty. Last year I didn't get one bite! This year I have had 1 bite and the current 2 stings. I got them all in the pool both times getting a pool float. I have got to reach for things with my left hand!! My LE is the dominant hand which makes it natural to reach for everything with it! I try to remember to pet my own cats with my left hand. (Especially Izzy he's moody...lol)
Thank you for posting the info about the videos. I'll be the first to admit I suck at MLD. Which is sad since my education is OT. I do an ok job but I know if I were left side effect the right hand would do a much better job. Exercise is always a better option for me. I prefer to be moving.
Jo- hope you get some answers with your PCP. What you said about the inflammation makes perfect sense to me!
Good night LE sisters!
Teresa
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Varga - glad you got on antibiotics.
Jo & Binney - thanks for all the time & sharing your knowledge.
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Varga, good for you! It is hard to know when to seek help, especially for idiot things like this that didn't used to be such a big deal. Have you seen the StepUp-SpeakOut page about cellulitis? It's here:
http://www.stepup-speakout.org/Emergencies_and_Med...
Joanne, glad you've connected with your PCP and hope all goes smoothly and in a timely manner tomorrow, because the weekend looms once again--sigh! Looking forward to hearing what he suggests.
Back to my Lebed! Especially important in the summer, when the heat makes LE all the more challenging.
Onward!
Binney0 -
Yay!!! A doc who actually seems to care & will make a decision.
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JO-5, did you get into the Infectious disease specialist yet?
Lyn
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Hey, Joanne! I like Dr. Jackson, and I don't even know him! You should tell him how many women are here cheering for him.
Hugs and hope,
Binney0 -
Jo- so glad your doctor got on it! My PCP is the same way!
My rash is gone on my legs and it is slowly leaving my arms. It's mind boggling how it literally is going away from my ankles up my body. Just like it started but in reverse. The only part that is itchy is the back of my neck and under my chin. I'm sure that's because of my hair. I didn't put it up today. Thanks for asking! Got a few errands to run! Have a restful Saturday!
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Joanne, the "elevate and rest" part might be just as important as the AB. Is that something you can do, or do you have to be up and about? Elevate! Rest! A good book or a funny movie, or just catch up on sleep. (And chocolate, of course, but maybe that's just me...)
Hugs!
Binney0 -
Jo- hope you are feeling better! The antibiotics are messing with me as well. I am normally sleep sound for 6-7 hours ever night. The last two nights I have slepted but it was restful. It is like my brain was in over drive and thoughts were running amok but I was still sleeping. It has been really weird. My stomach was a little upset but that could have been from the birthday cake. My DD planned a surprise birthday party for me yesterday. When I got home from Walmart my Veranda carport and breezeway we're all decorated for my birthday and my closest girlfriends and entire family was here. It was a beautiful day and very much a surprise so I had to eat the cake! I haven't had anything like that in months. And I don't think my tummy was happy about it
Now for a question about LE and cording. Do you pop your cords? Should I leave them alone while I have the infection? I get them frequently from my armpit to my elbow. DH has become a pro at popping them. Last night I was going to have him pop one and he was having to work extra hard and I was like well maybe that means we're not supposed to pop it. Have a beautiful Sunday! Think I'll hit the pool now
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Thank you Jo! I turned 53 last Friday and DD really surprised me! Guess there glad I'm still around. 4 of the 6 grandchildren were here so I was in heaven with them.
The cording feels like guitar strings...like a cord when you pop them they sound like those glow stick you break to activate. They do not hurt. They are just annoying. When I reach for anything I can't feel them pulling the opposite direction.
Sorry I can't help with you. I'm still learning! I already know more that I want to because I learned it the hard way!
edited to add that's the probiotic I take!
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Hello Estepp, I hope you are not in great pain, but Beth Izrael deaconess hospital in Boston does node replacement now in 2018 , so not sure if you fell better or not, but it’s pissible now. So sorry to hear you were in pain!!!!
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Bostonian - Estepp has not posted since 2013. But as you can see, this thread is fairly active. If you have LE, do join us.
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Good grief, Joanne! I'm sorry that the infection has been so unwilling to loose its hold on you.
Lyn
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Hi, I posted here in March/April. Double mastectomy in October. Left side cancer 3 nodes removed. All clear. Right side prophylactic. Reconstruction with implants. After chemo ended in January, and I started Arimidex, thought I had lymphedema that caused cellulitis. My breast was swelling and I had red streaks spreading over my node scar. I had LE therapy and was on 3 weeks of antibiotics, Keflex then 1200 mg per day of Clindamycin, and nothing changed. No fever, bloodwork perfect, but the redness and swelling remained. Breast MRI showed likely pleghmon (pus) in the breast. PS decided to remove the implant, clean the pocket and replace with a new implant. Instead of pus he found hematoma (blood) in the pocket. He referred me to an ID doc while I was in the hospital, and she kept me in the hospital three days on IV antibiotics (vancomycin and cefepime). She sent me home with a PICC line for 14 more days of self administered vancomycin and cefepime. Nothing removed during surgery ever grew bacteria, and I was off antibiotics for a full week before surgery trying to get the infection to show itself.
The cellulitis had faded to brown with only a small red streak when I finished IV antibiotics. ID doc had me continue oral antibiotics (doxycyline and cipro) for 15 days. At the end of the 15 days, the large brown area had faded, but the small red area was a little larger. That was this past Thursday. Called ID doc, and she extended doxycycline and changed the cipro to Augmentin. I'm pretty sure today the red is even more intense. Not necessarily spreading, just brighter. Also, after surgery 5 weeks ago, there was no fluid in my breast. Now it is swelling and feels like there is fluid again. Not as hard as the hematoma, but probably too firm for 5 weeks past surgery.
I will see the ID doc tomorrow. I'm really frustrated. I was just feeling good after chemo in March and ready to be normal again. Now my life has been on hold again since April. I may have to lose the implant. I have the exact same implant on the other side, but all nodes intact. I am still suspicious that LE is causing this. Not sure if there is a specialist I should see beyond the ID doc. I feel like I am in no man's land for finding a doctor who can figure this out.
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Orangedaisy - I'm so sorry you are having to go through this! I have said many times that the surgery to remove the BC and radiation were the easy part! It's the AFTER that has wrecked my world! The LE has changed my life so much! Have you been to the webite that the ladies on this thread recommend? Pretty sure it Step up Speak out. (Someone will post the link I hope) maybe there will be information that will help you there. It's very informative!
Hugs and prayers for you! Jo and I both are on antibiotics now. I got stung twice on the LE side while in the pool. I'm allergic to anything in the wasp family and broke out with a orange peel rash from my chin to my ankles. Its getting better. I go to the doctor today! Jo- hope you are feeling better! My stomach is still bloated! Damn antibiotics!
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Here's the web site - with thanks to all the ladies on this site who worked on it. REALLY valuable info.
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JO, I didn’t have radiation since nothing in nodes, and I had a masectomy. I’ve visited the LE site several times to research compression and give my Pilates instructor links for best/worst exercises. I did a little LE massage after my cellulitis looked almost healed, but will stop now that it looks a little red again.
Got blood work done today at ID office.They may send me for an ultrasound. I am pretty swollen over the breast. Feels like April all over again.
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Joanne, I’ve had blood work multiple times since all this started. Nothing is elevated except two weeks ago my CRP. It was about 4 and should be 1, which implies I have inflammation.
I’m sorry your ID doctor wasn’t helpful. I saw the NP today. The doctor got called away. She thanked me for keeping an eye on the redness. It wasn’t as bad as she thought it would be when I called, but agreed it needed attention. She said we are going to try to keep you from another surgery on this breast.
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I have a question for those of you that wear compression. I bought Wearease cami's. It was funny when my Oncologist wrote an order for compression garments, and I went to the medical store, they were selling Wearease, which I had already bought online. The XL seems too big, but it bugs me because it's so high under my arms. The large cuts into my underarms. The stitching on the underarms drives me mad. I also have Tommie Copper that are more comfortable, but less compression. Some of the ideas on the LE website are no longer available. Any other suggestions for breast compression / upper trunk compression?
Since I've had cellulitis for 3 months, and my breast is swelling again after my implant replacement, I thought I would try compression to see what happened. The ID NP thinks I have fluid that might need to be aspirated, but I wonder if it's LE? How do you tell the difference?
I've been on antibiotics for 3 months. Should I still avoid exercise because of the cellulitis. I never got back in the swing after chemo, and I really need to. My PS said do whatever I feel like doing. I keep forgetting to ask the ID folks. I'm not extremely overweight, but some. I know that contributes to all forms of edema.
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Joanne, I've never had problem taking antibiotics. They make me a little tired, but after 3 months, I'm not sure I remember anything different. During the two weeks of IV antibiotics, my stomach was a mess. It was just like during chemo. Diarrhea and painful gas.
My LE therapist said you could start compression after being on antibiotics for 48 hours if the cellulitis was clearing, but if I've still got it after 3 months, I don't think I qualify for that. It seems like a chicken and egg thing. The edema makes you more likely to get cellulitis, but you can't treat it while you have cellulitis.
I did wear heavy compression today for several hours even though it drove my underarms crazy. I don't think I am any more or less swollen or the redness is any worse. I mostly wear the Amoena Women's Frances Front-Closure Leisure Bra 24/7. It's soft cotton, but gives me some compression.
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