GRRRRRRRRR I HATE LE..........
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Hi All, at first I only had lymphedema in my right arm and now it's in both arms!! The custom sleeves are so expensive and make me feel claustrophobic and hot, let alone trying to get them over my shirts and sweaters and fit my coat sleeves. They say not to let the doctors/nurses do bp, needles in either arm but I have an appointment with my primary soon and he'll need to do blood but since I'm new to the both arm business where are they going to take the blood from? Any answers?
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Dila, you can have blood draws from your foot.
Yeah, I know, it's a bummer.
Leah
edited to add: you can also have BP done on your leg.
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Dlia, take a look at the discussion here: http://community.breastcancer.org/forum/64/topic/786992?page=4#idx_102 There are some great suggestions that can help you make your needs known. Sometimes our primary care docs are not as well informed about LE as we hope, and you may need to help yours understand why an alternate site for draws, IVs and BPs is necessary. Here's a document you can give your doctor, written by a physician with LE, that gives a no-nonsense explanation of your needs: http://stepup-speakout.org/essential%20informat%2...
Good for you for asking about this!
Carol
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I forgot how I hate feeling strangled in my compression bra. Pain sucks.. especially when it brings swell back.. I have been so in control of this and now a big setback.. Question: with me being in so much pain, not much would happen if I went back to the LE Therapist? Got to get the pain in check first.. so all I can do is my MLD gently and wear my compression? Haven't paid for my new insurance yet, so no insurance atm.
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Wrapped my arm for the first time in ages.
This weather is crazy. It was 39 this morning and zero right now. -25 wind chill.
I know it is worse in other places. My arm is killing me.
Hope everyone is safe and warm.
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Dawn-Sorry you are so uncomfortable. It's cold here in Chicago, too. Schools, museums, etc. are closed. You know it's cold when we cancel book club. Stay warm.
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looks like I'm going to go see my LE therapist again. Bummed. I did so well for a stretch, then playing with meds and pain came back. Pain definitely = Swell for us.
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I have a question:
I fractured my left shoulder 4 weeks ago. I didn't need surgery and so far no LE. I began wearing my compression bra again for 6 hours a day, because my LE pt said to wear it until March. I couldn't wear it while I was wearing my immobilizer. I start PT for my shoulder tomorrow. Should I wear my compression sleeve and glove? I can't get hold of my LE pt so I thought maybe someone on this site might know. Thanks a lot!
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I didn't when I had pt and ended up with swell. It might be a good idea, but try to get LE therapist another call. And if they ice it afterward, make sure you limit how long.
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Dila - you were told to put your sleeves OVER your daily/outer wear? If I read what you wrote correctly. Anything/clothes/etc. under the garments will keep them from working as they should.
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Thanks-GMA. I'll try her again in the morning. I sure don't want it to swell.
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hello to all my swelly sisters. I am about 8 months out from my lymph node transfer surgery. The arm and hand look pretty good compared to before. My doc keeps a close eye on me too. I developed a cellulitis infection about 8 wks ago which was only 3 weeks before my scheduled revision surgery for recon. It has taken a bit but I think that I have finally turned the hump and my LE is under control again in the arm My doc does not want me to work out at all without my LE therapist overseeing me to make sure that the exercise does not trigger any swelling. This sux as I have lost 25 lbs since that surgery last May and I really want to get my jiggly arms under control. My insurance allows minimum visits per year too and I just cannot afford to see her just to work out....ah well guess my arms will just have to jiggle a bit. Le is such a wicked and unpredictable thing. I met someone who had ALL of their nodes taken out 9 years ago and has not a hint of LE in her arm. Happy for her to be sure but wish I knew what really triggered mine 2 years ago
Maggie
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Maggie - Boy can I ever relate to wanting to get the jiggly under control. I looooong to do planks. I did so many before my DIEP and they just snapped me into shape.
I just want to vent about the cold. Or, the 'polar vortex' as the newsguys like to call it. Between scraping my car, shoveling, & taking my parka on and off 10 times a day, my arm is really sore. It's not too puffy, but its the first time it's ever hurt. Grrrrrr.
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Maggie, my mother had all her axillary nodes removed about 44 years ago, and she has never had any LE issues. I got it with 5 nodes out, go figure. Some of us are born with robust lymphatic systems, others not so much.
I'm troubled by the advice to work out only while in the direct presence of your LE therapist. I understand the worry about exercise causing swelling--simply raising core body temp causes the body to increase lymph production, and working against unaccustomed resistance or weight has the same effect. But to imagine that working out with the CLT next to you can remove those two lymph-production triggers is overstating even the best therapist's reach. I know exactly what you mean about wanting to continue to exercise as a weight-management tool, and there's a suspected relationship between overweight and LE, so we want to avoid being overweight if possible (elusive goal for me, sigh!). While once diagnosed with LE, there's no documented connection between losing or gaining weight and LE changes, there is a known higher risk of eventual LE for women who are overweight when they begin their BC treatment. Many CLTs find that anecdotally their patients' LE improves with weight loss. I'd think that your surgeon would want you to have all weight-management tools available, and taking exercise out of the equation sure seems counter-productive. Not to mention that it makes sense to be conditioned for life's daily activity--better to be conditioned enough not to get winded while climbing stairs or so risk swelling after carrying in the groceries, both of which could signal stress to the lymphatic system.
So, why not propose to your surgeon a strategy of meeting with a therapist two or three times to craft an exercise strategy that you can safely and reliably follow on your own afterward? It would be helpful to have someone work with you to identify a pace (in the case of cardio) that's as 'just right' as possible to increase your heart rate without overdoing it, and to devise a strength training program that's PAL compliant and coach you on exercise form so that you don't make mistakes that can injure you and thus draw lymph to the rescue.
My experience is that CLTs, despite being PTs and OTs, are not necessarily well trained in exercise form. The best answer would be to have a few sessions with a CLT and a certified personal trainer working together. That sounds like a pipe dream, but if you have a gym that offers LiveStrong or some other cancer survivor exercise program, you might have a chance at finding a trainer who would be willing to meet with your and your CLT. Some of the LE clinics around me have formal relationships with fitness gyms. We had a PAL workshop here two years ago (based on results from the PAL Trial, i.e. Physical Activity and Lymphedema, a clinical trial about exercise and LE). Two hospital systems sent pairs of participants, one a CLT and the other a certified trainer in the hospital's affiliated gym, and they work together all the time. I work out with a trainer quite often, in a small-town gym where an hour of personal training costs less than a few Starbucks lattes, so it's considerably cheaper than what I pay for an hour with my CLT, even after insurance. You might find that it's less expensive to have periodic check-in sessions with a trainer than with your therapist, a good answer if you're able to get them together for the initial planning and coaching.
The surgeon is doing groundbreaking work, and instead of simply ruling exercise out, I wish he/she would try to break some further ground by picking up the phone to a LE clinic and trying to arrange a realistic way for you to cautiously, carefully craft a program of movement that you can continue on your own.
Having said all of that, you have been through a lot, and node transfer surgery still has a lot of unknowns in outcomes and how to manage recovery for maximum gains against LE. So it sure would be understandable if you personally felt confident working out only with a knowledgeable coach by your side. You sure want to protect and extend the progress you've made.
However you approach the exercise challenge, best wishes for continued success in your node transfer results. Sounds quite promising so far!
Carol
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I do not understand why you would only 'work out' in the presence of your CLET. That would incredibly limit 'working out'. I do see saying not to do too much til you have seen one and gotten education. I only see my CLET (OT) twice a year when its time for him to reorder my sleeves and gloves. I do occasional call him IF I have any question and could get in to see him if nneeded basically, he has always told me to do anything and every thing I want but to 'listen to my body' and it will tell me. I am very active and usually only work out in the gym during the winter as doing all my outdoor 'stuff' that I do all summer is impossible during winter here. I used a Personal Trainer at the gym for a while 'early on' - she was an Olympic level competitor and a BC survivor. The more active I am - the better the LE. My Guy actually age me a fly casting lesson in one of my appt when I first got into fly fishing - he's been an avid fly fisher since childhood.Do not be afraid to be active - it's important for over all health/fitness. "Working out' is not only time spent in a gym. Just learn what works for you.0
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Kicks, I couldn't agree more when the challenge is 'just' lymphedema, but I can sure understand mags' and her surgeon's concerns about activity after a lymph node transfer. Careful and cautious is how I would approach exercise after a node transfer. No one really knows how long it takes for a transferred node to gain maximum function. Is it more sensitive than 'just' a LE arm to being disrupted by strenuous activity? We can't say, so caution makes sense. But like you, I'm amazed that a surgeon would limit exercise to what can happen side by side with a CLT. There must be a more practical answer than that.
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Have any of you dealt with/used Dr. Chen from U of Iowa? My PS recommended I take the 3 hr ride to meet with him & be evaluated for LVA minimally invasive corrective surgery.
His staff seems extremely nice and very informative. I made an appointment for early Feb (have another surgery to deal with 1st) which is a 2 day evaluation with some green dye infusion.
Just curious if anyone has personally worked with him.
Thanks!
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hello
Havnt been here for a while
I'm the former Grannydukes,,,
Tryin to make a long story short
I moved to PA where it's very cold.I had a LE flair up today and went to a natural dr.She told me to do everything opposite then what I was told here
She said it came from the cold so I need to put heat on it,hot showers,no bra,caster oil for massaging 2x a day.everyone I no uses her and thinks that she is GOD.Me I'm not sure what to do but I no I'm in pain.
What to do?
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FireKracker - She may well be a great natural doctor who doesn't know much about Lymphedema.
"It came from the cold" ???? Perhaps it is rebound swelling from being cold but otherwise that statement doesn't make much sense.
"Put heat on it" ??? Has putting heat on anywhere your LE has flared helped it? For many or most of us, heat makes us swell.
Doesn't sound like this lady knows much about LE. She may well know a lot of things, but not much about LE in my opinion.
Stick to what you know and what works for you.
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I put the heating pad on for just a few min.and it did help a little
No bra is what made me stop...as soon as I put the compression bra on it did feel betta
I now have my arm elevated.
This usually acts up if I lift something heavy or like I did last week peeled 3lbs.of potatoes.
Thanks dawn hope ...i should have come here before I went to the dr
I usually use ice but it's freezing here.
I forgot how nasty LE is,hello wake up call,u been away so long.
Burning pain really stinks
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FireKracker - Peeling 3 lbs of potatoes could set it off.
I cooked two big pots of vegetable soup on Monday and the cutting, chopping and everything entailed in that process has set me off. This weather hasn't helped. My local meteorologists need to hire me … my arm is the best at predicting weather. 
These dramatic temperature changes going on in our country right now can also set our LE off. Also, we are aware of drinking enough water when it is hot but we tend to forget about it when it's cold … but dehydration can be a big problem in the winter and that can cause our LE to flare a bit too. Be sure you're drinking enough water. Hope everything settles down soon.
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so it's probably the potatoes that set it off
I have been so good with this,havnt had a flair up in about a yr.
Where I had the SN biopsy it always hurts
I always drink lots of water all yr round so I no it's not that
Next,,do I do the massage with the caster oil? Don't think it could hurt do U?
And I guess the heating pad is a no no along with the hot shower
Back to square1...I do no the routine
We joined around the same time..thank u.xo
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FireKrac, When I cook up a storm my concern with all the chopping vegs is that I may set off something so I think the spuds did you in.
Good to elevate that arm and no repetitive work on it until it settles. Wrapping yourself might be in order- you decide. As for massage I would try self MLD instead and I don't know what the castor oil will do. It sounds like she wants to warm up your body. I would just dress up and crank up the heat if you can afford it and hope that your body adjusts to the new weather change.
My guess is that she is a good doctor but really has no LE experience and we know that is a different bag of cats.
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hugs
I'm done with any repetive work forever!!!!!!
My arm has been elevated for about 2hrs.
When the dr asked me if I used cream when I massage I told her no,that's when she said caster oil..yeah I'm freezing,heat is turned all the way up cause I don't give a damn about the bill..my health and the pain comes first.dont u think any oil to massage will heat up the arm..I would like to try the caster oil,then before I go to bed take a warm shower...how's that????
Yeah she is a good dr.BUT I got scared cause the breast was so large..should have come here first
Been to many LE spec...so I do no the program.
Thanks for all the help...
Any thing anyone else has to offer I would appreciate but I think u covered it all
Except the castor oil!!!!
Xoxo FireKracker,,
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FireKracker - I really have no clue regarding the oil.
Because of cold, ice and snow … I haven't been working out like I normally do and I have noticed that has a HUGE effect on my LE. It's been worse because I'm not exercising like I normally do. And, I've eaten things in the last 3 weeks that I normally don't eat (refined sugar, wine, pastries). Sugar causes a big inflammatory response for me, as does gluten and nitrates (like in the wine). I think I'm paying for that too.
Like Hugz mentioned, I would try the MLD. I've had to wrap this week because of all the above … too much cooking, not enough exercise, drastic changes in barometric pressure, etc,. After 3 days, I'm finally doing better. Hope you do too. xo
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thanks so much for all the input
i do my stretches and massage on a regular basis
i try not to eat sugar and gluten and over the holidays i did not eat any more then i usually do
i only drink water and coconut water
i had stomach surgery back in march and i really have to watch what i eat...Bread is my enemy cause i have so little things that i can eat..
i did the castor oil massage..it did feel good but i put my compression bra right back on.I never wrapped with all the therapists i had wrapping the breast/trunk was out of the question...sometimes i do the MLD,maybe ill go back to that too
once again i want to thank both of you for all the input..i think im good to go now.
If not ill be back
hugggs firekracker...
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thank you ladies for your input....it is not that my surgeon does NOT want me to get exercise...it is just the weight training aspect that she wants me to be careful about. It is also because of my history of LE and cellulitis. I was diagnosed with LE about 2 years ago and have had 4 cellulitis infections. I am her only patient who got cellulitis after the lymph node transfer and therefore I am a proceed with caution patient indeed. I do have the all clear to walk walk walk as much as I want so my hubs and I have been doing that.
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mags, thanks for the added info. And seriously, thanks for posting about your surgery, your experience, and the results, both great and not so great. Walk on!!
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I wish all could get this surgery if given the opportunity. The protocols have changed even since I had it done in May. My surgeon is also a certified LE therapist. She would love to just focus on treating LE patients but cannot afford to do so financially. She now requires about 60 (40 when I had it done) visits with a therapist when you return home as well as about 6 months in compression bandaging (for me it was 12 wks) I still wear my glove and sleeve during the day when active esp when walking. I have left it off all day when I have been home and not much on my schedule. Also wear a farrow wrap at night. Not a daily MLD practice, as some days I just don't want to...errrrr but pretty much do it at least 75% of the time in the evening.
Mags
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Firecracker, I don't know about using castor oil, but my PT has had me using coconut oil and it's been helping.
GmaFoley - Did you get signed up for CoverOregon, it's making a big difference in what my husband pays for insurance and a better plan, also, if you were accepted I hear they just extended the payment date out to the 20th. I've started going to a Axis Physical Therapy in Eugene for my pain issues from MX, chemo, radiation, LE, AI's, neuropathy, chemo induced pain syndromes, etc..... Anyway, they're holistic, and you work with multiple therapists, they also have on-site therapy pool, anyway, after 4 appointments I've seen great improvement with some of my pain issues, they've done myofascial release, some lymph massage (and I might add correctly), soft tissue work that has broken up a bunch of scar tissue, I start water therapy tomorrow and will continue that before each of of my scheduled therapies. I also quit taking my cymbalta, which was helping with my fibro and neuropathy pain, but causing high blood pressure, headaches and unreal fatigue, so those pains have been getting worse, but they are working on those too. They're great at getting me doable home care, teaching me different ways to move and do things, teaching me relaxation, ..... It's a whole system of self-care, mental & physical management of my pain, that with their treatments have given me hope that I might not have to live with these problems forever...I've been trying different things, treatments, therapies, meds, for 3 years now, and I think that I finally found it with these people. I have to drive to Eugene once a week for a 2 hour session, but it's worth it.
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