diagnosed today

Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

diagnosed today

Postby swollen31 » Tue Aug 08, 2006 5:35 pm

I had the pleasure of going to my dr today for my confirmation of primary lymphedema. I knew before I walked in that she was going to confirm the diagnosis. She sent me for some tests prior to confirm if it was anything else, but somehow it just knew. I've always had swelling in my left foot for about 10 years. I injured my right foot 5 months ago and it became swollen and hard so they finally decided to send me to a vascular dr. I have so many questions. Can I still exercise or will this make the condition progress faster. Basically, I was told to wear compression stockings and keep my feet up all day. I am 32 years old and single. It was 100 degrees last week. It's hard to wear pants in the summer. Just ranting and wanting to say hello to everyone.
Posts: 1
Joined: Tue Aug 08, 2006 5:27 pm

Postby patoco » Tue Aug 08, 2006 7:48 pm

Hi Swollen

Super welcome to our family here :!: :!:

Now that you have the "official" diagnosis, the next step is to get you in contact with a certified lymphedema therapist so you can get treatment and learn how to manage the lymphedema.

Please be assured, you don't have to sit around all day long with your feet up, give up on doing everything or give up exercise.

Far from it. With correct management you'll be surprised just how much you can do.

The protocl treatment is decongestive therapy and here is a page of info on it:

http://www.lymphedemapeople.com/thesite ... herapy.htm

Once you read that, let me know and the next step is to contact a therapist.

Very much look forward to hearing from you and in getting to know you too :!: :!:

Swollen, I've had this stuff for over 53 years and it took two lymphomas to slow m down......not the lymphedema.

Take care

User avatar
Site Admin
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Postby silkie » Wed Aug 09, 2006 2:49 am

Hi Swollen

Big Welcome Big Hug.

Pat is right Took 40 years for lymph to slow me down

as you say always new something was wrong I often wonder

if i could have done self care earlier would my problem be less

A good therapist is worth their weight in gold

and they can and hopefully will teach you self care

I love that i can control my lymph most of the time

but that comes at a price. Determination and Regular Daily routine

I think im worth the TLC :D


Silkie xxxxx
User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

excercise is GOOD!!!

Postby wtryan » Tue Sep 12, 2006 1:15 pm

Welcome to teh forum! I'm 41 and have had lymphedema for @ 20 years, but pretty mild until the last 5 years. I am VERY active and I lice in central Florida. The key is to keep infections at bay - you want to avoid getting cellulitis at all costs as it further damages tissues in the leg and make the swelling more permanent and hard to control. By all means wear the support stockings as much as you can and elevate when you can. Excercise is GREAT for you and will keep the fluid moving in your system. You also want to learn specific excercises for your conditiona dn even the massage and breathing to keep your lymphnodes working as well as possible. I have 14 horses, 2 dogs and 4 cats and am always busy riding or mucking stalls as well as taking care of our house and 10 acre farm - it's kept me in good shape and has kept my leg from getting unmanageable. I do wear shorts (but generally wear my stocking or an EZ-band wrap) and I buy wide legged pants because over the years my right leg has gotten big at times. I am currently back in physical therapy (getting the lymph massage done) just to get me back on track (I can get a bit lazy lol).

Anyway, the key is to always use bug spray so that you don't get bitten, try to use Nair or some other cream so you don't use a razor for shaving (although I admit that I still shave my legs), use sunscreen and be careful about getting too much sun, try not to stand in the heat or on cenent too long, don't over-do it at places like Disney World, be VERY careful about swimming in ponds or the ocean - the Atlantic ocean always gives me cellulitis, except in the Carribean (must be the bacteria).

Don't be scared, but don't let it get ahead of you - it IS very serious, so you need to try to AVOID getting too much swelling or heat instead fo trying to fix it when it's there.

I was single and met my husband when I was 27. I had enough swelling in the leg that it was noticeble, and I had bad scars from my surgeries. My husband isa very handsome and kind(and wickedly funny) dark-haired Irishman - he could care less about my swollen leg (other than to be supportive). he loves me for who i am and does not consider me to be handicapped (neither do I!).

Best of luck and welcome - I wish this forum had been around when I was first diagnosed - i would have taken better care of myself early on.
Posts: 9
Joined: Tue Jul 18, 2006 9:02 am
Location: FL

Postby silkie » Wed Sep 13, 2006 2:49 am

Hiya WT

I to wish LE People and Pat had been around 40 years ago

I wish i could be as active as you . I think the key is be as active as

your condition allows and then that little extra on top.

I am in the UK this summer has given us some insight into the heat conditions many lymphers live with not pleasant

It is something that it looks like we will have to learn to manage tho with the climate change taking place It is good to read the experiences of other lymphers many times it helps gives you new possibilities or even the realization that your not quite doing something right.

I walk i love walking even on the most difficult days and the
thought of a micky mouse cartfills me with dread so i keep pushing myself

and upto now it is working slow but i get my excercise

I have been on medication for BP lately and i am finding it has alters my routine and is therefor adding to my lymph problems in that the side effects of the meds are hampering my excercise and ability to do some of my activities

The limbs are fine feeling good but the effect on my body of the meds are causing me to stop or delay many things which is infuriating
which does no good for my BP lol

I did not realise till now how much other conditions would add to my lymph
I am learning again to addapt

User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Postby coyote » Sat Sep 16, 2006 4:41 pm


glad to see another active lympher on the boards...if I could still be as active as that, I would be absolutely thrilled!!! I used to work a lot of hours, did a lot of lifting in my job, a lot of walking and standing and now, I can hardly handle getting groceries.

Things can take an abrupt turn in your life if the doctors do not diagnose this condition (mistake it for obesity, which is a comorbid condition with LE, but in my case, the LE came first) in time. Decades of living with this condition undiagnosed give the results that silks and I and many of the other people on the boards have.

Quality of life for me sucks big time. It takes the greatest tenacity and strength of will that I have ever needed for anything in my entire life and I have gone up against a lot of adversity in my time!

Hi silkie,

Just thought I'd give you the good news I got this week: I no longer need meds for high blood pressure!!!!!! So, just keep on keeping on with your diet and exercise and I would not be surprised in a couple of years, you might not need the meds either. I know you take good care of our silks, so that's why I think that. Diet and lifestyle changes really do help. And, I was on two diuretics pills and a potassium pill (one of which was a diuretic "cocktail" of two diuretics in one pill), so that's three less pills I have to take!

The bad news is that my doctor told me I am chock full of gall stones (looks like surgery may be on the horizon) and that has really, really affected me in a negative way. I'm thinking it has been my barrier these last few months to the progress I was making the end of last year. So, I hear ya when you say that other conditions can really affect our LE treatment!

The heat kept me housebound for almost three months. When I would go outside, my legs had instant prickly heat sensations and my nose blistered a couple of times. I feel for people in places like Florida who have heat and humidity much of the time.

Julie E
Posts: 43
Joined: Fri Jun 09, 2006 10:11 pm
Location: Wisconsin, USA

Postby silkie » Sat Sep 16, 2006 8:53 pm

Hi Julie

WTG off the BP tabs i hate the @@@@ things

I doing ok though on this one

I did a 6 hour round trip to the hospice friday cab two trains an cab
each way

i was chuffed as mint balls (soz english thing means real happy)
i did it without dizzy ness or to much pain

The new therapist is nice (I gave her this site Pat)

she is settling in finding her own way to do things

but easy to talk with and knows her stuff

i trying some thigh excercises to not a pretty sight but its working

Silks xxxxxxxxxxxxx
User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Postby coyote » Sun Sep 17, 2006 4:06 am


Mint balls???? I don't know about them, but you english types are definately nutballs!!!!! :D :D :D

6 hours???? I guess I can stop whining about the hour long trips I've had to make for my health from time to time.

Glad you like your new therapist...so important!

Thunder thighs are ALWAYS a pretty sight!!!! (It's all in the eyes of the beholder!)

love ya, silks,

Julie E.
Posts: 43
Joined: Fri Jun 09, 2006 10:11 pm
Location: Wisconsin, USA

Postby silkie » Mon Sep 18, 2006 12:00 pm

Hi Julie

Nut balls? naaaaaaaaaaaaaaaaaah I just the norm for "silkies"

ok this excercising its working i got bags on me thighs now

any ideas how to shift it othere than a staple gun

if i keep going so well l'll have to loop me excess from me tum round me ears

and me thigh bags eound me waist lol

Isn't it just the way you get rid of fluid and some weight and you get

flaps were yu had a body

Any one got any SUPER GLUE


Silks xxxxxxxxxxxxxxxxxxx
User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Postby coyote » Mon Sep 18, 2006 1:36 pm


I sure hope the uk understands the national treasure that they have in you: You make me laugh soooooo hard! :lol:

I am so happy for you that you are getting great results!!!! I've had that empty sack effect to my legs and abdomen before: What a treat! Need to compress everything just to hold it all together so as to not flap in the wind! Literally!

Super glue sounds safer than a staple gun...don't wanna spring a leak!

Julie E.
Posts: 43
Joined: Fri Jun 09, 2006 10:11 pm
Location: Wisconsin, USA

Return to Welcome Family

Who is online

Users browsing this forum: No registered users and 3 guests