GRRRRRRRRR I HATE LE..........
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I have a new LE trigger - - HOT FLASHES! For some reason, I just started having hot flashes in the last few weeks. Hyster in 2005 - no hot flashes. Started AI April 2012 - just now getting hot flashes. When the hot flash starts my arm gets angry very quickly. I can watch my wrist and hand swell and feel the tingling as the hot flash continues.
Definitely not funny, arm is definitely better this morning, but I have to laugh. I mean, I can 'control' the repetitive action, I can stay out of the heat and humidity, how do I avoid a hot flash ?!! They just happen.
Okay - - on with life
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Did you have your ovaries removed with the Hysterectomy? I see your cancer was ER+. Were you put on something to control the estrogen? Those do cause hot flashed. However I never had one that cause my arm to turn red.
Is it possible that your body is fighting off an infection? Watch that arm though. Hope somebody else chimes in.
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Ovaries gone. Never took any estrogen after surgery. I am on Aromasin now - aromatase inhibitor. My arm didn't turn red - just got hot with the rest of me and swelled up some. It got better when the hot flash stopped. Deep breathing and some elevation helped the swelling go (almost) away in a short while.
I suspect the hot flashes are just part of being on Aromasin. Just annoying. I thought I skipped that side effect but I guess not.
Life with LE and aromatase inhibitors is always something new and different.
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Hello! I had my BMX in April and my last chemo on 9/10. My lymphedema didn't appear till July/August. I see a physical therapist 2 times/week if she can fit me in. She has me diagnosed as mild but it certainly flares up. I have a glove and sleeve but I don't wear them for I've noticed my hand blows up more with them on. My PT is going to check the sizing the next time I see her. There are 245 pages on this post and I just don't know where to start with reading all of them so I am hoping some of you can answer my questions for me...
My radiologist mentioned that she has seen improvement in people's arms/hands after chemo has left, or is leaving, the body. Have any of you experienced this? I'm hoping my lymphedema will improve with time. What are your experiences and what do you find that helps the most with your swelling?
I thank you in advance and hope this finds you all in good health and on your way to recovery.
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Ohio, odd you should mention hot flashes. I'm just starting to get them, just mother nature, not related to any therapy. And I too was thinking that when I get a flash, my arm also aches. So you have confirmed my suspicion. Sorry you had to experience this yourself to confirm I'm not imagining things!
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mcgis, I didn't have to do chemo so cannot comment on your question, but it's a great question and I'm sure some will will come by with some experience to share. My fingers are crossed that you get the answer you're hoping for!
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Hey, well my BB HOPEFULLY should be restored in an hour or so. Port blew out at the box at the end of the road. Probabaly due to the wild weather.
Hugz you are a sweety.
. Yea my PN is not BC related. Theres no cure for mine. I've learnt to "work around it" and if I do that, things are usually doable, but sometimes I'm reminded of how much of a tightrope I have to walk to manage all thats going on. To pull me out of the blues sometimes all I need to do is think of someone with something like motor-neuron disease. (UGGGHH that IS a shocker.)"Oh and what about that LE glove I wrecked chopping onions in it. It smells like BO now."
LOL LOL LOL Thanks for a good laugh!
Thx Binney for your tips ...Im going to comment further in the "Hats off to those who wrap" thread.
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I'm a mess, ladies.
Just left my last visit with the therapist and I literally broke down in tears.
I hate LE so much. I hate feeling and being so broken. I hate that we cannot get the continued care we need. Do we give diabetics a little training and then expect them to manage by themselves forever? Hate this so much. Hate being so emotional. I'm not normally like this.
I have been so angry at LE. Now I just feel so broken, so sad. 0 -
Dawne-Hope, I wish I had encouraging words for you! I hate LE in both arms SO much. My sleeves are really bothering me today. I am trying to not let this whole bc fandango define me but it's hard when it's so visible in the sleeves; always having to explain them. All we can do is breathe and take it a day at a time, finding things to be grateful for.
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To all the teary eyed girls. I too have had my share this weekend. It must be something to do with the change of season....oh who knows for sure. I almost convinced myself that I would quit wearing my LE gear. Then I had to tell myself that if I did it would only get worse and then it would become more painful and move into other areas.
It is frustrating for sure. Anyway I just want to send a big kiss to you gals. So here goes...... Its a big sloppy one too.
There now you will feel better because you have had your caring kiss for the day. NO... thats two kisses for the day!0 -
Dawne-hope BIG gentle hugs. Thats the frustrating thing. We are caught between a rock and a hard place with LE. We CANT ignore it. Thats the rub. SO much for forgetting cancer. We have to contend with this monster every single day and some of those will treat us better than others. I too am annoyed (again) that last night this time my wrist had a lump on it and thats never happened before. It is SOOO tiring trying to learn to get this wrapping right.
Gentle Hugs ladies especially for those struggling more than normal.0 -
My heart aches for all you dear ladies. LE is the Worst part indeed to all of this nightmare
question to anyone who has had a custom sleeve made. I ordered one a month ago..came in...went to therapist to check the fit and she said it should be angled on the outside part of the arm...it was not it is angled to the armpit side of the arm...we sent it back along with the custom glove with the really way too long fingers. The new one just came today...glove is perfect but the sleeve is still angled under the armpit and not on top of arm toward shoulder. Is the therapist incorrect? Is the angle supposed to be under the arm? To me it made more sense as it can keep the fluid from building up under the arm and direct it to the auxilla. Any help would be appreciated as I have 14 days to return it if necessary
Maggie
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Sending hugs to all who need them tonight. I HATE LE, too!!! Have been told "go ahead and live your life and don't worry about this so much" but this is from health care providers who are not dealing with the constant aching when the swelling is worse, not trying to find something to wear that will fit over bandages when that is what is working. I totally agree that you don't expect a diabetic to go on insulin after a few visits and then never check on them again. And the fact that Medicare does not provide coverage for lymphedema garments really gets my goat! (I am not on Medicare, but that still ticks me off that they do not cover garments to prevent or treat LE unless there are open sores ...).
Tonight I had planned to do my one hour on the Flexitouch or at least do MLD, but got a phone call from a friend who then talked for nearly an hour, and if I don't get my arm wrapped NOW I probably won't be able to do it in time for bed, and if I do that I don't have time for MLD/Flexi, and still didn't get my Lebed exercises in today .... how does one keep spending 2-4 hours a day taking care of this stupid useless disease???? How high a priority is it, when so many other things demand time, and I only have about 10 hours a day that I am actually up and functional now (better than the 6 hours a day I was having a few months ago, so at least I am seeing SOME improvements!). OK, rant done. Thanks.
And more hugs to all of you, and thanks for those kisses!0 -
Soooooo glad we have this place to come and express our grief and brokenness, and be understood and accepted. Grieving is a long-term process, and we need to be generous with ourselves and give ourselves the time we need to reach toward healing.
Hugs, prayers for all of us,
Binney0 -
Mags, my sleeves don't angle one way or the other; the top is straight across. But the real question is not what it's SUPPOSED to do, but how is it working for you? If it's helping with axillary swelling and not leaving the top of your arm bulging at the outside, then it's right for you. That is the point of the 14 day trial period. Keep careful track of it day by day and see how it goes.
Let us know what you discover!
Binney0 -
thanks Binney...I was afraid to wear it just in case it was wrong. My off the shelf sleeves really give me a major muffin top. So fugly with sleeveless tops of summer. My swelling has been quite controlled since the lymph transfer in May. Left arm is smaller than right one now which is awesome.
Maggie
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mcgis - I had both chemo and radiation and niether seemed to have an affect on my LE arm. LE was not better or worse during treatment. I was probably more compliant with wearning my sleeve during chemo and during radiation I used my Flexi-touch daily as long as my skin would tolerate it. I was very compliant with hydration during treatment. As always, MLD and elevation also helped.
For me - it was more a time of learning about LE, trial and error to learn my triggers and how to manage my LE. I truly don't think chemo or radiation affected my LE - - - and I had rads to the underarm and neck!.
My thyroid crapped out but my arm was pretty happy.
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Carol - I'm just adding hot flashes as another trigger...argh. Thinking about finding those little cold packs to carry around for my neck and brow to cool down the hot flash before the LE gets upset.
Okay, I'm cracking myself up. Pretty soon I will need a rolling case for LE supplies: the sleeve and glove (that i should wear but always have handy, the first aid stuff, ice packs for hot flashes, wrapping supplies for my hand, what else would I put in my LE Crash Cart?
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Ohio,yah it seems funny how my LE baggage is more than my clothing bag when I travel. Which reminds me if I did fly I would not check my LE gear under. To much of an investment to have lost and you may need it right away.
To add to your list, antibiotic cream,bandaids, a supply of strong antibiotics in case you can't get to the hospital ASAP with cellulitis, maybe a sunshirt to cover up in hot climate(I blew it here while camping and it contributed towardsLE, major sunburn)extra sleeve,glove and maybe a shaper if you get uncomfortable in your trunk. Lastly maybe a good stiff drink because this LE stuff can drive you crazy. Oops I forgot one good stiff drink can affect my LE so scratch that suggestion. Grrrrr it's a lot to learn and comply with.
About the hotflashes, during chemo I had a average of 40 nightly that would wake me up sweating like a pig. I went to costco and got a couple of huge size men's wick away tee shirts for under 20 bucks and laid hand towels on my pillow and swapped the towel every time it got soaked. The wick away was heavenly compared to wearing wet cotton tee.It dried faster The wick away men's tee's were way cheaper than buying the hot flash specialty clothing online .and worked pretty good.0 -
So far my hot flashes have been daytime and mostly my brow and neck get sweaty - I may get arrested if I wear a t-shirt over my head in public. Just laughing out loud.
Water - we need water in our LE Crash Cart.
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Oh that is a true LOL, I am picturing it now. Hee hee.
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Newbie here...Not farmiliar with this site or messege boards in general. I have just been diagnosed with Lymphedema in my left arm. I found myself a good therapist an she suggested reaching out to find other patients like me. The MLD is going ok...the sleeve they gave me is... well...ugh! What else is there? What do you all do? Diet? Exercise? I heard that you shouldn't do strenuous activity but, I love running, lifting weights all that good stuff...I'm seriously bummed out right now...totally overwhelmed
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Thanks Ohio4me. What does MLD stand for and what is Flexi-touch?
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Hi there tishfin. A good information site is step up speak out i'm on my pod right now so can't copy the link. Just google it. You are definitely in the right spot and can grrrrrr as much as you want. There are many ladies here that run and exercise, but things have to be done in baby steps. First is to work on getting the swelling down. You can also google Lebed method. It is a exercise dvd that helps with LE flow. I'm sure Binney or Carol will chime in soon. Stay away from salt too. Welcome to the land of grrrr.
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mcgis - MLD is Manual Lymph Drainage ( message) That much I know! lol!
GmaFoley - thanks for the welcoming words...I will check out the Step Up site ...thanks
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One more thing I thought of:
Belly breathing
Drink lots if water
Elevate swollen limb0 -
mcgis - here is the link to a website to guide you through everything lymphedema. Carol or Binney will probably chime in soon. MLD is manual lymph drainage (as above) which is a technique your therapist can train you to do on the affected arm to properly drain fluid.
Flexi-Touch is a pneumatic machine that sort of replicates MLD but in a more controlled, timed fashion. This was recommended by my therapist and my insurance paid so I was fortunate. It doesn't replace MLD - it is in addition to.
http://www.stepup-speakout.org/
Keep the questions coming - the answer ladies are here.
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ohio4me - I am currently waiting for my insurance company to approve flexi-touch for me (as well as dealing with a recurrence after 13 years. Aaargh!) and I was expecting to have to continue with the exercises, the sleeve, and the night garment, but I was hoping the F-T would replace the self-massage. Are you saying it won't?
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Dorian, I sometimes substitute FlexiTouch for MLD when I am just too tired to deal with it. I do try to do a little MLD off and on all day whenever I am somewhere that others won't see me and think me odd, and I do at least a half hour MLD after FlexiTouch most of the time. I think some people DO use it as a substitute, and it is good for the back where you can't reach easily, but it doesn't do a very good job across the upper chest and NOTHING for the axillary areas, so you really DO need to add some to it to get a good decongestion. I ended up paying for mine out of pocket because I was going to have to pay at least half even if it was approved, and it wouldn't be approved unless I had failed home therapy for at least a month, and then the insurance was approving only about 60% of them ... I am not the most patient of persons, so I got it at least 2 months earlier by paying for it, and I am glad I have it. Would have loved to have spent that money on a vacation, though....
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tishfin, being bummed out is totally understandable, but don't give up on the idea of running, lifting weights, and other exercise and activity. You'll have to craft a strategy to reduce the risk your LE acts out, but you can put these things back in your life if you are patient.
The body responds to stress with added lymph, and lifting something heavier than you're accustomed to, or raising core body temp through cardio work, sends a stress signal. Or at least that's how I describe it. Binney no doubt has a more scientific explanation. Anyway, the guidelines for exercise with LE focus on introducing it slowly and gradually, so that you build capacity and endurance that reduces the stress signal when you exercise.
The whole point of weight lifting is to work a muscle to exhaustion, so the fibers break down and then rebuild with a bit more mass. The exhaustion and fiber breakdown must feel like heck to the lymphatic system, which wants to send more lymph to the rescue, i.e. more than our compromised vessels can handle. So we swell. To work around this problem, LE exercise guidelines suggest beginning weight training with incredibly light weights --1 lb dumbbells, even if you were lifting 20 pounders before LE. Do two sets of 12 reps and then as the weeks progress, add in tiny increments, and you'll gradually get to your desired resistance without waking up the lymphatic system.
It's not foolproof by any means, because our lymphatic systems are unpredictable, but following the slowly progressive approach reduces the risk of a flare-up from exercising. Over time, it's a great way to prepare your arm and torso to pick up life's daily weight--in my case, boxes of books, grandkids...
Here is a resource, written for personal trainers and exercise instructors, and you'll have no trouble applying the information to your preferred exercise: http://stepup-speakout.org/Trainer%20doc%20for%20SUSO-040113.pdf
I was lifting before my bilateral mx / snb/ recon, and I was diagnosed with LE five months after surgery. I started re-entering my exercise life at the six-month mark, following the guidelines you'll read about in the document I linked to. That was about 20 months ago. I recently did a bench press with 55 pounds (2 sets of 12 reps with good form!). The weightlifting and my cardio activities keep me feeling great. Sometimes I get an extra bit of arm ache, but no big LE flares during or after exercise (so far... remember that LE is unpredictable, so I can't say it won't happen).
You can tell I'm a real believer in exercise, and I love doing it. Some women's LE just won't cooperate, however, and try as they might, the arm or torso flares after exercise. So I know I'm lucky, and I sure don't mean to imply that everyone's path to exercise is an easy one. But you don't know until you try.
So tishfin, be prudent, be cautious, share any exercise plans with your LE therapist before you start, and please read the document I linked to, so you know how to be smart about a return to exercise. Then give exercise a try, and please join our LE kick-butt thread and tell us what you're up to!
Carol
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