Sleeve causes swelling? How often to do manual self drainage

nowords

I finished 30 days of therapy and my arm came down; was fitted for new medi sleeve and glove and night garment. Arm went back up in two weeks to original swollen size when I went to one day a week for PT. I do the MLD at home, a.m. and p.m. and the exercises...After a week with the new sleeve, deep ridges at wrist and top of arm...hurts to wear it.......sleeve support of arm itself feels good...hand swelling now and I did not have too much trouble with that on daily basis prior to wearing the garments all the time...

Am I not doing enough, doing too much? Ugh!!!!

kira66715

Nowords--this totally stinks! Something isn't working with this situation--poorly fitted compression can trap fluid, and the therapists swear by wrapping as opposed to night garments--it sounds like your therapist needs to reassess you and figure out what isn't working. Personally, I wrap because I just can't get a night garment to do the job for my hand. And I resent it, but I do it.

Also, as the weather is getting warmer and humid, I'm feeling it.

I have hand swelling, and it rots. 

It sounds like you're super compliant: MLD and exercises twice a day. This swelling isn't due to lack of effort on your part--

I'm wondering if the compression garments are not fitting you well. 

Time to reassess the situation. 

Kira

Nordy

I second what Kira said - and it makes sense that your garments aren't fitting you now since they were probably fitted when your arm was down, but now that it has returned to its original pre-treatment size, it makes sense that it is too small. I also agree on the night garment thing. I was doing a study with Solaris and the Tribute - so far it has not worked for me. They have it back at the shop right now because I had trouble with the hard pieces of foam leaving red (and one white) pressure marks in my hand. The Jovi pack is better in that respect, but they did not make the hand piece long enough and so my finger tips get bulbous when I wear it. Wrapping works the best for me... but yes, it is time consuming and it stinks to have to do it every night before bed... but what can we do? We have to go with what works best for us. I am still hoping that the Tribute will work out... at least for  few nights a week! I would try to get another garment, or at least go back to wrapping and see if you can't bring it down. Just remember not to get too frustrated and wrap too tight! (This is what I used to do... and I KNOW better!!!) It won't help to wrap too tight, and really could potentially harm... so have patience and try wrapping and elevating your arm at night and see if that won't help bring it down. I am sorry you are having to deal with this... Like Kira would say - it "rots"!

Binney4

Nowords, how frustrating! (Well, actually, when something like this happens to me it's more than frustrating -- I get panicky). This sounds like possibly a poorly fitting garment. Have you seen the StepUp-SpeakOut garment fitting page, and checked the fit with your therapist?
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

But there could be other causes as well. A new activity, maybe, that stressed your arm? Or some travel? Ham, pizza, potato chips or anything else real salty? A weather front moving through? Change of altitude? Leaning your arm/hand on a table, scrubbing the floor with that hand supporting you, or sitting on the floor with your arms/hands gripped around your legs?

Do you know how to wrap your hand and arm yourself? (If not, insist on it.) I usually wrap my arm and hand as soon as I notice it's starting to swell, and if I act quickly enough it doesn't take more than a day or two to bring it back down again. (Makes me mad to have to do it though!)

With your arm swollen again your garments won't fit well anymore, even if they did at first, so maybe not wear them again until you can get help from the therapist to see that it's improving. The deep marks at wrist and top band aren't a good thing and can make everything worse. Elevate, stay hydrated, and take it easy with your arm until things begin to improve. 

Please keep us posted. Hugs!
Binney

OmaRoo

Does traveling to a higher elevation make lymphedema worse?  I live in west Texas, but we are going camping in northern New Mexcio this summer.  I am already concerned about the heat, but hadn't thought about the elevation.  How much effect do you think it will have?

 I have early signs of lymphedema with slight swelling, pain, and feel like I am actively trying to fight it off with MLD and exercise.  A compression sleeve and glove have been ordered, but I don't have them yet. 

kira66715

OmaRoo, sorry this got overlooked--higher elevation can trigger swelling--it's why compression sleeves and gloves are recommended on planes.

So, the key would be to get your sleeve and glove for use when traveling, and wear them in the car and at the higher elevation as needed.

Is your lymphedema therapist teaching you how to wrap also--it's a pain, but an important skill. 

Here is the link to the National Lymphedema Network positon papers--on flying, treatment, etc

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

More and more studies are showing that early treatment of lymphedema can prevent progression, so good for you to be on top of it. So many women blow off "slight swelling" (and so do their providers.)

Sorry for the delay in replying. Hope you have a great trip.

Kira

OmaRoo

I have not learned how to wrap yet.  The OT only suggested starting with the sleeve and glove.  If I get any worse I can get a referral to go back to her for more help.

 We will be driving to New Mexico, so sounds like a good idea to wear the sleeve as we are headed that way.... adjusting to the change of elevation.  The nights and mornings are very cool where we will be.... but hot during the day.  Not so bad in the shade, which is where I plan to spend my time. 

 My son called last night and he is very concerned about my arm & the heat.  Both our grown kids/ and spouses/ and 2 year old granddaughter will be joining us.  This trip has been planned since long before my diagnosis.... but of course, we could change plans.  

 I am not sure what to do... because I don't know if I am supposed to "baby" my arm for the first year (in particular) or if I am just supposed to go live my life as usual & just take reasonable precautions. 

 I know there are no set answers, but there are so many of you who have had more experience with this.  I do appreciate your input.  Thanks!

kira66715

OmaRoo, if you have early lymphedema, you need to keep an eye on the arm, do the MLD and wear your sleeve and glove in situations where you might swell.

You need to live your life.

With lymphedema, it really varies how much we each need to do to keep it under control, but it's a learning curve and you'll figure it out as you live your life. Sometimes there are limitations, but with close observation of your arm and symptoms you'll figure out what you can do,  and if there's anything that it's just not worth the swelling.

I know it's really vague, but I hope that helps a bit.

Kira

OmaRoo

I posted the following somewhere else, but haven't gotten any replies.  Thought I would try here.  I'm not sure that I am explaining it very well.... but I'll give it a try.  I know the "dog ear"  fills with fluid at times,...also at the front of the arm pit. BUT now it feels like there are little pebbles in there. Anyone else have these?  They are small and feel kind of loose.  Sorry, that's not a very good description, but not sure how else to explain it.  Not sure if I should be massaging them, ignoring them, or what?!

 Any ideas what they are?

BoobsinaBox

OmaRoo,

I don't know, but you've waited a long time for answers.  Have you checked with your LE therapist or one of your physicians?  My first thought was maybe it was lymph nodes that were swollen, which they do when fighting infection.  Any signs of any kind of infection?  I hope Kira will be along again soon with better answers than I could possibly have.  Thinking of you.

Dawn 

Binney4

OmaRoo, I'm not sure what kind of swelling you're talking about. Is it a seroma or lymphedema? If it's lymphedema, do you have a well-trained lymphedema therapist helping you get control of it?

As for the lumpy things you're feeling, for sure don't ignore them. Have your doctor check them out for you, so you'll have answers and will be able to get a handle on that and the swelling both.

Please do keep us posted on your progress.

Gentle hugs,
Binney

OmaRoo

 I just learned a new word!  I had never heard of a seroma.  I had to look it up to find out what it was.  It sounds like that might be what the swelling on the side is.... because it seems pretty localized.  Not sure about the lumpy feeling.  I have an appt with the doctor in a few weeks, so maybe she will know.

   It has been awhile since I've seen the lymphema specialist I do have some problems with my hand starting to swell & arm gets painful.  I got a compression sleeve and glove... but haven't worn them much yet.  My arm and hand seem to hurt more when I do housework, or when I walk outside when it is HOT.

 This has been a very slow learning process..... but at least I am learning : )

Binney4

OmaRoo, do let us know what you discover when you see your doctor. In the meantime, if your lymphedema therapist is well-trained and you feel she (or he) is on the ball, you might want to set up a time to see her again. With the swelling and heaviness in your arm you do want to get on top of that right away, because lymphedema is staged (like breast cancer is), and without good on-going care (by the therapist and you working together) it will progress -- which doesn't necessarily mean more swelling, but it does mean hardening of the tissues and increased risk of serious systemic infection.

Please take good care of you!

Gentle hugs,
Binney

OmaRoo

Thanks... that's helpful info!  And yes, I'll let you know what the doc says.