Just diagnosed. Advise please!

Janet_M

Hi there ,

My surgeon diagnosed me last week with lymphedma, and is sending me to a clinic. But until then - I have a sore arm and a puffy hand. I'm not going to the clinic till next week, and am afraid of swelling up like the elephant man. My surgeon said it's a mild case - but still....

He recommended I keep my arm elevated when possible, and keep excersing. But I have a whole bunch of questions that I never asked. For instance, is it bad to put weight on my arm, as in push-ups? Do I avoid heavy lifting? Will my hand be puffy forever? How often should my arm be elevated. 

Any advise is appreciated. I finished radiation in May, so I was hoping I was out of the woods. But now I'm scared all over again. And a bit pi*ssed off, too.

Thanks,

Janet

Marple

Janet,

Your surgeon is partially correct, elevate your arm as much as you can but as for exercise, I'd say not until you speak to someone at the clinic next week.  Drink lots of water to stay well hydrated and check out this web site where there is lots of lymphedema info posted by very knowledgeable ladies.   http://www.stepup-speakout.org/  The fact that you are addressing the problem early is in your favour.  Just be easy on your arm until your appt.  Hugs and good luck. 

Binney4

Janet, phooey! I'm really sorry you've had to join our "swell" sorority, but you're starting early which will make things easier to manage on-going.

I'm with Marple on the exercise issue--not until you're in treatment. And definitely not anything weight-bearing for now either. That may be something you can ease into later, once this is in good control, but for now, just give it a rest. Here's information about steps you can take until you can see the therapist:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while waiting

Stay really well hydrated, elevate whenever possible, lots of pauses to take a few deep abdominal breaths--and please tell us how we can help!
Gentle hugs,
Binney

carol57

Janet, Ditto on the great advice from Marple and Binney. I just want to say we are all PO'd about getting LE, so you have lots of company here! Also, for some encouragement, you will most likely be able to chart a path to exercise again with guidance from your therapist. Many, many of us have reclaimed our active lives after LE. Sometimes we modify exercise, but mostly we do what we love. Stay positive if you can!



Carol

Janet_M

Thank you, thank you!

I really felt as though I should be doing something pro-active about my hand, and was feeling helpless this weekend. I just went for a theraputic massage, and the masseuse was quite knowledgable about lymphedema and told me about the belly breaths - but she didn't mention hydration so I really appreciate those links. 

This morning I was at yoga, doing a downward dog and looking at my puffy hand wondering ' Should I be doing this?' and I guess the answer is no. 

I'm also concerned abou having to wait two week for an apppointment. That'll be the first thing I address tomorrow morning. I feel like I've done a few things that need correction. Carrying heavy bag, letting my dog (basset hound) pull me down the street.

Funny that this never came up sooner with my Doctors. Or, maybe it did, and I just didn't listen. Rats.

Janet

Marple

Janet, you are right, NO to downward dog for now.  And NO to doggy pulling on the leash.  And NO to carrying the heavy groceries, for now.  Many Drs. are not even apt to bring up the subject so the fact that your surgeon at least noticed or paid heed to you noticing it, is a feather in his/her cap.  And a feather in yours too for being proactive.  Hopefully this will turn out well for you.

Marple

P.S. If you are able, prop your arm up on pillows when in bed. 

hugz4u

Janet, try sticking up your arm straight above your head and slowly pump your fist. Try about 20 or 25 fist pumps. However if you have any pain stop right away. Fist pumping like this will help drive the fluid away from your hand. Keep us posted.



No hot tubs, sauna, hot baths. No weight bearing exercise on the arm for now, not even lifting a jug of milk. Hang on and we will get you thru this, We are your support team and know more than most of docs on this LE stuff.

hugz4u

Janet, Watch for any soreness or funny feelings in the breast and trunk on your swollen side. Many of us have truncal LE also which docs know even less about. When your nodes are taken out it can affect your whole quadrant on the BC node out, side. Also your lymph system can be sluggish and LE can kinda jump to the other uninvolved side. It is all a crap shoot, but you are the smartest to be proactive before you progress.

Don't want to scare you, just educate, so you are watchful. Take care.

Janet_M

Thank-you again for the advise. And especially for the moral support - I feel much better with a support team.

Slept last night on a sea of pillows with my arm fully propped. And, it was surprisingly comfortable. I will use my time in traffic to pump my fist. (Maybe other drivers will wave back) and as for a jug of milk - I don't even think we have jugs in Canada.

Thanks for helping me get through the weekend calmly, and knowledgeably. I really appreciate it.

Janet

purple32

 I will use my time in traffic to pump my fist. (Maybe other drivers will wave back)

hahahahah!
Good one, Janet, I can tell you dont live in my neck of the woods - other drivers would be shaking their fists back ! 

Take Care .

hugz4u

Janet, Oh that's cute! Yah,in canada we are the friendly sort, so people would think you are waving. I do fist pump in the car but I can only get so high up and really the best is if you can get your arm straight up in the air. But when you are stuck in traffic and your LE needs some movement this will be better than nothing! Just please keep your eye on the road. I usually do it at a red light and my headrest hides what I am doing from behind. As for the driver next to me in the other lane, I usually don't give him eye contact. if I did then I would flash a smile cause that's what us corny Canadians do!



We do have jugs of milk here and I hate carrying them with a passion. Someone said they are 8 pounds each! Yikes!

Janet_M

Thanks for tipping me about doing fists pump straight up in the air - I'll make sure to do that. (And milkjugs? Really? I can't recall anything but cartons and bags)

The good news is that I managed to get my appointment bumped up a month, so I'll be going to the lymphedema clinic tomorrow. Everyone was commenting on early detection, so I phoned the clinic and asked why they would promote early detection, and then make me wait a month to see a specialist. I managed to track down the girl who does scheduling, and she managed to get me in on Wednesday. So relieved....

Marple

Great news Janet.  Good luck.

BeckySharp

Great for perservering Janet!  Good luck on Wednesday.

lago

Janet good luck tomorrow. Just want to tell you that many of us do fine once we get treatment and take care of our swell. I do wear my sleeve daily but take it off around 5pm per my LE MDs orders. I do strength training now too. Your physical therapist will explain how and what to do but you will go slowly. My arm doesn't appear to swell anymore now that I wear the sleeve and do exercises.

It's been almost 2 years since I was diagnosed and I'm doing fine.