Lymphedema still not under control

cavediver

The lymph specialist finally decided I would have to have the wrap therapy to move the fluid out of my arm. Well, after the 2nd day my fingers swelled up like little balloons and were extremely painful (had to take pain meds)!! After 5 days, my arm is normal size (Yeah) but hand and mostly fingers still retain fluid. So, the daily wrap therapy continues for another week. I look like a Mummy....ready for Halloween for sure. Once they get the fingers cleared, I will get measured for a custom glove and sleeve....was told I will have to wear it daily and another one at night. Oh joy....guess I will not be able to hide this! As many of you know, I did not go public with having cancer with extended friends or business associates......but the sleeve thing and glove... I will not be able to hide and eventually I have to be seen! But, at least the worse is over...no more chemo and 1/3 of rads completed!

CypressCynthia

I am so sorry that you have
I am so sorry that you have the lymphedema to deal with along with the cancer. You are in my thoughts and prayers. 2 questions: Are you keeping the arm and hand elevated? and Have you asked about physical therapy? PT has saved my butt quite a few times so I am their biggest fan. But I have had to ask for PT with each problem (frozen shoulder, sciatica, etc). Each time the doc says "oh yeah let's try physical therapy too." Geez, you think they would say let's try pt first! And, my disclaimer, I am not a PT and do not have any blood ties who are ;-)

Marcia527

I did not have lymphedema
I did not have lymphedema but did see a PT that was a specialist for lymphedema for frozen shoulder. They teach self massage and exercises that help. When you choose a PT made sure they are specialists in lymphedema. Good luck!

cavediver

manual self msg. did not work
The Lymph specialist is at the PT center.... she is very knowledgeable. The manual self massage did not work....and even with arm elevated most of day and at night....fluid kept building up. Had sleeve and glove and still a build up... so the "wrap" step is in progress...it is used for extreme cases only....I am so lucky to be in that small percentage! I have discovered just like chemo side effects, we are all different with the lymphedema and our bodies react differently. Just hoping they can get the fluid to stay out of my fingers and hand, so I can go forward.........

Marcia527

cavediver said:

manual self msg. did not work
The Lymph specialist is at the PT center.... she is very knowledgeable. The manual self massage did not work....and even with arm elevated most of day and at night....fluid kept building up. Had sleeve and glove and still a build up... so the "wrap" step is in progress...it is used for extreme cases only....I am so lucky to be in that small percentage! I have discovered just like chemo side effects, we are all different with the lymphedema and our bodies react differently. Just hoping they can get the fluid to stay out of my fingers and hand, so I can go forward.........

Aw, why can't it be simple?
Aw, why can't it be simple? Why can't we have a cure for everything. Hope something brings relief.

New Flower

Marcia527 said:

Aw, why can't it be simple?
Aw, why can't it be simple? Why can't we have a cure for everything. Hope something brings relief.

Hi
I have been wrapped on and off for more than 12 months now. It is not fun, but you can function with it. I am sorry that you have to go thought it. Self-massage has not helped me to the extend I want.
Hugs,
New Flower

DianeBC

Marcia527 said:

I did not have lymphedema
I did not have lymphedema but did see a PT that was a specialist for lymphedema for frozen shoulder. They teach self massage and exercises that help. When you choose a PT made sure they are specialists in lymphedema. Good luck!

I didn't get lymphedema,
I didn't get lymphedema, but, am so happy to know yours is under control.

And, congrats on being 1/3 done with rads!


Hugs, Diane

CypressCynthia

cavediver said:

manual self msg. did not work
The Lymph specialist is at the PT center.... she is very knowledgeable. The manual self massage did not work....and even with arm elevated most of day and at night....fluid kept building up. Had sleeve and glove and still a build up... so the "wrap" step is in progress...it is used for extreme cases only....I am so lucky to be in that small percentage! I have discovered just like chemo side effects, we are all different with the lymphedema and our bodies react differently. Just hoping they can get the fluid to stay out of my fingers and hand, so I can go forward.........

Oh shoot, I am so sorry. I
Oh shoot, I am so sorry. I wish I could take this away from you. Praying that the wrap will work and you will feel better soon!

Wolfi

Lymphedema sucks.
Sorry to hear about your continued problems with lymphedema. Although mine is considered "mild" there are nights when I wake up in pain with my fingers and hand so swollen I can hardly move them. I was just at my onc and he said I need to see a PT again and get a sleeve for my lyphedema (have had a glove for quite a while but now it is affecting my whole arm).

Don't worry too much about going public with the sleeve and glove - winter is coming and long sleeved sweaters and jackets can probably hide your lymphedema sleeve. Don't feel like you have to explain to extended friends and business associates why you are wearing a glove or sleeve - tell the people who you want to know and forget the rest. If they ask - they are being rude. If you only have a glove on one side you can always say you are trying to start a movement to bring back the 1980's Michael Jackson one-glove fashion. (I always loved his music but never quite understood some of his fashion choices.)

:-)

Take care.

fauxma

Wolfi said:

Lymphedema sucks.
Sorry to hear about your continued problems with lymphedema. Although mine is considered "mild" there are nights when I wake up in pain with my fingers and hand so swollen I can hardly move them. I was just at my onc and he said I need to see a PT again and get a sleeve for my lyphedema (have had a glove for quite a while but now it is affecting my whole arm).

Don't worry too much about going public with the sleeve and glove - winter is coming and long sleeved sweaters and jackets can probably hide your lymphedema sleeve. Don't feel like you have to explain to extended friends and business associates why you are wearing a glove or sleeve - tell the people who you want to know and forget the rest. If they ask - they are being rude. If you only have a glove on one side you can always say you are trying to start a movement to bring back the 1980's Michael Jackson one-glove fashion. (I always loved his music but never quite understood some of his fashion choices.)

:-)

Take care.

Cavediver,
So sorry that the
Cavediver,
So sorry that the lymphedema is causing you these problems. My sister has had a tough time with it and is considering this step also. I will keep you in my prayers and good thoughts that this helps to resolve this for you.
Stef

Gabe N Abby Mom

So sorry you have to deal
So sorry you have to deal with this along with everything else. I hope the sleeve and the glove work!

Hugs to you,

Linda

cavediver

wrap working for arm...hand & fingers the problem
they have to figure out some way to get the fluid out of my fingers and hand so they can fianally measure me for a custom glove, If I put just a glove on, the swelling goes down, but as soon as they do the wrap on arm it goes up in hand...and when they wrap the hand it goes into fingers. Kind of like the traffic is going the wrong direction from the wrist down. My arm looks almost normal when they remove the wraps to replace. So, getting the traffic to go in correct direction from wrist down is the challenge now. But, no one ever said anything about this is going to be easy! After over a week of wraps, I am looking forward to just a sleeve and glove in the future....hopefully!

Angie2U

cavediver said:

wrap working for arm...hand & fingers the problem
they have to figure out some way to get the fluid out of my fingers and hand so they can fianally measure me for a custom glove, If I put just a glove on, the swelling goes down, but as soon as they do the wrap on arm it goes up in hand...and when they wrap the hand it goes into fingers. Kind of like the traffic is going the wrong direction from the wrist down. My arm looks almost normal when they remove the wraps to replace. So, getting the traffic to go in correct direction from wrist down is the challenge now. But, no one ever said anything about this is going to be easy! After over a week of wraps, I am looking forward to just a sleeve and glove in the future....hopefully!

So sorry cavediver that you
So sorry cavediver that you have lymphedema. I am lucky and never got it, or, not yet anyway. I think someone said it can happen at anytime.

Good luck!


Hugs, Angie

cahjah75

Cavediver
I'm sorry you're having so many problems with the lymphedema. I have not had any and can't imagine what you've been going through. I remember when you said you had not shared with others about your cancer. I hope you will feel comfortable going out with the sleeve knowing that others may wonder..... You'll be fine :-)
{{hugs}} Char

Rague

cavediver said:

wrap working for arm...hand & fingers the problem
they have to figure out some way to get the fluid out of my fingers and hand so they can fianally measure me for a custom glove, If I put just a glove on, the swelling goes down, but as soon as they do the wrap on arm it goes up in hand...and when they wrap the hand it goes into fingers. Kind of like the traffic is going the wrong direction from the wrist down. My arm looks almost normal when they remove the wraps to replace. So, getting the traffic to go in correct direction from wrist down is the challenge now. But, no one ever said anything about this is going to be easy! After over a week of wraps, I am looking forward to just a sleeve and glove in the future....hopefully!

The way the wrap was done
The way the wrap was done (and I was taught to do it) starts with the fingers/thumb to the edge of the nails first then up the hand, wrist, forearm, elbow and up the upper arm with 3 different types of bandages used over each other. Hopefully your first sleeve/glove combo will be the right combo for you. My first was horrible - my Lymphemologist ordered the highest compression - it only made it much worse within an hour of being on. For me, what seems to work the best is low compression when I'm just 'bopping around' but medium when I'm doing 'heavier stuff' (remember that my 'heavier stuff' is heavier 'work' than most do - buckin' hay, shoveling manure, etc. LOL).

I use an Isotoner (sp?) glove that is made 'inside out' (so seams are to the outside) for extremely low compression with my night sleeve. Some night sleeves include the fingers but mine doesn't (only goes to knuckes) so the Isotoner gives a little bit of compress through the fingers.

Another point - sleeves/gloves can be gottten in a lot of colors. Another thought - if your sleeve is custom made - the silicon band at the top that can be added keeps and the top a lot more comfortable as it doesn't 'roll' - at least for me. All of my sleeves and gloves are custom made as the off the shelf just aren't quite right for my 'crazy' arm and hand - hand espcially - fingers a somewhat 'webbed' sodoesn't allow a standard glove to go on as it should.


Susan