Swelling of the hand - lymphedema?

Sher, it sure sounds like lymphedema. Lymphedema is a moving target--it changes over time. There was a study by Andrea Cheville from Mayo, and the biggest risk for getting more sever LE was having mild LE.

So, if your therapist thinks you're at risk, why isn't she teaching you how to wrap? Therapeutic exercise? And getting you compression garments?

We need all our tools to manage this.

While you are looking for the second opinion, you might want to contact her and let her know that your hand is acting up.

MLD is the least proven modality in LE treatment, because we all do it differently. Compression garments are proven, wrapping is proven.

There are light compression  gloves from isotoner, and we have links to them on the stepupspeakout website.

Good luck

Kira

This "what to do while waiting" has links to the compression gloves-but they're a stop-gap measure while you get a properly fitted one from your therapist.

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting 

Kira 

My swelling starts in my hand.  If you get a compression garment, make sure it's a gauntlet and not just a sleeve.  I started with a sleeve only and it seemed to trap the lymph in my hand and made it worse!  Anyone at risk should start wrapping as a preventative.  I think that's what has helped me a lot, starting early before it got too bad.

I have found a shortened version of massage helps a lot -- I do it, and a shorter version than yours! 

Sher, good morning,

Several years ago the research group at the U. of Arizona did a small study of MLD and found that the most effective single component was the node clearance. It was not as effective as full MLD, but more effective than JUST doing the arms without clearing the nodes. So they tell patients to do that part several times a day. The effectiveness of MLD, especially as done by patients, is variable: we forget things, or use too much pressure, or skip it for several days in a row, or generally don't have the experience to tell which areas may need more attention than usual like a well-trained therapist would. Norton School-trained therapists don't encourage patient self-MLD because as a group we're sort of undependable. But if you learned it well and do it attentively it can be a huge help with self-management. And once you learn it, it also helps to recheck your routine with your therapist from time to time so she can see if you're still doing it correctly.

I too use a somewhat shortened version, but I can't skip chest and side because those are the areas that are hardest for me to control. And I clear nodes before showering or putting on lotion, then gently wash, dry, and apply lotion in the direction and order of the masssage. For me, that's very effective, but we're all different.

We do all have to work out a self-care routine that works for us, and I think it's really important to have a therapist you can be honest and straightforward with, and not have her (or him) put you down. A good therapist has to be realistic too -- it's not just us patients who struggle with denial!

(In all fairness, of course there are those who simply won't carry out the things they need to do to manage their LE -- also their choice, but no therapist will continue treating someone who doesn't care to do their part.)

Just as wearing a sleeve without hand protection can trap swelling in your hand (bummer, Elizabeth! That happened to me too) wearing a gauntlet instead of a glove can trap fluid from your hand in your fingers, so do be careful about that.

Oof! Side effect indeed! In terms of self-management, LE is a whole production in itself!

Hugs,
Binney

Sher, I find that new swelling can make my skin feel tender. The slight reddening is more worrisome, though, for cellulitis, so keep a very careful eye on that. If the redness spreads, if there's any pain or warmth to the touch or itching or fever, high-tail it to the ER, yes?

So sorry, Sher! Keep us posted. Be well,
Binney

Aw, Sher, I'm sorry!

No need to panic if your appointment is only three days away. Elevate that arm as much as possible -- always supported, though, so you don't strain it. Stay out of hot water. Stay well hydrated. Don't wear garments of any kind if you aren't sure of the fit -- could do more harm than good. Rent a couple of funny movies to take your mind off it for now.

And quit beating yourself up!

Facing off with this is tough. There's no way to be prepared for it until you actually have to deal with it, and you're doing great! Stay loose and look forward to Thursday -- it'll be good!

Real gentle hugs,
Binney

Sher, may I second the quit beating yourself up part--I do it all the time, and then frantically email Binney for help. She is infinitely kind, but I wish I wouldn't panic and get so upset, and blame myself all the time.

I have to say, that we do the best we can with the information available to us, and there is no blame here.

I work in health care and have issues with wearing my gloves while I see patients--but after a long struggle (mentally) I'm getting ready to wear it while I work in my office. It feels like a stigma to me, and yet I don't want my hand LE to suffer from my work. Tough balance. 

Here's a great information page on lymphedema,written by Jane Armer PhD, and she says "no one is to blame"

http://www.livestrong.org/site/c.khLXK1PxHmF/b.2662233/k.43DE/Lymphedema_PrinterFriendly_Format/apps/nl/newsletter.asp 

Kira 

Sher, I hear you -- hygiene is an important issue, and not easy to handle with the wrapping, or even with gloves and sleeves. This page has suggestions on such things as your emotions with LE, getting through the day with a wrapped arm, some hygiene suggestions, self-consciousness in public, and lots more.  The vet gloves under "Getting through the day with a wrapped arm" may be really helpful for the issues you're concerned about.
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm
As you find ideas that work for you, Sher, do share them with us and we can add them to our common knowledge base.

Here's another page about wrapping that might give you some ideas (and maybe some more questions, too!) about the therapy process:
http://www.stepup-speakout.org/wrapping_bandaging_for_lymphedema.htm

The mistake I made when learning to wrap my own arms was in thinking it should be as easy as the therapist made it seem -- NOT!!! Besides her years of experience and practice, she gets to use two hands and I have to do it with one -- and when I wrap my right (dominant) arm, I even have to do it with the "wrong" hand. Very clumsy -- very maddening. What I didn't know was that I could take my own sweet time, both to learn it and to do it. Arthritis is a (literal!) pain, but as long as you're giving yourself time and room to do this, it's definitely something you can accomplish. Now when I have to wrap I set myself up to succeed by cutting the tape first, arranging everything in order, laying the instructions handy in case I forget something, and doing it seated in the middle of my bed so if I drop a bandage roll it doesn't hit the floor and unroll. I plan plenty of time in case I goof up and have to rewrap a gauze roll of bandage, and I make myself relax before I start so I don't get frustrated and find myself wrapping too tight. It's fine to pause after each step and give your hand a rest -- nobody's timing us! All that sounds like a lot of bother, but it gets to be second nature. A sense of humor helps!

I'm sorry about the new therapist, btw. Having trouble getting your questions answered is more than a "personality thing," because this is a long-term relationship and we have LOTS of questions we need to feel comfortable asking. 

You can do this, Sher! And we're all here to cheer you on.
Big gentle hugs,
Binney

Sher, I don't know about the vet sleeves price, but I just wanted to say that this stuff is HARD, and being wrapped for days is very, very hard. Perhaps she'll teach you to wrap early in the process so you can take a shower. But the vet sleeve is a great idea.

I hate not being able to wash my hands. 

I wrap nightly, and recently I had a flare and my LE therapist had to gently do a remedial wrapping session, and teach me again that too much pressure is a bad thing.

It's a long term relationship and you have to feel comfortable with the person.

I have an LMT who has been with me from the start, and she keeps making me make PT appointments, and I've met some doozies: set your goals! Try, get my LE under control.

150 sleeves for $25 dollars seems reasonable. I used to watch the horse vets put them on and probe all sorts of unmentionable places.

Hang in there. We're here and we care and it does get better.

Kira 

Sher, during the intensive phase of CDT, they do keep you wrapped 24/7, with a break for a shower, and it's variable how long that lasts.

Showers are very important to me also.

Hopefully the intensive phase won't last too long and the therapist can address your need for hygiene and also, what if you get discomfort while wrapped?

This will pass, as MOTC wrote to me when I was really unhappy about my LE--in my hand--last week.

Kira 

Sher, I'm going to ask Binney to respond--personally I don't think you should be in any pain: it sounds like there's a pressure spot on the outside of your hand. Hopefully it will get better as the hand shrinks down, but I'd check in with the therapist tomorrow, because you don't want bad chafes.

Are the tips of your fingers okay? Not too cool or dark purple?

The bend of the elbow can be tough.

I was just talking to my LE therapist about another therapist's wrapping that was so tight it made me ill, and she doesn't ascribe to that theory. She creates more pressure through more layers. Her argument is that the superficial lymphatics are delicate and near the surface of the skin, and pain is a sign that they could be being harmed.

Let's ask the expert to weigh in.

Kira