Lymphedema question

This is going to be long so I apologize in advance but I figure you should have all the info in order to (hopefully) give me advice. I was wondering how anyone else has dealt with lymphedema. I have some swelling in my hand and a couple of fingers which the docs have determined is lymphedema. They sent me to a physical therapist. I went yesterday and she told me that even though there is only a 6% difference in size that they have to wrap my entire arm and I need to leave this on 23 out of 24 hours. Okay. She wrapped me and it felt kinda fine there but I'm at the point where I can barely move my arm. AND my fingers are more swollen right now than they were before.

Let me back up a bit. The other night I moisturized my hands and put on some cotton gloves when I went to bed. I'm sure some of you have done this for badly dry hands. Anyway, I woke up yesterday morning and my fingers and hand almost looked normal. Then I did a "Walk Away the Pounds" tape and my fingers and hand blew up like a balloon. I went to therapy and she showed me how to wrap my arm and told me that this will reduce the swelling in my arm. I told her that it hurt to bend my arm and she undid some of the wrapping and put in a piece of gray foam which really helped at the time.
She told me to make sure I use the arm. She was very adamant about it and told me that's how the wrapping will help me more. Well, by the time I went to bed I was exhausted because to do anything on the computer, crochet, cook, cleanup was all bending my arm and stuff. It took SOOOOOO much more effort to do things that required bending my arm. Plus any time I had my arm bent it started to feel like I was cutting off the circulation to my fingers. You know that feeling of "whoosh" you get when you've cut off the circulation to an area and then circulation is restored? Well, I kept getting that feeling every time I straightened my elbow. I feel like I'm not coordinated because of how difficult it is to bend this arm. How am I going to put make up on today? How am I going to be able to go to and participate in ceramics today? Not only does the inside crease of my elbow hurt like hell, but my wrist and little finger are killing me as well. Does this sound normal to anyone? Does anyone have any advice/suggestions to make this bearable? What's even more upsetting is that my fingers look worse this morning than they did before I was wrapped like an accident victim.

I'm really aggravated guys. Can anyone give me any idea if this is right or not? Thanks so much.

at the neck, then shoulder area, then upper arm, then elbow area, then lower arm, then wrist, then hand, then fingers, each time massaging very lightly the skin so it moves UPWARD or INWARD towards the heart. >>

Hmm, the technique I was taught starts just below the ribs towards the navel, then cleansing breaths, then neck, armpit,upper chest from middle to opposite of lymphedema side, then from upper chest lymphedema side across entire chest, then side chest, then groin, then waist to groin, tnen armpit to groin, then back of lymphedema arm from elbow up to shoulder, then front side up to shoulder, then back from wrist to shoulder, then underside of wrist to shoulder. then back between fingers to shoulder, then milk fingers, then palm side from finger tips to shoulder, then backside finger tips to shoulder, then stomach stretching from four areas toward naval again, then armpit again. then neck--reverse order from before, the 4 deep breaths.

The massage technique which I was taught was to begin the massage at the neck, then shoulder area, then upper arm, then elbow area, then lower arm, then wrist, then hand, then fingers, each time massaging very lightly the skin so it moves UPWARD or INWARD towards the heart. Basically what you said, but starting at the top of the arm column, not the fingers. It is a very gentle massage and I do it myself, almost subconsciously, while watching TV or whatever, and whenever it aches.

Lorraine, my heart goes out to you. Lymphedema is not any fun. I also have it and have found the treatment to be parydoxical. Some of the treatments used to help control it can actually make it worse, and the recommendations and information given out about it are contradictory. It is so very frustrating at times. I have had two custom sleeves to wear at night. I also have had 3 day-time sleeves, 2 that were custom made. I have also done the wrapping several times. I actually prefer the wrapping because I have found that to be more comfortable, overall, than the sleeves. I should preface that by saying that what I do most often these days is the wrapping but without the finger bandages. However, I did not start out having the swelling in my hand. It started in the upper part of my forearm and progressed upwards. Later I did develop it in my hand and still have that occasionally.
If one has lymphedema, one is told not to wear anything constricting. Well, the problem that arises in regard to that is that the sleeves are constricting--at least the day sleeves--which are made of stretchable material.
I think one may have rubber in it and the other spandex and, um, ? not quite sure what else. When I put it on in the morning it usually fits without any problem, particularly if I have wrapped or worn a night sleeve. However, as the day goes on--even with the sleeve--my arm swells and the sleeve becomes constricting in the upper arm. It gets quite bad--and has a deep groove in that area from the top of the sleeve. So, the treatment--at least in my case--worsens the lymphedema and for me it seems to have been what caused the problem in the upper arm.
As I mentioned I also have 2 night-time sleeves. The first was a Circaid and the next one was a Reid sleeve. Both have something for the hands. I didn't like what the Circaid came with, and I ordered the Reid sleeve without the hand part. The gal who did the measuring for the Reid sleeve was not at all happy that I didn't want the hand part. I did get something to put on my hand that could be removed--also made by the same company. I am not overly thrilled with that and generally didn't use it. The only way to describe it--was it was like my hand was having a mammogram--seriously.
I idid find something that worked by accident. I could also use this with my day sleeves too if needed, although I gnerally don't but don't have a hand problem usually. One day at the gym I saw a gal with an athletic-type glove that had open finger tips--came up to about top knuckle. It is made of leather and spandex and was from a sporting goods store (Big 5). I cost either $11.99 or $14.99 for the pair. I actually got a pair after I lost my very expensive custom Elvorex (Elvorax?) glove (which I hated) which went with the
Elvorex sleeve. It felt so much more comfortable than the custom glove (which also came up to about that height and had open finger tips). One time I misplaced it but discovered that I could turn the other glove inside out and that was more comfortable than the one that was right-side up because the seams were on the outside.
Oh, and that's another thing. I found the first custom Elvorax sleeve uncomfortable because of the seams and the tag. They also left deep groves in my skin. So, for my 2nd sleeve I had the seams on the outside and asked them to leave the tag off.
Still I find wrapping alot more comfortable but do not do the finger wrapping. Again, I usually don't have a problem with my hand. If I do, I wear the sports glove. (I have a 2nd custom glove but don't find it very comfortable.
I am very fortunate. My husband does the wrapping. We videotaped the P.T.
doing. I think he now does it better than the P.T. I just had a thought. If the wrapping is that uncomfortable perhaps it shouldn't be quite that tight. I also use foam in a couple of areas as well. I was still having a problem with my upper arm, though. I found something that I think will help with that. I recently removed some foam shoulder pads from a jacket I had and found that the countour fit quite nicely around my upper arm.
Again, sorry to hear of the difficulty and frustration you are having with this. Interestingly, I recently read something that confirmed my suspicions.
Current treatment for lymphedema is a bit barbaric. The treatment used today was developed a very long time ago--like about 80+ years ago. It's hard to believe that medical engineers have not devised a better treatment. I have read that sometimes surgery can be helpful. Liposuction has been used as well as lasar surgery. Hopefully, more effective treatments for lymphedma will soon be developed!