Hi Desi, sorry it took me so long to get back- but it was great to hear from you too . CZ stands for initials in my name not too creative I guess!
The fluid is not in the tissue like Fibromyalgia, I've been told with rsd it collects in the nerve cells. I know , it cant be something normal like taking a water pill..lol thats rsd for you. The infusions take the fluid out of the nerve cells. I have no idea how or why they do. But one time I had to be hospitalized for 5days in ICU up there and they estimated I had 13 pounds of fluid between my two legs- they were huge my calfs, and so painful, red hot burning. After the 5 days, which i was basically unconscious for , the fluid was gone , the alloydina and the pain was significantly reduced from like a 9 to a 4 with meds. So I am very dependent on the infusions for severe flares that my meds can not reduce. This time i was scheduled for a week but it took two weeks to get it out as an outpatient. Im very grateful -the pain was intolerable -I particuarly hate spine pain- mine is in the middle of the spine but the alloydinia and swelling covers my entire back.

Enough about me Are you feeling better? What has been going on with you? Could you update me? I am hoping to be able to go back to the therapy pool. I have lost allot of weight but I do not have a muscle left in my entire body... not pretty. Do you go to a therapy pool? Let me know ok? It was great to hear from you. Sincerely CZ

QUOTE=Desi;244844] Hi ya CZ! Hey, what does CZ stand for anyway?? Anyway, thank you so much for your kind reply back to me. So, you just came back from a 10 day ketamine booster in Philly?!! What was all that like?? Please do tell all! LOL anyway, CZ, I am so happy that you are doing much better!! I love hearing that! So, they took 6 Lbs. of the 10 Lbs. of fluid out of your back!! OMG!! What is up with that? How did you get all that fluid there in your back?? Ouch!! I am so glad to hear that Dr. Schwartzman is so good and kind! That is great to know, CW!!! Your an "Awsome friend"!! Thanks so much Lady for replying back to me!! Take care of you! You will be in my prayers, Dear one! Love, Desi[/QUOTE]