Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-16-2010, 06:12 PM #1
lorigood243 lorigood243 is offline
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Default How do you get treat your edema?

I have abdominal RSD and alot of edema because of having 3 surgeries and many biopsies. I have been taking Prednisone for 5 years to keep the swelling in check but everytime my drs would change medicines i would swell more. Its a very long story. But i just discovered that i probably have RSD a few weeks ago. SO I have 70lbs of swelling. my doctor changed my meds last week and sure enough i have swelled more...20lbs more!BUT I am finally out of pain! He put me on a Fentenyl patch, Methadone and Neurotin ( i was on oxycontin and Percocett) but this swelling is all in my lower body and i am taking Lasix to get it off. Lasix had taken off extra swelling before so i am hopeful. Im sorry i am rambling, i cant think straight tonight!

My question is this: what do you use to treat your edema?
Thank you
Lori
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Old 07-17-2010, 04:05 AM #2
Neoplasm Neoplasm is offline
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You are getting/have ascites (fluid in your abdominal cavity)? And the doctors think it's RSD?

And does everyone here have edema?
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Old 07-17-2010, 02:34 PM #3
RNcrps2 RNcrps2 is offline
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I have generalized RSD and I have gotten swelling in ankles, knees and fingers, but mine comes and goes and isnt that bad. I use to soak my feet in hot epsom salt baths. Now i do hot water therapy and since then I only get swelling once in a while.
I believe RSD varies- some of us get swelling bad and it stays a while and some of us the swelling isnt as bad. Am I right? momof4
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Old 07-17-2010, 07:14 PM #4
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Originally Posted by Neoplasm View Post
And does everyone here have edema?
I get edema intermittently, but not constantly or with any pattern that I can tell. I elevate my leg and do lots of ankle pumps to try to get it under control.
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Old 07-19-2010, 07:39 AM #5
lorigood243 lorigood243 is offline
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the edema is is my cells not like a pool of fluid. i have had 3 abdominal surgeries each one worse that the one before causing more pain and edema.
i havent gotten a formal RSD diagnosis yet but my primary car thinks it is what i have and it makes sense to me. my first surgery was 1991 a C-section and the birth of my twins. i immediately had fibromyalgia but wasnt diagnosed for 3 years. then after 10 crippling years i had a healing prayer that cured it in an hour. it was a miracle! i am grateful for it. i was well for 5 years until my gallbladder surgery and had terrible pain and swelling immediately and was bed ridden. that was january 2005. november 2007 i had a big tummy tuck to remove all the swollen tissue and it was traumatic. the swelling grew twice as big and the tissue burning feeling
was unbearable! i have been through endless combos of pain meds and was still in pain and misery till 2 weeks ago. i am comfortable and looking for more answers and learning more about RSD.
Blessings
Lori




Quote:
Originally Posted by Neoplasm View Post
You are getting/have ascites (fluid in your abdominal cavity)? And the doctors think it's RSD?

And does everyone here have edema?
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Old 07-22-2010, 09:07 AM #6
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Quote:
Originally Posted by Neoplasm View Post
You are getting/have ascites (fluid in your abdominal cavity)? And the doctors think it's RSD?

And does everyone here have edema?
From the Cleveland Clinic website:

Edema is swelling that is caused by fluid trapped in your body’s tissues. Edema happens most often in the feet, ankles, and legs. Other parts of the body, such as the face and hands, can also be affected. Edema can happen to anyone.

The more classic definition is fluid in the abdominal cavity, but modern medicine has now expanded that to include the type of swelling described above. Yes, that is a very common symptom of RSD, extreme swelling of the affected limb or limbs.

I have had doctors prescribe compression hose, which helped and hurt at the same time. I eventually gave up on those. I follow a "common sense" diet of low sodium (but not going overboard - our bodies do need some natural sodium) and put my feet up as often as possible.

I have discovered some shoes from New Balance that are black leather uppers, synthetic, soft soles, and have Velcro fasteners. At a glance, they can pass for men's dress shoes - enough for me to get by wearing them to work. I can reach down throughout the day and quickly adjust the tightness without having to fumble with laces.

These are also available in white, and (I think) canvass.

Mike

Last edited by bassman; 07-22-2010 at 09:11 AM. Reason: grammar
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Old 07-22-2010, 12:21 PM #7
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thank you Mike
Im glad you have found some comfort through trial and error.
My edema is all abdominal, mostly on my right side of my abdomen.
It has happened from 3 surgeries and countless biopsies trying to figure out what was wrong with me. Now i have 70lbs of swelling and clueless how to remove it. Lasix doesnt help, prednisone seems to keep it from increasing but doesnt reduce what i have. its very exhausting carrying all this fluid. i need a great doctor !!
sigh
its one of those days, at least im not in horrible pain, thanking God for my new combo of meds.
thanks for replying Mike!
Lori



Quote:
Originally Posted by bassman View Post
From the Cleveland Clinic website:

Edema is swelling that is caused by fluid trapped in your body’s tissues. Edema happens most often in the feet, ankles, and legs. Other parts of the body, such as the face and hands, can also be affected. Edema can happen to anyone.

The more classic definition is fluid in the abdominal cavity, but modern medicine has now expanded that to include the type of swelling described above. Yes, that is a very common symptom of RSD, extreme swelling of the affected limb or limbs.

I have had doctors prescribe compression hose, which helped and hurt at the same time. I eventually gave up on those. I follow a "common sense" diet of low sodium (but not going overboard - our bodies do need some natural sodium) and put my feet up as often as possible.

I have discovered some shoes from New Balance that are black leather uppers, synthetic, soft soles, and have Velcro fasteners. At a glance, they can pass for men's dress shoes - enough for me to get by wearing them to work. I can reach down throughout the day and quickly adjust the tightness without having to fumble with laces.

These are also available in white, and (I think) canvass.

Mike
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