hi JoMar

the swelling is in each cell, so a drain wont work because its not a pool of fluid. regular water pills takes water off in a different way..i am told through your vascular system where swelling affects your whole body. mine affects just where i had surgery and the rsd kicked in. some drs have said that my body keeps sending white blood cells to the area because it thinks there is an infection, but there isnt an infection so white blood cells keep coming to heal the area. i have whats called piited edema..you an press your whole hand into my stomch and leave a deep hand impression. its so horrible and uncomfortable. i am getting desperate for help. i am going to find a nuerologist next week to see if they can help me with the diuretic i found called mannitol. it acts differently then regular water pills and has been used for rsd inflammation and it works! im hopeful. it has to be given in the hospital by IV

If the MDs aren't able to offer much else, I don't know if your ins would cover alternative treatments..but
have you considered a naturopath, and/or I don't know if acupuncture would be too invasive with the needles, and if you did try either one it would have to be experts in the field of course.

I don't know if many RSDers have tried naturopathy care as a treatment..I don't recall it being mentioned very much at all.

but i would look into it if I was in this situation and MDs weren't responsive with care or treatments...

thank you for thinking so much about me today JoMar, i appreciate you!

about 9 months ago when i was diagnosed with RSD is was seeing an accupuncurist but wasnt seeing any change or benefit after a couple months and then i just couldnt afford it anymore, when i first got sick 5 years ago i was desperate or help and went the whole naturopath way for about 9 months to change no help, but i tried. i am just going to pray that i can find a neurologist that will try the mannitol on me. i found several articles that my friend Pat just sent me where the drs are successful treating rsd patients with mannitol. so i am hoping to find one that will give it to me. its just a diuretic, its not like its narcotics.
thanks again!
Lori

What type of doctor suggested this? I have never heard of this treatment and personally would never try it. This could lead to so many problems in my eyes.
As for swelling I have that now but it goes in phases of extreme and is just in my rsd areas and why I feel a diuretic for me would not help. I do feel meds that help with the nerves could help settle the swelling. I remember a video I watched about ketamine infusions and with that it helped for ex the sores people got as well. I wonder if ketamine would help your symptoms? Feel better

thanks Daniella

many years ago before i knew i had RSD...a plastic surgeon cut me hip to hop to remove all the swollen tissue..at that time he took off 25lbs. i became deathly ill after that surgery...i went code blue while i was in recovery..and lots of bad health problems occured, i am so miserable that i was thinking what if i had liposuction...because could it remove all the cells that are swelling up and then i could have some relief. i have over 80lbs of swelling on my abdomen, its crushing me..and so far no way to get relief. so even if the liposuction tool might hurt some of my nerves...if they could remove all this swelling, i think i could deal with the pain, hell i deal with pain as it is.
but no doctor reccomended this, it was my own idea kicking it around.
its probably a bad idea,,i am an inch from desperate. i am worrying about getting sepsis..will the doctors be able to save me if i get sepsis. i dont want to die from this. i need a doctor to help me. i am going to call aq bunch of neurologists tomorow and find a new internist too. i have a busy day tomorrow.
blessings
Lori

I just responded to your neuro post.
I know when things get so bad one may try a procedure etc that may not be the best for them because of being so desperate. I would never in a million years get any type of plastic or surgery even like botox which some use for pain. I think there is too much risk in damaging other nerves or flaring the current rather then settling it down.
I think it is a good idea to see a neurologist. Have you also thought of maybe going to a hospital where different specialties look at your condition like Mayo or John Hopkins?

Thanks Daniella

I have been to Hookins 3 times and they couldnt figure out what was wrong with me before i got the RSD diagnosis from my Primary care doctor.
I saw their allergy and immunology dept, he Rheumatology dept...and one other dept i cant remember.

I was also seeing the top dr in Rheumatology for 2.5 years and he didnt know i had rsd. He said he gives up on me so i left his practice...then 3 months later when i was diagnosed...i called him to tell him what i had because he had tried so long to figure it out...and he was like "no you dont have RSD you only get that on your extemeties...and i said no you can get it internally too...and he was mad at me, like who mi to tell him that he is wrong! it made me sad that he treated me that way...so i just said good bye and never called him again.

there is a dr at GW hospital who is known for working with RSD , but her main thing is ketamine infusions which i dont want. i took it orally for about 6 months and I hallucinated non stop...it freaked me out too much!

I am praying that God will find me the right doctor to help me with the Mannitol IV very soon.
Blessings to all
Lori