So tired after MLD, really upset about dx of LE

Embemma

Hi all, this is my first time posting on this site (or ever).  I'm 36, and was diagnosed with DCIS last summer after my first ever routine mammogram.  I had a lumpectomy, re-excision surgery (no lymph node removal), and radiation.  The cancer was found on the outer side of my breast, near the axillar area.  About 6 weeks after radiation, I noticed a fullness around my axillar area in my right affected side, and was dxd with LE (stage 0 to 1) in February of this year. My LE therapist tells me that it was likely the radiation that caused the LE.  I've been having MLD treatment with a therapist, on top of a compression bra, sleeve, and at home lympha-pressor machine that I use twice a day.  This treatment is like another part time job - more intense than RADS.  I have to admit that because of what I read about the chronicity of LE, I'm more upset about this dx than the DCIS.  I could go on and on about the self-pity statements I make to myself, but I'll spare you   One question I have:  I always feel super-tired after my MLD treatments - like the kind of tired I had during RADS.  I nap afterwards whenever I can and fall into a deep, dreamless sleep.  Has anyone else experienced this, and does anyone know why this is?  Thank you for letting me vent and ask.

kira66715

Embemma, when I get an MLD treatment from my therapist, I'm a bit spacey. I totally understand your issues with the time and energy to treat this.



Here's my question: the pump. All pumps are not created equal, and some pumps use too high of a pressure and not all of them work the abdomen and chest. I'm no pump expert, but Binney is, and I don't think they're meant for twice a day.



My LE therapist hated the old pumps as they dumped fluid and created fibrosis.



I'll ask Binney to add her expert advice.

Binney4

Embemma, welcome! Glad you found us, even if the reason you've come isn't such good news.

I too am wondering about the pump. Lymphapress is a fairly forceful pumping system, usually recommended for those with advanced (and most often long-term) LE. The company is also fairly forceful, though, and their sales tactics sometimes result in their being sold more or less indiscriminately. So there may be a specific reason why your therapist recommended this for you, or it may just be it's the brand s/he is used to promoting.

Pumps are not a standard lymphedema treatment; they're a substitute for self-Manual Lymphatic Drainage done at home by us women ourselves. Some people find them useful, most prefer the ease of self-MLD. A pump is helpful in circumstances where self-MLD can't be done by the patient herself or is burdensome (like someone with arthritis or shoulder problems, or someone with several limbs involved). Self-MLD may also be less likely to cause you exhaustion problems. It's also quicker and more convenient, as it doesn't tie you down for an hour at a time. At any rate, using the pump twice a day is certainly excessive, unless there's a specific reason why your LE is especially hard to manage. Even so, I would think the twice-a-day regimen might be suggested for a very short period of time--perhaps a week or two at most, followed by a professional re-assessment of the progress made.

If you weren't taught self-MLD, give your therapist a call and arrange for her/him to teach you. Or see another therapist for a second opinion and help arranging a self-care program that's more practical and less of a time burden. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

That said, LE really is a full-time consideration, even if it's not a part-time job! Remembering to stop and do some deep breathing several times a day, staying really well-hydrated, and finding the right compression garments to do the job are all on our minds constantly. The good news is, it gets easier--honest!

Gentle hugs,
Binney

vlnrph

Jut want to highlight Binney's mention of breathing and also hydration with summer coming (depending on where you live!)

kira66715

Also want to highlight that stage zero to 1 is mild, so I'm not understanding the use of a pump twice a day, and pumps were really designed for arms/legs and unfortunately, therapists do get "kick backs" for pushing them.

Lymphapress is pretty high pressure, and that often moves fluid, but not the lymph protein. Many patients only use pumps a few times a week.

As your LE is primarily truncal, I'm going to put in a link for truncal/breast LE:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

I trained as a lymphedema therapist, and we had a two hour session with flexitouch, that was the total of our pump teaching.

I have a great LE therapist, but I went through 5 not so great ones in the past, I did learn somethings from some of the ones I didn't stick with, but some were plain scary

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

The bottom line,for me, is if your treatment regimen isn't working for you, it's okay to seek another opinion. Or just gather information and work with your therapist on how to modify the treatment so it does work for you.

Embemma

Thank you so much for your thoughtful responses.  Yes, my husband and I've been taught self-MLD by my therapist.  The Lymphpress jacket I use also wraps around my entire truncal area and inflates into my affected areas, front and back, not just the arm.  My therapist says that once my outpatient treatment wraps up next week, I can reduce the pumping to 30 min/day with daily self-MLD.  Thank you for all the resources and links, I'm inspired to do more research and become a bit more gentle with myself, instead of so hopeless and overwhelmed.

Linda-n3

I just found this thread. I was diagnosed with LE just about 2 weeks ago. I had been FINALLY feeling good, has been almost 2 years since surgery, dealing with BC for almost 3 years and am so tired of the whole thing - so consuming. SO, I felt good for the first time in so long that I guess I overdid with some gardening, and about 3 days later noticed swelling in my right arm (yes, I am right-handed! ugh!). So, I am going to LE therapist, have been learning and using MLD, bandages. Don't know much about what volume increases mean and how much improvement I should expect. What I WANT is for my arm go go back to normal size and function, and preferably yesterday, but what is a realistic expectation? I am getting an adjustable garment this week to use instead of the bandages, and am getting a gauntlet. Fingers swell intermittently, but was able to get ring on tonight (no, I am NOT wearing it, just using it as a guide to whether fingers are better or worse), so will continue wrapping them. I am taking a short break from them right now as I cannot do ANYTHING with them on, including personal hygiene, brushing teeth, brushing hair, feeding myself, typing, etc. I sure hope the adjustable garment allows a little more mobility. I feel like this may be the straw that broke the camel's back for me - I have had so many complications and SEs and am mentally, spiritually, and physically just about at the end of my rope with this. Emotions are rollercoaster. I remind myself about a million times a day that the worst of sins is ingratitude, and that my personal goal is to surround myself with beauty and joy, and I am getting through the days minute-by-minute - birds are singing, weather is great, I don't know how to pace my exercise to reduce and prevent LE. Am so frustrated.



Embemma, thanks for posting. I know there are several LE threads that are active, but there is so much to read on them, and I am a total newbie with this I just could not face reading tons of pages about LE right now. Binney, I know that you are the acknowledged expert on LE - am so sorry you have to have this claim to fame, but am very grateful for all the help you give others.

Anonymous

Linda,

Not sure if it would work for you, but I have a glove rather than a gauntlet. When I need to do personal hygiene, etc. I can put a disposable rubber glove over it to keep everything clean. I read that tip on one of the threads here.

Binney4

Aw, Linda, I'm so sorry you've had to join our "swell" sorority! There's still beauty, joy and gratitude yet to come, but you'll have to trust me on that, because the learning curve on the LE is a steep one. (I love your tag line about the gratitude-joy-prayer-gratitude connection. The joy part is where the strength comes from, so watch for those moments of joy each day and hang on to them.)

If your fingers are swelling you need a glove, not a gauntlet, but it sure is possible you're just mixed up on the terminology. A gauntlet has no fingers, just a palm and a thumb; a glove has fingers, but the tops are cut off so we can still feel things with our finger pads. I'm not sure what you mean by an adjustable garment, but there are some sleeves with velcro straps that can be adjusted up the arm. They're a bit bulkier that a regular daytime compression sleeve, and I personally don't find them as comfortable, but give it a try and see if it works well for you. Most of us have had to experiment around to find what works best for us, so don't be afraid to speak up if it isn't a workable solution for you (don't be too discouraged either--it comes with the territory!) The good news is there are lots of options for LE control out there, and you'll land on the right one sooner than you think.

It's great that you're learning self-MLD and bandaging. The wrapping is awkward, but it's the quickest way to reduction, and it's also a skill that's good to know for those times when you overdo and might experience a flare in the swelling. Have you seen some overall improvement in the swelling? Usually the response is pretty quick and you see progress within days. Three or four weeks is the usual first course of treatment, and for some the swelling is reduced by then. For others it may take another course of a few weeks later on to get full reduction. After treatment it's controlled by careful exercise, self-MLD, and compression garments. Some women need to wear them 24/7, others only in the daytime or only at night, and a lucky few only when exercising or traveling.

An adjustable garment can be used either in the day or at night. Regular compression sleeves and gloves or gauntlets are only for daytime wear, when you're active and awake. Wrapping or special quilted, foam-filled night garments can be used for sleep. But you don't need all of that now. Just concentrate on trying out the garments that have been ordered for you and there will be time later to make changes as they're needed.

Simple things can help. Elevate your arm whenever you can--on the back of the couch while you read or watch TV, on pillows at night. Stay REALLY well hydrated (it helps dilute the lymph fluid and keep it moving). Take a minute or two at intervals throughout the day for a few deep abdominal breaths (it stimulates the largest lymph vessel in our bodies).

I sure do hear you about the roller-coaster emotions. Dealing with a new chronic condition is a grieving process, and grief is hard work. Give yourself all the room you need. You can do this! Chocolate helps!

Warm hugs,
Binney

kira66715

The emotional response to LE can be quite profound: it is a grieving, often involves anger, and it involves dealing with a chronic condition--that often will be quite managabe over time, but does require consideration.

We put a link about this on the stepupspeakout page, and know that it cycles: there are times you are in control, and it's a minor inconvience at best, and times it imposes limits and looms large:

http://www.stepup-speakout.org/patoconnorcopng.htm

This was written by Pat O'Connor who has primary LE. LE can impact your body image, your sense of independence, and your relationships. Also, for some reason, it involves shame and embarrassment.

And, over time, it gets better. It does.

purple32

Linda

You asked :
What I WANT is for my arm go go back to normal size and function, and preferably yesterday, but what is a realistic expectation?

Getting the arm waaaaay down is a 'realistic' expectation !  Improving funtion over time , gradually , is also realistic!  The emotional part is the toughest - I know all too well, but hang in there . You have come to the best of the best support groups !

The stepupspeakout link will help you more than anything, but I suggest you visit the " all things sleeves andf gloves" ( or is it glove and sleeves?  :>)  right here on this LE thread.  You may find it helpful as it surely sounds as though you might benefit from a  glove.  I love my Farrow glove, but  everyone is different.  Checking out that thread may  help to at least  show you what the possible options are.

As for the swelling and fx of the arm, your best help wiill be your LE therapist as well as your own MLD, twice daily and compliance with your regimen of hydration and eventually, exercise (WITH sleeve and glove on).  For that, you may want to visit the exercise forum here since you will want to understand how to go into it gradually,  Additionally, a new and comprehensive document on exercise was recently written by one of the ladies here ( a project of Carol57) and is posted on the stepup site.

I have  a feeling that once you have soaked in all of that info ( which is a LOT) you will see there are concrete steps you can take to manage and control this, and  eventually hope will emerge!  in the meantime, go easy on yourself.  It does take time.

Best Wishes!

Embemma

I'm going through all five stages of grief simultaneously. Denial, anger, bargaining, depression, acceptance.  All very confusing feelings requiring a lot of self-compassion.  And I currently, because of this, find myself only able to digest LE info in small doses.  Hang in there, Linda and everybody!

Binney4

Embemma, yes--don't be in a hurry with the LE info. What you need for TODAY is quite enough to deal with. But we're sure here for you if you have questions, so please tell us how we can help.

Gentle hugs,
Binney

Linda-n3

Thanks so much for your replies and support. I DO have a lot of anger and fear and am very resistant to acceptance of yet more disability. I know that my initial response to almost ANYTHING is "NO!", much like a child would say. So I recognize that, then try to get past it and get on with things.



I have actually used a glove over my bandages to keep them clean, but it is VERY annoying!!!!



I had a 20% increase in volume, which came down only to 17% in 2 weeks. That does not seem like it's very much or very quick, although the LE therapist seemed to think it was fine. Any encouragement on this? Is this about the usual? I am trying SO HARD to do everything right and doubting myself every time I wrap - am I not snug enough? If I make it too snug, I get more swelling in the hand and fingers, am trying to make it a gradually changing compression, more compression distal, less compression proximal, and have tried to pay attention to how it feels when the LE therapist does it vs. when DH does it. But the one LE therapist has bandaged me so tightly that I had so much pain, had to take pain meds, and finally had to have DH re-wrap. The other one I see (they work as a team) wraps a little easier, I have NO pain when she does it.



How much time do you spend doing self-MLD? I am trying to get in 30 minutes twice a day, but not all that successful yet. I do sit with arm over head, watching TV since I can't do much else fun stuff. Mr Bean at least brings some belly laughs, and I think probably good for the deep breathing part!



How much $$$$ do you all budget for all these sleeves and garments and gloves and gauntlets? It seems prohibitive. My insurance will pay for out-of-network prescription things once I have met the large deductible, which I nearly am with the first round of sleeve, adjustable sleeve (yes, it is with velcro, and can be used to sleep in, which I thought would be much more convenient than wrapping) and gauntlet. Do you get a prescription from your doc for these? Some of you have mentioned OTC - I think that was probably on the other thread, All Things Sleeves & Gloves, so I will ask there as well.



My fingers are pretty close to normal, but I am wrapping them anyway just to keep them from swelling up again. Just can't seem to get the hand swelling down, so would the glove or gauntlet do a better job? I will write all these questions down and ask my therapist tomorrow!



Embemma, we can hang in there together through this! I really get all the grief stages at one time!



Thanks again, especially Binney and Purple and Kira and Dulcigirl. You have helped me attain at least a few moments of peace tonight.

purple32

Embemma

 You make a very good point!

  We are all so  different.  I had to immerse myself in LE info to get a  feeling of control ( although it really was just a ' feeling')  Others will want to take it in much more slowly.  Either way, all any of us can 'do' is one day at a  time.

Linda

I know my reaction was (is) the same as yours.  VERY typical in these cases.  IF you trust your LEist (you can always seek a 2nd opinion) I would think that % volume reduction is good FOR NOW, but hope/expect more. We are all VERY different. I jst dont think there is a 'typical' really.

  I do not wrap, but I do know it should not be so tight as to hurt, that's for sure.  My ins co,. did not have place  that sold sleeves  covered 100% so I ended up calling one of the DMEs for Respiratory Infusion Therapy who sold compression stockings  (My ins.  covers this DME  Co. at 100%) and  I made an appt and asked if they would order sleeves.  They said yes!

Plan for a ' daytime sleeve' to last app. 4-6 months time .  Ideally, you should wash daily.

I did suggest an IMAK ACTIVE ( www.amazon.com) just to have as  a spare glove or until you can get a new Rx one that you like the fit of.

ALSO- my ins did not want to cover my Farrow glove ( at 80%) because they said they do not cover internet orders.  I told them I ordered by phone  (TRUE) through a (virtual) catalogue at www.brightlifedirect.com and they reimbursed me 80%  since it is out of network. Thats okay.   It stinks to have to haggle this way, but we do need garments and the more the better, I say ( for being able to have things clean and ready!)

Hands are tricky and it is tough to say if wrapping or a glove would be best.  I think a real ' expert" (LEist) wrap might prove better than a glove, but if I ( as a total novice) were to wrap , I would expect better results from my Farrow until I really learned. Still, we are all different so I am afraid that just may be trial and error. (Sorry-  I hate hearing that phrase when it comes to LE...)

Also- I pay out of pocket for my LEist as  the two big area  LE clinics I went to did not perfom MLD on me.

It does add up so get all you can from your INS!
Hope this helps for now.

Anonymous

Embemma and Linda big hugs to you both. This is a great place to come and vent and get advice etc etc. I SOOO hear you Embemma about this being a part time job....I was thinking more in line with full time ....

I can't add much to the excellent advice already given, but just to say hang in there from another one whos recently had a severe roller coasrer ride with this LE drama and all it's side kicks.

I was soooooooo angry the other night because I wanted to spare hubby from all the help he was already doing, and wanted to measure myself. I could manage the arm circumferences but NOT the length of the arm. Well the angrier I got the more determined I got and that escapade ended up with me in tears. It took me an hour!!! IRRRRRRR.

After all my complaining and so forth, the thing is it CAN be done. That is, I have had success with wrapping. I saw the improvement WHEN I DID IT RIGHT, which I managed to do quicker than I thought. The other side was when I didnt do something right I ended up with big lumps of swelling in weird places on my forearm. It is important to do this job right, but practice is the only way to really get there.

Most people are utterly CLUELESS about LE.

kira66715

Linda, a wrap should NEVER be painful. I had my first LE therapist wrap me so tightly that I became nauseated from the pain. There have been studies of wraps, and lower pressure works better.

I actually took the LE therapist training, and they pushed a tight 3 bandage wrap in class, and one of the PT's almost fainted. I showed them how my LE therapist wraps me--she rolls on bandages over lots of padding--and I use gray foam to cushion my hand, with a piece on the top and one on the palm--and she puts only enough stretch on the bandage to lay it on smoothly, and adds more bandages if she needs more compression. It's actually comfortable.

I have issues with my hand, and the gray foam cut outs are essential for comfort and swelling reduction. There is an overwhelming, comprehensive document, the International Best Practices, and it shows how to make the padding--there's a link on the home page of stepupspeakout, just under the international documents:

http://www.stepup-speakout.org/

here's another link to get the pdf:

http://www.woundsinternational.com/clinical-guidelines/best-practice-for-the-management-of-lymphoedema-an-international-consensus-english-language-edition

Check out the foam cut out on page 38 (and ignore all the gross pictures)

And yes, LE is expensive!

Jwright

I posted on another thread about the dangers of pumps. The pump ordered for me was $5000-6000 model. After 2 yrs of a mystery illness, high BP (resting heart rate was 114-120), severe breathing problems, extreme fatigue, nausea, recurring cellulitis, sores on my chest, I discovered from a new PT that the pump was overloading my heart. Now I have a stack of Dr bills I can't pay and have been unable to work. The frustration of not knowing why I was sick was worse than enduring cancer treatments. I found this forum to tell my story and see if there is anyone else out there who has experienced this nightmare. After discontinuing pump use, my health has greatly improved.