GRRRRRRRRR I HATE LE..........
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oh my goodness, gma. Hope you're a littl, or a lot, better today.
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Getting nasty thinking of starting antibiotics - The doc gave me the antibiotics and left it up to me (GRRR) on when I needed to start them. - what do you all think? It's not a bright red in the outer ring - so maybe I'm ok??? The little one has spread out of the circle just this morning.
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Did the Dr. give you any guidelines, like, if the bites get harder, you start running a fever, the spots start to itch or anything like that? If not I would call my LEPT to see if she has any info that will help you make an informed decision.
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She said if it got a brighter red around the middle spot. If it is a lighter red it is an histamine response. Bright and dark red is infection. I looked at her online notes... nothing except "spider bites" and discussed cellulitis.. Wonderful notes dang..... :P
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GMA, I'm so sorry! Here's information from StepUp-SpeakOut:
The most common form of lymphedema-related infection is cellulitis. Here are some signs of cellulitis to keep in mind:
- Warmth or tenderness when you touch your skin
- Fever
- Chills or general achiness
- Pain
- Itching
- New or sudden swelling
- Solid or splotchy areas of redness, or streaky red lines
- Rash
Hope some of that helps! Are you taking your temp at regular intervals? You can have early cellulitis without a fever, but if you do have a fever it'd be an objective way to know it's time to start the antibiotics. What a hard call to make by yourself--yikes!
Get better quick--and for sure don't be eating curds and whey on any more tuffets! Please do keep us posted.
Gentle hugs,
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Cool thank you Binney - I haven't been taking my temp.. Forgot about that one.
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Gma: how are you doing today? Histamine response? Did they tell you to take antihistamines? Maybe they did and I missed that post. Please let us know how are you doing.
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Gma: How are you doing? I've had the lines on me twice now, been in the hospital once and had the oral antibiotic option once. The oral antibiotic option is much nicer. Once you've gone outside the lines, follow dr's orders. I say that and I really hate antibiotics. Really. I think about how many I've taken growing up and how we're all getting resistant to everything, blah blah blah. But I don't think cellulitis is anything to mess with. Build up your immune system with other stuff in the future so you don't have to do the antibiotics, that's the way I try to think about it, and take a probiotic with them to keep your tummy and other parts happy.
GRRRRRRRRR I HATE LE......
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I Have no fever, the bite itself seems to be flatter but the rash looks a bit redder today. I am thinking if I can't get the redness down I will start antibiotics tonight - it has been 5 days now.
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Me too!
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A bit of an informal poll, if folks are up for it: did your doctor/therapist give you a specific sodium level to stay under? The treatment center where I go recommends no more than 1000 mg per day. When considering RDA is 2300 and renal/hypertensive patients are placed on 1500 mg/day, this seems very low. I have also not been able to find any current recommendations online that match this.
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1step - No one ever discussed sodium with me, but I'll be interested in the answers.
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1step - they told me to "watch" my sodium but never told me a level. Only don't eat processed food.
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@1step my docs don't take responsibility for my LE they blame each other, so no I don't get info from them. BUT my LEPT told me I should cut down on my sodium as much as possible and drink more water. My LEPT has LE so I think she is more realistic about what I should do and what I'm going to do.
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No one ever said a word to me about sodium levels. Or anything else to do with food, as a matter of fact....
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No mention of sodium restrictions from any of my docs
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Hi all,
I haven't been on the boards for a bit, but a cautionary tale...
have had mild lymphoedema in my dominant left arm since bi lat. mast in 2002.
Those who live with it, know that mild is enough to impact your everday life, work, etc.but can be managed with sleeve, elevation, exercise etc.
So, after all these years, I've now been dx'ed with it in the right arm as well.
It came about through a new program my company introduced for data entry of patients.
It meant a LOT more typing...they did the whole injury management setup or me, which did help my aching heavy left arm, but developing slowly over several months....yep..my other arm succumbed.
I originally had complete axilla removal from both arms but not one days trouble from right arm until now.
I hd tried to obtain an exemption from the new program, but was told it was now 'inherent' to my nursing job. (oh good grief!!!!)
So now, my GP has ordered me to cease work immediately, as the arm shows no improvement after 3 weeks not doing the program, and i have applied for Work Cover. (australian insurance thing)
Not sure I could have done anything more, as the right arm thing crept up on me, while I was busy managing the left.
Please don't let this happen to you. be careful.
it can happen after many years.
God bless,
http://www.lipedema-simplified.org/downloads/Cutting%20edge%20developments%20in%20lymphedema%20treatment%20and%20researchBritish%20expert%20Dr.%20Peter%20Mortimer%20speaks%20out.pdf
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I was not told anything about sodium levels or anything about food in general. That 1000 mg does seem rather low to me also. A person NEEDS some sodium. If renal patients are told to have 1500 mg, I do not think I would go under that. Wonder if LymphedemaMavens has an answer.
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LE is sneaky, Astrid. We have had others tell us that 20 years later they developed it. Sucks that we will always be at risk for it. Best of luck to you for having to now deal with 2 arms. ((hugs))
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Adults who need to lower their blood pressure should eat less than 2,400 milligrams of sodium a day. Under 1,500 mg is even better to lower blood pressure. A teaspoon of salt has about 2,300 mg.
That quote is from WebMD. I'm really curious about the sodium question now.
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http://healthyheartsnutrition.com/2012/04/lymphedema-nutrition/
This link also shows the same numbers.
1step: I would be really curious about that 1000 mg level. Can you ask what their source is?
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Hi, I am new to this topic. I needed to read about it because I am in fear of lymphoedema. A month ago I had a right mastectomy due IDC and since then I have been trying not to handle things over 15 pounds, being careful, not scratching, etc. But I was raised as a right-handed person, and right hand needs to take over. I cannot lift anything with the left one. The last thing that happened to me was I fell and fractured my right ankle (that was on Wednesday this week). The persons who helped me lifted my arms, especially the right one. The inflammation around the wound and the lymph node biopsy came back as well. The whole area (torso, arms, shoulders, abdominal muscles) hurts and I don't know if I have to tell the surgeon. This was before I received the clearance for the TE op. Everything is on hold now, radiotherapy, TE, reconstruction. I am trying not to get depressed but there are times I feel like exploding at the unfairness of all. I wear a ring in my right hand to check when it is swelling. What can you tell me? I still have a secular job and if I develop LE, I won't be able to do it. Some one told me that medicare does not cover LE-related costs.
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I was reading the analogy of God in a rocking chair and it reminded me of my dad. He used to rock me as a little child when I had an asthma attack. Yes, that is a good image of God. Thanks.
As for gma, if I were in her place, I would have taken the antibiotics since the beginning. The redness was expanding and insect bites can cause cellulitis.
well, good night, all.
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Mariangel - I am allergic to most antibiotics so I have to be cautious but be totally aware - I only have one type of antibiotic that won't kill me. I do have the antibiotic on hand. I also was told that if you use a certain antibiotic such as a z-pak - it won't be effective again for at least 6 months. And being I only have one type to use, I have to wait till the last minute. Of course that puts alot of stress on me to be vigilant.. That being said I watched for cellulitis signs that never came (a sigh of relief). I still have the redness and will have them checked out by my LE therapist at church this morning. - (BTW - when they started growing, she said to start the antibiotics) I was lucky.. I won't do that again. Next time I will just take them when the ring goes out of the circle.
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I've been polling over on Inspire too, along with googling for research on diet, sodium levels and LE, and everything seems to point to 1500-2300 mg. Someone from a different site (not bc or LE related) posted a link to research that suggested that low sodium can be harmful for people who exercise. I will definitely be asking them to provide me with a reason for such a low number
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@GMAFoley good to know your improving without the antibiotics, it was smart to wait. I went almost 20 years without taking antibiotics because I would prefer to avoid over use which can lead to resistance. The threat of Cellulitis has altered my view somewhat. I wonder can antibiotics prevent an infection or are they only effective if there is infection present? I'm going to ask my Doc next time I'm there, because that's important info to have now that I have LE.
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@gma I am so glad that you're improving! I didn't know you were so limited in your antibiotics. That stinks. I hate LE.
I woke up with my hand as huge as a house today. I can bet you its salt. W/e I go home, the drive, my bf's salt fetish, doing too much... Luckily tonight I'm cooking and it's salad. I just won't eat for a few days. Fasting seems to be great for LE. I drive home tomorrow, will be wrapping shortly. So sick of this
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hi ladies! I have a question. My right arm has LE (mild). For the past week, I have had pain in the upper part of my arm to my shoulder. It does not feel like the normal ache of LE. I cannot remember doing anything that might have ticked off my LE 😉 I am stage 4 NED, but the only reason I am stage 4 is because the BC traveled after 10 years from my left side to my right armpit. Had tumor removed, hence the LE. So, now the question. Time for a bone scan? Or could it just be LE? Thanks. Karenmarie.
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susansnowflake - yes they are only good if you have an infection. It stays in your system so it can be preventative. But doctor told me that she gave me the "big guns" and not to use them unless the cellulitis started.
Frill - the drives do it to me. I have hubby drive when I can and have my arms elevated on pillows to stop the swell. But salt without enough water to wash it through will cause swell.
KarenMarie - I haven't been in your position yet so my thoughts might be way off. I would talk to the doctor and check things out - Make an informed decision by asking. I would rather be safe that sorry.
Still not caught up after traveling around this week end but here is a peek-a-boo for you all This little guy was tweeting at me at a rest stop:
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Estepp At the beginning of your post I thought it was one of mine....doing everything right, nothing helps, I feel your pain. MLD, blah blah blah.... I still have a paw today and I'm set to drive myself 4-5 hours today, and God willing I will have the (almost literal) intestinal fortitude to drive back this weekend after chemo. I won't have driven myself so soon after FAC, but it will be the last, and I'm dying to come home for a break. Lol by then I may not have a paw but a .... dragon paw?
But....has anyone picked up the LE book that's been running around Instagram? Some women are having success with the diet.
I'm so tired, I don't know how I'm going to make it back but I better start with my attitude and the Ritalin that's supposed to fix my "cancer fatigue." I have a dr appointment at 745am tomorrow, so I can't put it off.
As far as hydration goes, do you all count sparkling/mineral water as water for LE? I was so good about water, but it wasn't doing any good one way or another either for LE, so I majorly stopped. Still, I know *I* feel better when I'm drinking a gallon a day, and maybe it doesn't all have to be LE all the time. I started really liking mineral water, it's almost like a coke, since I gave those up with the DX. Just curious to see what y'all thi
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