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Hello/Questions/My Story/Help Someone Going Crazy

PostPosted: Wed Dec 22, 2010 3:03 am
by Herbivorous
Hello, all.

I've been "lurking" the forums for several weeks.
Back when my left foot started to swell in July of this year, I stumbled across this site and I thought
"What a terrible condition to have- I'm glad I have something different."

Now, a few days from Christmas, I have to face reality.
My feet and hands are all getting bigger.
I can't seem to keep my limbs warm- they tingle and go numb all the time,
and my legs turn bright red if I sit with them down for a while.
I still have reason to believe my problems are more circulatory in nature,
but their worsening,
and recent development of pain/possible swelling in my...ahem...lady parts have me extremely frightened.

I have terrible anxiety, actually.
This is all I think of every moment of every day.
I cry myself to sleep imagining that I'm going to swell up like a big red water balloon,
my body ravaged with cancer, horrific infections, etc.

I've been to one internist already who simply told me I'm fat (like I didn't already know).
A very nice therapist I spoke to at my city's lymphedema clinic said the swelling not going away was the only bit typical of lymphedema-
particularly this round bulge near both ankle bones that won't go away.
But it appearing in all four limbs after no surgery or trauma is even more odd.
I do have lipedema (I didn't have a name for it til I started researching).
I'm scheduled to see an internist in January, and will soon make an appointment to see a vascular specialist to have a lymposcintigraph. (sp?)

I'm rambling.

I suppose I just want to know:
How many pounds of fluid have you gained since the start?
Do you get infections often?
How swollen are your limbs?

Thank you all so very much.

Re: Hello/Questions/My Story/Help Someone Going Crazy

PostPosted: Wed Dec 22, 2010 11:36 am
by patoco
Hey "Herb"

Take a deep deep breath now and try not to let this unravel you (easier said then done, right?)

I can imagine the battle you're going through trying to figure this out and get some help.

It is literally impossible to predict just exactly lymphedema will express itself in each individual.

Our LE is the hereditary form and we range from very very mild (for over 50 years) to the worse one where it has become life threatening. The good news actually is that most LE doesn't get that bad. This would be especially true if you can get intervention asap, get a management program established and by being consistent in following your plan.

Also, while you are indeed correct by thinking about cancer from LE, it is very rare. There is also good evidence that my lymphoma and my brother's lymphoma is actually a genetic predisposition for it as several other family members have gotten it.

My brother had Hodgkins lymphoma and was never sick a day in his life before he got it. He had no lymphedema and was an award winning athlete in school.

So, relax on that one too.

BTW, once you can get a program established, you''ll be amazed at just how many things you can do. Look through the site and you'll find all the "hobbies" I've been involved in - with bilateral LE. So, you don't have to quit life because of LE :)

It is a great idea to have a lymphoscintigraphy done, please let me know the results when you get them.

Here is our info page on it:

Lymphoscintigraphy ... intigraphy.

So vey glad you joined and posted too. Always remember that you are not alone and you have this large lymphedema family that cares and wants to help however we can.

My very best to you :!: :!:


Re: Hello/Questions/My Story/Help Someone Going Crazy

PostPosted: Mon Dec 27, 2010 5:44 pm
by blubrdfrend
Hello Herbi,
We are happy to have you aboard. You are probably much younger than me, so I have some good news. My lymphedema did not hinder my activities much until after age 50. You will still be able to have an almost normal life for many years. I am 64 years old and I have had lymphedema most of my life. I can no longer hunt rocks and arrowheads in the creek bottoms but I can still work in the yard and take the dogs for a run. They run, I am riding in a 4 wheel cart. It has a bucket on back for a rake, hoe, ant poison and bird house cleaners. Herbi, you can have an almost normal life. You will have to make some adjustments, but you can do it. Let us know how you are.

Re: Hello/Questions/My Story/Help Someone Going Crazy

PostPosted: Thu Dec 30, 2010 5:39 pm
by Moons
Welcome to the forums and a great big "Hang in there", my motto I adopted from AA, One day at a time. I have just kept on slowly plugging doing what I can. I so understand where you are coming from. It can be scary and frustrating. That is why I am so thankful for Pat and the others on this forum.

We more often than not run into medical professionals that are not knowledgeable about LE, it's not their fault, it is not very well covered in med school. However the knowledge base is growing and there is research being done. This forum and website are a great resource of information and support.

I too have my first appointment in January, with a specialist in Houston. I am so looking forward to be able to discuss this with a professional. Just to have someone that understands and believes you I think will be a great help.

I have that bulge on my ankle, that when anyone sees it they shout. OMG what happened to your ankle? I also have groin swelling but it comes and goes. This can be very uncomfortable. Someone on this forum suggested bicyclist shorts since they are form fitting and have extra cushion in the crotch. I have not tried them, but it makes sense to me.

Please keep us posted on your progress.