one more newbie!

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one more newbie!

Postby corin28 » Sun Oct 29, 2006 12:21 pm

Hello Everyone! My name is Corinda. Two weeks ago I was diagnosed with lymphedema of the leg. I am 28 years old and have a 9 month old son.
This all started for me 4 years ago..my foot would swell up and I could barely put my shoe on some days. I had seen 2 doctors about this and they both told me it was edema and prescribed water pills. This never really helped to much because as soon as I stopped taking them I would swell up again. Two weeks ago I come home from work early with what I thought was flu symptoms( vomiting, fever). Took about a 2 hour nap and when i woke up I could barely walk. I called my dr's office and was able to get in. I went and picked up my son at daycare and off we went to the dr's. He sent me for blood work and my white count was about 4x what it should have been. from there he sent me for a few different ultrasounds. I swear i was KY from chest down to toe.. Still had no idea of what was wrong with me. From there I went to the ER to get a ct scan done. They were checking for apendacitis. That came back w/ nothing. So at this point they still had no idea what was wrong with me. They admitted me into the hospital and started IV antibiotic. I should mention I had no sign of infection on my entire body. The next morning I woke up with a red foot and shin, and some extreme pain. Was i glad to see that..Thank goodness was my thought..an infected foot. not a bad deal.. yeah right. lymphedema they tell me.. better than cancer is my thought at the moment.
i guess i am running on here, but i just wanted to explain my situation a little. At this point I really don't have much of an idea of what to expect. I know I have to change my life. Doc says elevate foot.. lol is what i do.. I have a 9 month old to chase around..I need to work..right now I am in no pain (will that change as it progresses?) I am waiting to find a physical thereapist to go see to get fitted for a stocking. That is just a thrill knowing i have to have that the rest of my life. Then my doc says compression therepy. Anyone have experience with that? Good or bad I still would like to know.
Thanks for letting me go on. I will end here, but expect to see me around because i have lots of questions.
Corinda
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Postby silkie » Sun Oct 29, 2006 1:21 pm

Hi Corinda (what a lovely name)
Big Welcome the Family

First thing all therapy is Wonderful nothing to fear
Very very helpful and relaxing

and the Supports are no fashion statement but they sure as heck will help you keep up with a 9 month old.

you need to see a lymphedema therapist specilaising in the right treat ment for lymph limbs.

MLD manual lymph drainage is simply a massage to manipulate the nodes and move the fluid causing lymphedema out of our body

this is still in my opinion the best way to keep the limb as free of the fluid as possible.

check out MLD you will soon learn to do it yourself
i wrapp my legs in bandages each night after performing mld this compression helps the fluid building up again

and each day i were my supports

I am maticulous with skin care of the limbs infected as a tiny break in the skin can let infection in causing the problem like you had cellulitus and other not very nice infections

skin care is essential as brushing your teeth
have aread of the letters and the info here is the best on the net

any questions at all ASK ASK ASK
it is no trouble at all the simplest thing please ask

were here to help support and vent at anytime
and we will vent right back on our tough days
thats what families do be there for each other

this is the best family

Hugsssssssssssssssss

Silks xxxxxxxxxxxxxxxxxxxxxxxxxx
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Postby teeger » Tue Nov 28, 2006 1:26 pm

Hi
I'm a new one also. I'm in the process of getting dx. I have to go and get vein mapping friday.
I have a question, do any of you have pain with this. Can it effect other parts of your body without the swelling. I'm in pain even tho my right and left leg are swollen. Right leg more than the left. I also have pain in my hands arms and shoulder. Slight swelling in fingers. Just went thru PT. Didn't help much for the pain.

Please let me know as if it does not cause pain, I will have to go and search for the cause of this pain. Thanks

Anna
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Postby silkie » Tue Nov 28, 2006 3:12 pm

Hi Teeger
Welcome to our family :)

I have pain in my legs and a numbness and pins and needles when the feeling is coming andgoing heat to especially on the outer thighs

Swelling in the fingers could be lymph have it cheched out.
I have carpol tunneling in the left and recently the shoulders and nech are very painful. I am using a taping called kinesio that is helping with the shoulders and arm. There is Information under treatments about kinesio

I do find the pain is helped with MLD and my supports

and moving the limbs getting the fluid moving (i think) help relieve the pressure that it might be putting on certain pressure points mine is my knees and shins and the outer thigh Saying all this i do have pain killers
but i dont use them unless all else fails.

Many so called experts mention them being no pain with lymph
i would like them to have it just for a day tand then say that

I am pretty lucky in that my pain can be intermirrent other suffer a great deal of pain.

Hugsssssssssss

Silksxxxxxxxxxxxxxx
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pain

Postby teeger » Wed Nov 29, 2006 7:42 am

HI
Thanks for the quick reply. wow, England. World is sure getting smaller.
My pain in my ankles is understandable because of the swellling. I have had swelling in my legs forever as I have had blood clots and such. It was always my left leg and foot, which created a pain when buying shoes, that was always the swollen the most. This summer tho it was my right leg that ballooned.
The pain started with soreness in my hip and then to the back of the leg as the feeling of "charlie horses". Then it traveled to the ankle. This was on the left side. The it switch to the right side. Back of leg, ankle, then the knee. Left leg not as severe. All this happening with legs, the wrists started to hurt and then the hands, arms and shoulders. I'm afraid this more than lymphedema. My sister passed away from Scleromyexdema/Scleroderma. My cousin has Scleroderma. I sure hope this is not what it could be. If your pain is anything like that I have describe it would be kind of a relief to know that it may be related to lymphedema. Please let me know.
Again Thank you
Anna
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Postby silkie » Thu Nov 30, 2006 1:00 am

Hi Teeger.
I must admit to being totally ignorant of Scleromyexdema/Scleroderma
I have been reading up a little on this condition. I might add if i was concerned about any other conditions if it is possible to test for them
I would. Eliminate as many possibilities as possible to find out what you are dealing with.

you said.........."The it switch to the right side. Back of leg, ankle, then the knee. Left leg not as severe"
I find my pains tho intermitent some days depending on how Gung Ho i have been in over taxing my limbs does
affect the same areas time after time. It doesnt move it does add new areas though.

I had a family with this condition (but in total ignotance of it) and i managed like all mums do . Somedays my legs and feet were very swollen and painful but that was normal to me was a case of ignorance and thinking the aches and pains were normal.

I do believe if i had been aware of and been able to do self care have the garments i would be a lot more mobile than i am today but i cant actually prove that. and maybe i would be i feel a lot more mobile.

I would in your position Teeger get my doctor to have me tested for BOTH conditions, If it is lymphedema there is a lot you can do to help yourself. the garments you talk about do support your limbs and i have found help by supporting my limbs help with the aches of the being on the legs a lot.
With a baby toddler i would be taking every opportuninty to rest when they are resting. conserve energy and give your legs the opportunity to
recover even if its little periods take the moments in time.

The MLD will help move some of the fluid and removal of fluid helps your limbs learn self help. mld massage skin care, help to keep our limbs in the best condtion they can be .
Check out the information and learn learn learn You need a lymphdema therapist no just a physio hun someon that has trained especially in lymphedema.

Good Luck let us kinow how you get on

And see your doctor about testing

Hugsssssssssss
Silksxxxxxxxxxxxxxxx
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Re: one more newbie!

Postby SKIPPY » Wed Jun 08, 2011 12:50 pm

I recieved my lymphedema from a falling 5 ton, "I" beam that crushed the tissue between the knee and the instep of the foot in both legs. ( The right one more than the left) This happened three years ago.
After seeing five (5) specialists, 1 MRI, 2 CT Scans, 4 ultrasounds, 15 X-Rays, 12 weeks of Lymphedema Therapy, 4 hospital addmissions with cellulitus infections, 3 months of elevation, stockings, wrappings, and two years of drugs, I am
experiencing a failing right leg with incredible pain and swelling around the ankle and lower calf. Both legs have pain from the knees down. An area of about 6 square inches around the lower calf and ankle are collecting "old Blood."
I was warned by my orthopedic doctor years ago, not to exceed 4 hours of standing and walking per day. Up unitl eight weeks ago that was law. You could set your watch on it. Now it has gotten to the point
that I am lucky to make it one hour a day without the risk of falling.
As a 55 year old electrician, I stand to loose my investments, and job as a result of this. I was signed off by my five specialists as permently partially disabled in 2009. My personnal doctor has ordered my records from the
injury and follow up care. He is trying to combat the pain and decrease in my mobility. I have all the signs of Grade 2 Lymphedema. Does anyone have any ideas for the pain?
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Re: one more newbie!

Postby patoco » Thu Jun 09, 2011 8:02 am

Hey Skippy

Welcome to our family here :!: :!:

I can imagine how much pain you are having. Talk with your doctor about a daily pain medication. I had such pain that I fully understood why people shoot themselves to get rid of pain. I also resisted the doctors for years and years about pain meds because as I told them, "I'm afraid of addiction."

They assured me that if I followed instructions on their use, that it would not happen. Finally in 2006 I just had to do something, so I went on the pain meds. They were right and believe me it has made such an enormous diffference in my life not to feel like a truck ran over all day.

Also, I wish you could get a referral to see a certified lymphedema therapist. They could give you an evaluation and in addition can help you manage the LE.

My very best to you!!!!!

Pat
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Re: one more newbie!

Postby SKIPPY » Thu Jun 09, 2011 12:58 pm

Thanks Patoco,

As I mentioned I had 12 weeks of therapy with a Lymphedema Therapy Specialist. The only thing that happend during the course of
treatment was another addmission to the hospital for a cellulitus infection. I forgot to mention, that I also have psoriasis. Stockings and
wrappings will invite infection due to them rubbing against my skin. With all the pain, sometimes you wish the falling beam that did this
should have cut me in half. How it only hurt my legs and threw me four feet I can't figure out. I have tried Vicodin, and Tramidol. They don't work.
The N100 Darvosets worked great. They took it off the market because peoples' hearts were stopping. Again any pain help would be useful.
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Re: one more newbie!

Postby patoco » Fri Jun 10, 2011 7:44 am

Sorry for missing the lymphedema treatments :(

BTW, I use to have psoriasis too. Many of my family do. As I got older, mine eventually stopped.

Have you ever tried hydrocodone? How about the Fentanyl patch? The patch comes in many many strengths too. Do try to get on something. You may have to try several before you find one that works.

Shouldn't say this, but I hated the stockings too for the way they rubbed the skin. Maybe we just have thinner skin then others, but it was almost like a sandpaper on my leg. Then after my surgeries, I really was unable to wear them again anyway.

I do wrap though every day. I use short stretch bandages.

Pat
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Re: one more newbie!

Postby tami » Sun Aug 21, 2011 5:34 pm

Hi- I had posted in a nother area that I was diagnosed approx 2 weeks ago. It was a relief I couldn't figure out why I felt so terrible and weird. The doctor will only give me anti-inflammatories for the pain, this has taken away some of the discomfort, but (esp) after the MLD I am in a lot of pain. Any suggestions on how to approach this with her? Doc said that most people don't have pain, only a few, but mine is generalized and she said stage 3 and 4? I am still learning sooooo much.
Thanks for any info and suggestions! I have to be able to work and function.
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Re: one more newbie!

Postby patoco » Mon Aug 22, 2011 9:52 am

Hey Tami

Good grief, these doctors who say that most of us don't have pain have never had lymphedema. Trust me, we do...and sometimes it can be unbearable.

The nerves get compression by the swelling of the tissues and this causes pain.

I used to have it so bad that I really understood why people shot themselves to get away from it. It is soooooooo much better now to be on a mild pain relief system...makes all the difference in the world.

Here's a good page of info:

Lymphedema and Pain Management

http://www.lymphedemapeople.com/wiki/do ... management

Pat
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Re: one more newbie!

Postby tami » Tue Aug 23, 2011 5:02 pm

Thanks Pat! It is so great to know that I am not alone in this. It is overwhelming at times. Just the physical feelings, pain, etc... and then trying to understand what is the disease and what isn't. I am blessed that the lady who is doing my MLD (?) is incredibly educated in LE and a great resource.
T
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