Newbie From Florida

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Newbie From Florida

Postby Mary1522 » Sun Aug 03, 2008 7:14 am

:D Hello All! My Name is Mary. I am 36 years old and yes I am overweight. I have always been big since I can remember. I was told I have Lymphedema in both of my legs in 2006.
:x I was told that they could not do surger to fix the problem by a specialist. This so called specialist told me to lose weight and put me down for my weight for 20 minutes. Which I than in turn I had to pay him $35 dollars for his put downs. I could have called my brother for free and let him do the put downs for nothing.
I was told by my doctor of 10 years that the bunch was just my fat trying to find another place to form. So I changed doctors and that is when I found out that I have Lyphedema. My left leg is worse than my right. I have a big bunch up near my knee, another bunch on my calf, and another starting by my ankle.
Last year my new doctor move so I found another Doctor that sent my to Theripist. Where they wrapped my leg and did massarge theripist on my leg, but the wraps would not stay up on my leg and I found out that the Lyphedema was also in my back.
Now I have another new Doctor that wants to put me in a wheel chair. I have to walk with a cane every where I go and sometimes I pay the next day for all the walking I try to do, but I find that when my leg is swollen I walk like I have been riding a horse all day.
I find that my leg starts to leak; I have tried using badges but they just get filled to fast. I have to wrap my leg with a towel.
My legs fall asleep if I sit to long in one place and I have shotting pains in my legs that never seem to stop. I spend most of my time in bed with my legs up on pillows. I sleep about one to two hours a night. I just can not get comfortable another to stay asleep.
If I do go any where I get sick very easily. Sometimes I feel like I am going to lose my mind.
I was so glad to come across this web site and find that I am not alone. That there are others going through the same thing I am. I do have one question; :?: How does everyone deal with the pain? :?:

Thanks for letting me vent. I hope I did not talk everyones ears off. :!: Mary :roll:
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Joined: Sun Aug 03, 2008 3:26 am
Location: Zephryhills, Florida

Re: Newbie From Florida

Postby patoco » Sun Aug 03, 2008 7:44 am

Hi Ya Mary :)

LOL......feel totally free to vent :D ....Lord knows I've done that enough and besides that is why the family is here - to help and listen :!: :!:

I'm an ole Florida boy so it is always good to have someone else from the home state join.

At least you have kept your sense of humor too....that is soooo important :wink: Loved your comment you could have called your brother for free.

You mentioned LE in your back..... wanted to ask you how is your breathing? Have you had any problem with fluid in the lung? My LE went through a massive change in the last couple years. It was only in my legs....then arms....then -boom - all over, back, abdomen, chest. I felt like a walking plastic bag of water....glug.

Pain -

Oh, yes....I fully understand why people shoot themselves to get away from the pain. For me, it became mind ripping...gawd....beyond belief. I really hated going to prescription pain meds and fought that for years. I tried ibuprofen and then noticed even more swelling. I did research on NSAID's and found that they stop the microscopic contractions of the lymphatics - thereby causing even more swelling. That was really ba news for me because the liquid gel caps really did help.

My biggest concern was that I did NOT want to become hooked on pain meds. I just have seen too many people become hooked on them from innocent use.

I was told that those of us who take the prescription for real intense pain actualyl have a lower rate of that then otherwise - and - that the best way to actually avoid that was NOT to take a pain medicine only when the pain was pushing me over the edge.

Rather, start on a systematic pain management program. So for the last year, I have been on prescription pain meds.

The good news is two fold.

First, the amount I take has not increased.

Second and perhaps most important is that, Mary, it has really added some quality of life. To not be in such pain has been a bright spot in a very dismal medical situation. Looking back, I am soooooo glad I finally took the doctors suggestion and got on a management program.

BTW....on those leaky wounds? Are you able to wrap your leg or have anyone that can help? I use these things called ABD pads. They are surgical pads generally used for abdominal surgeries. But, they are great for lymphedema wounds. They're thick, soft and absorbant.

First I put some baby diaper ointment (with zinc - important) on the wound. Then the ABD pad. After that I wrap the leg in rolled gauze and then the short stretch bandage.

I've thought about a wheelchair too at times. But, I'm afraid if I start using one, that's going to be it. I do use a cane and have since last Fall. After being in the hospital, I was going to return to work. Walking up to the office building, with my oxygen tank in tow, I went to go up a couple steps and fell flat - and I mean - flat on my face. OK, call me stubborn, but that taught me a lesson. So much for false self pride. :roll:

I hope your new doc works out. Trust me, we all understand about that. Having lymphedema is bad enough, but I have also had two distinct types of lymphoma in the last thirteen years. Gawd....add lymphoma to hereditary lymphedema and you would think I was a alien creature from Zylof or somewhere else. I was very frustrated for years trying to find competent and caring docs.

Thankfully, now I have a wonderful team. The best oncologist, ID doctor, lung doctor. I really wish I could clone my team and send them to lymphers everywhere. They are really super.

LOL...guess I really should close my book now :lol:

Glad you joined us, look forward to getting to know you.

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Re: Newbie From Florida

Postby armywife » Tue Aug 05, 2008 2:41 pm

Hello all,

If we are not suppose to use NSAID for pain(Motrin, Aleve and Naproxyn etc etc) What DO we take?? Is aspirin OK?

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Re: Newbie From Florida

Postby patoco » Wed Aug 06, 2008 1:27 am

Hey Army :)

Aspirin would be ok, but I am the first to acknowledge it doesn't work to well. The other other would be something like Tylenol which is not an NSAID.

I don't know if you saw other posts where I explain what NSAID's do. One method that the lymph system uses to move fluid through the lymph system is through the microcontractions of the lymphatic vessels. The NSAID's stop this contraction process, thus causing more edema.

I had been taking the Advil gel caps (liquid). After I started having san unusual new edema I did research on NSAID's and found this info in a couple studies that were done. Total and complete frustration for me as those liquid gel caps really did work for me.

I'm afraid this is an area where our options as lymphedema patients seems to be quite restriced. :( :cry:

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