GRRRRRRRRR I HATE LE..........
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Frill: I'm not on Instagram. Can you tell me the name of the book? Wondering about the diet. I think sparkling water should count for hydration, but just check the sodium content. Some are better than others on that. Lemon sparkling water is almost like having a soda. Nice to have a different taste, right? Will be thinking of you as you drive,,, YAY for the last one!
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Love the birdie pic, Gma!
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I second glennie. I will sometimes drink sparking water. I hate giving money to Nestle, but Perrier has no sodium. Pellegrino wasn't bad iirc, but if I know I'm going to be above my sodium limit, every little bit counts and Perrier it is
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Glennie: The book is Lymphedema and Lipedema Nutrition Guide - it also has information about balancing estrogen.
I've skimmed the whole thing on my phone. A lot of it we know....salt, salt, salt. I've just gotten the actual book. I'm too old to absorb too much complex material unless I have the paper in my hand. It has some tips on tracking to help pinpoint what might be the aggravating factor for the LE. Now I need to go back and read it for real, and work on trying to implement parts I'm not doing. The diet is pretty - well, it's not what I cooked for the kids all weekend - but it's not impossible sounding.
One thing- it's not just for BC LE women, although most of the info is relevant.
If anyone else gets it and wants to try it with me, let me know.
1step: Thank you for the Perrier info. Of course I've been drinking San Pelligrino.....glass bottles. (I just figured between the two) I'll have to find Perrier in glass. The book talks about reading labels. I need to be more diligent about sodium- sugar I'm great about.
I cant believe it....the hospital called on the way home and the ONE pt session insco approved June 30 finally wound its way through the system (I called them first week of July) and I have an assessment this week. Even better, it's on a day I'm already at the hospital. Stacked appts starting at 8am, but I'll be giving my pt a huge hug
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I'll look for it.
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Frill: I ordered it in paperback from Amazon. (I prefer paper books as opposed to Kindle) After I read it, maybe we can discuss it! Will be interested to show it to my LE therapist too.
glennie
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See this website: http://www.nytimes.com/2011/06/21/health/21lymph.h... and this one: http://prma-enhance.com/vascularized-lymph-node-tr... and this one: http://www.advancedreconstruction.com/lymphedema-t... As a nurse with severe lymphedema, I knew about lymph node replacement, so I plugged that phrase into my searchengine. There are many, many more sites to see as well. I don't have insurance, and I certainly cannot pay for this procedure, but all the other research I have done shows a great prognosis post-op. In addition to my lymphedema, my radiation therapy also knocked out two of the axillary nerves to two out of four of my rotator cuff muscles. Can't do much at all with only two muscles working, and my arm is getting weaker and weaker, despite my doing every possible lymphedema exercise I know of.
Good luck to you!
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I've wondered about sparkling water too. I like flavored water, Pellagrino, and Perrier with lime feels like I'm having a drink.
Driving is problem. I live in 2 different cities one during the week and the other on the weekends. I noticed that I lost feeling in my arm about 2 hours in. I'm only driving 2 and 1/2 hours. I've changed the way I do things on the days I drive. I wear my night sleeve the night before, I don't wear my sleeve until I'm ready to get in the car, any packing and carrying is done the night before and I don't eat before I drive. I don't know which of those things fixed the problem so I'm doing them all because the problem is gone.
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LaCroix sparkling water has no sodium.
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Megan: And any other new people: Here's a great site that several of our BCO members were instrumental in putting together.
http://www.stepup-speakout.org/
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That's right, Balthus, I meant to add that to my post but forgot. I've only seen it available in cans, and I'm sti dealing with taste changes from chemo. Have you seen it in bottles anywhere
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We have a soda stream, and I have to say that it has been invaluable. During chemo, when water tasted like soap, I could drink seltzer flavored with lemon juice. We all use it and have cut our consumption of actual soda by 90% or more. Even my DH, the Dr. Pepper addict, has converted. Between his high blood pressure and my LE, we're careful about sodium.
This is my first summer with LE: the trigger that really sets it off seems to be heat. We've had a number of days when the temperature is over 90 degrees, and that's when my arm is most swollen. As soon as it cooled off a bit, the LE eased. Thinking about moving to the arctic circle....
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Glennie: My LE therapist (wow, I got one visit!) approved the book even though she made fun of me for buying it. She she wasn't sure if doing the diet there was more important than me just getting the last 15 pounds off for.
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Good to know your therapist approved the book. I'll show it to mine when I get it. Hoping the diet helps. Have you started it yet?
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Glennie - I need to find a cookbook or a blog or something and collect recipes that follow it, or portions of it. I have to have everything planned out in advance and I go through cooking blogs to meal plan. I need to find some new blogs!!!!!!!!!
The diet isn't some revolutionary thing, I don't think, I just have to develop a repertory of recipes to work with.
Any ideas? Pinchofyum.com might be a pretty good place to start and I have some vegetarian blogs in my feed (although that won't play well at home). I'm fine with way less meat.
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hmmm,, Wonder if the Lymphedema Mavens have a recipe blog. Or wonder if StepUpSpeakOut would be interested in one?
Maybe we could start a recipe thread here in the LE forum? That way we could gather them all in one place.
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Do any of you that have LE in one arm sleep on that side? I'm a slide sleeper and have been avoiding my LE side.
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I sleep on both sides, just roll over periodically. At this point the only thing that seems to make my LE flare is a drop in barometric pressure (I didn’t even need to wear the sleeve in the triple-digit Roman heat). My armpit is sore from cording tonight, and the upper arm feels squeezed despite wearing a sleeveless dress. I began to panic, and then checked the weather report.....yup, barometer low and dropping, storms on the way. (Sinuses acting up too). This too shall pass.
As to sodium, I watch it just because I have hypertension (controlled by meds). I don’t eat processed foods, and I use only a dash or a grind of sea salt here & there--nothing even measurable, much less a tsp. I was doing okay till we were on the flight home from Rome last week--my feet swelled so badly I could barely remove my sandals, and my R heel hurt so much I needed a wheelchair to get me through O’Hare. When we got home, Bob noticed my shins were pitting too. (Oddly, neither of my arms). I had gained 7 lbs. since leaving for Italy, despite sharing all courses with Bob (portion control) and walking like crazy. My PCP x-rayed my feet to rule out stress fractures and that’s how she found a heel spur. She put me on Lasix. Within 3 days I was down 2 lbs. from my pre-trip weight! (Yup--9 lbs. of water). Turns out it was a combo of too sudden an increase in exercise without working up to it, more salt than I was used to (salumi, olives & cheeses) at home, heat, and 10-hr. flights (despite getting up periodically & walking). Off the Lasix now, but if my feet start to swell again I will go back on it. (As long as my toes are “long” & thin I’m in good shape. If they begin getting short & fat again I'll know it’s time to elevate my legs, ditch all salt and take Lasix).
In Italy, the sparkling mineral waters we drank were quite low in sodium. At home I make my own seltzer with filtered tap water from my fridge’s water dispenser using a Sodastream. I do use bottled spring water (Crystal Geyser) in all my coffee makers, though, because it tastes better and is actually softer than my tap water (so I don’t need to descale as often).
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I used to get migrains and swelling with changes in the barometric pressure until I had to start eating gluten free, now, no more migrains, NONE. I used to have to blow my nose every morning when storms were expected, not any more and my psoriasis is almost gone. Diet is maybe the most important change to make and I'm really interested to see how dietary changes effects LE. I hope you guys keep us informed!
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I was strictly grain-free (therefore, gluten-free) for the first 6 months of my low-carb diet back in 2013. I lost weight and had more energy, but I still had sinus problems, especially barometrically-related. So it’s not always gluten that’s the culprit. Only 1% of people have celiac disease, and what many others assume is a gluten intolerance may instead be a sensitivity to other compounds in some foods (e.g., wheat itself, sugars, starches, yeasts, etc.) that also happen to contain gluten. So I am skeptical of any advice that any one substance (fat, gluten, dairy) is a health hazard--except for sugars and refined starches, which most physicians are beginning to accept as having harmful effects beyond their caloric payload.
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I'm gluten free because I developed a serious form of IBS, and I improved quickly when I was told to try a Gluten free diet. The side benefits were unexpected. My dermatologist is adding my results to a preliminary study being done on the effects of eliminating Gluten on Psoirasis . I had migraines at least 2 times a week for over 30 years and haven't had one since October when I started the gluten free diet for me it's like a miracle (anyone that gets migraines knows what I mean). Barametric pressure still effects me with a very light headache before a storm, but the headache goes away once the storm gets started and I don't even take a Tylenol for it.
I'm convinced, Gluten can have a negative health effect beyond Celiac.
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This study from Columbia University examined gluten intolerance vs celiac disease. They cause different symptoms and wreck havoc on the body in different ways. Gluten intolerance is caused by an overactive immune system and causes more systemic inflamation than celiac disease, which is not to say it is worse. Here is a summary article and the research paper.
http://newsroom.cumc.columbia.edu/blog/2016/07/26/...
http://gut.bmj.com/content/early/2016/07/21/gutjnl...
My sisters and mom went off gluten a couple years ago and had significant relief from a variety of ailments. I reduced my consumption, but didn't totally avoid gluten until 6 months ago. This was because I was getting a nasty rash that I tracked down to wheat consumption. Remarkably, my bowel movements became normal and bloating disappeared. My winter arthritis calmed down and my pesky chemo induced toe fungus receded too. Occasionally if I indulge in food with gluten, but pay the price fairly quickly. My family has very overactive immune systems with lots of rather odd allergies. The irony here is that I was in the 3rd generation of wheat farmers on both sides of my family and worked the summer harvest.
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Hello, I'm new to this site. After ruling out deep vein thrombosis and my arthritic knee from an old injury, I have now been told I have LE in my leg
. It's double the size of the other one and painful especially at night. I had to wait for an appointment with a lymphedema certified therapist(is there any other kind). Our cancer center has a lymphedema clinic. So I go there tomorrow to find out what stage. BC is the gift that keeps on giving. I was vigilant about my arms, and doing the suggested exercises post surgery. I didn't know my leg would get it..
Any tips you can give me. I don't even know what to ask. The painful odd heavy sensation is better during the day but when I rest at night, the pain kicks up. c
HELP. I just finished rads, dealing with some pretty terrible burns, and now this out of the blue.
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Valstim - Hugs and waves! I'm so sorry to have to see you here. : / I have no idea about LE in the leg, although (this sounds silly) I'm friends with a lot of women on Instagram who have it. I know from them that the treatment is basically the same for the arm. I guess you didn't get LE in your arm post surgery?
There are exercises to do, also something called manual lymphatic drainage to help move the fluid out of your leg, and compression - bandaging and sleeves. All these things help your body move the fluid out to areas that can get it and process it. Until then, I would think that keeping your leg elevated and drinking lots of water might be the best things till you see the pros. If you can keep away from salt, that will help.
Keep us updated on how your appointment goes tomorrow.
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I'm new here too. . .Just diagnosed with truncal LE. Pain and swelling on both sides, even though I only had nodes taken on right. I may have had this for sometime, since I've been fighting continued nerve pain and numbness on both sides following EX 13 months ago. I bought the LE diet book on Kindle.
This is my true irony. . .my 14yo was allergic to wheat for years so I know all about the GF diet. Tried all kinds of recipes that he would never eat, with the exception of Namaste brownies and spice cake. So recently we found that he outgrew the allergy and now he eats wheat breads. Joke's on me,
I'm already vegetarian (18 years) and I have a mild milk allergy so no milk and very little cheese or yogurt products. I also take several supps refularly for SEs from Tamox.
Gluten will be my downfall because I'm a carbaholic. I also drink way too much diet coke and I love Sparkling Ice, both of which are artificially sweetened. So for now I am going to try to wean off those two items in favor of sparkling water and lots of green tea. I discovered the benefits of green tea three weeks ago when my knees started to swell and hurt badly.
I'm also going to have to cut down on my salt intake. . .another bad habit, although up until now the extra salt has not effected my health.
I'm being sent to the hospital LE clinic for massage and we'll see how it goes.This bites. I'm open to suggestions, and especially curious about the LE diet benefits.
Scottie
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Hi ladies. I am 2 years post double mx and DIEP. I had 2 nodes removed. Since surgery I will get periods of internal swelling (feels hard) but no swelling that can be seen. Both my MO and BS say it's part of the healing process, but I'm starting to doubt them because it is getting worse. It feels like somebody screwed my booby on to too tight. Plus I get uncomfortable tingling and itching across my chest and in my back. The horrible heat this summer seems to be aggravating the problem. Wearing a tight sports bra helps.
Does this sound like truckload le? Any suggestions?
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Debbie - it could well be Truncal LE. You should make an appointment with a certified LE therapist. None of my docs took my truncal LE seriously so I found a specialist on my own. You'll find many references in this link below along with lots of information about LE Good luck.
http://www.stepup-speakout.org/
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How to you tell the difference between LE and post mastectomy pain syndrome? Does a PT help with either problem? Does a chest wall recurrance have any of the same symptoms, do they have to rule that out first? Monday I will look into seeing an LE therapist, not sure if I will need a script for insurance to cover it.
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debiann: you said "wearing a tight sports bra helps". That made me think back,, before I found out that I had truncal LE, I did notice that wearing a bra with my silicon foob helped my symptoms. I think the heavy foob put pressure where it was needed and made it feel better. I'm not saying you have truncal LE,, but if wearing a bra helps the symptoms, like it did for me,, so it does leave me wondering if you do have it. Heat in the summer can be an aggravating factor too. Trunca swelling can be very subtle,, very hard to see,, I think that is why many doctors don't "see" it.
And I'm not a doctor,, but you are 2 years post surgery,, and they say you are still healing? really?
Your insurance may want a script to see LE therapist for them to pay for it.
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@ debiann You need a referral from your Dr not only for insurance but where I live you need it to have a script or referral to get an appointment with a PT. in this case it's best to get it from one of your Oncologists or the surgeon. If your pain isn't what you feel is ordinary or expected you should see your surgeon.
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