Can't type much because RSD has wrecked my hands buty first WELCOME and second, RSD can spread fast for a while than slow down and stop and than speed up again. It really is individual to each persons body makeup. For instance - your immune system, how long you had it before it was fiagnosed, what activies you continue to do that might keep aggravating it and so forth. I hope this helps as well. Chin Up!

Mark

Heidi,

I just read your post and Im sorry if I hurt you or offended you in any means!! I wasnts saying to you that you shouldnt worry and that you will have to learn with it at all. I was just telling you of what I have done in the past. Again, I am Very very sorry!!

You mentioned also something about fluidotherapy? what is that, or is it simialar to aquatherapy?? I did that in the beginging with my PT and loved it. I was in a heated walk tank and that helped the most and thats what still works to this day to , to help lower the pain levels.. warm soaks!! How is that going for you?? With mine, the PT actaully got in with me and helped metry and move my ankle adn foot.. all to no avail, but it felt soo good to be in there, they just had me from side to side just to see if i could get me foot free;d up.

Again , sorry, and hope to talk to you more!!


Amber

At my first attempt at therapy, they used a machine called fluidotherapy. It was a machine that you could put an arm or a leg into. They would warm it up before putting your arm or leg into... it was basically a metal box that contained finely ground up corn cobs. In the end of the box, was a cloth, and you stuck your arm or leg in there. The machine would "gently" throw the corn cobs on your arm or leg while blowing warm air around. I think the idea was for desensitizing. Since my pain was in my shoulder, and the thing threw the cobs at my forearm - it didn't help anything. It felt pretty bizarre. Kind of gave me the willies that there was no way to clean the cobs between patients. Who knows what the person before me had (shivers!) - but I kept telling myself that they rarely had anyone with RSD, so it probably had not been on for months before I was in there.

My therapist insisted I do it for 20-30 minutes of my hour of therapy. With my shoulder injury, it was painful to put my arm in the box, and hold it still that long. I am a short person, and it was uncomfortable sitting in a way to get my arm in the box. I didn't have sensitivity in the area that would fit in the box, and didn't understand why he wanted me to do it. He showed me in his textbook for OT - where it said to do fluidotherapy. That was why - It said so! I got my bill for therapy, and found I had to pay $40 per session for this fluidotherapy. After that bill, I didn't do it. I told him it did nothing, except make my shoulder hurt worse, and if he insisted, then I was not going to pay for it! (I guess I am a nightmare patient! LOL!)

Of course, they would follow it up with ice too (Yikes!)

They don't use fluidotherapy (or ice) at the place I go to now.

Maybe the fluidotherapy they use where Heidi goes is completely different....

Angel...Oh my goodness!! No, no...you didnt affend me by any means!!! So, no reason to appologize at all!! All is good!!!

Anyhow...Ive been having Fluiotherapy during my physical therpay appts since Sept...My Neuro-Pain Dr is a strong believer in it! I didnt know a thing about it, till I got to my first therapy appt...Im going to be honest, I myslef love it...My therapist who has been dealing and working with RSD patients for over 20 years, told me that she was very impressed how I tolerate the session..She said that alot of the RSD patients she works with and have the Fluidotherapy treatments, cant tolerate it!! Anyhow, here is a brief description of what it is..

Fluidized therapy (Fluidotherapy®) is a high intensity heat modality consisting of a dry whirlpool of finely divided solid particles suspended in a heated air stream, the mixture having the properties of a liquid. Studies comparing its effective heating with that of a paraffin bath and whirlpool have found them to be similar. The indications for fluidized therapy are similar to paraffin baths and whirlpool. Use of fluidized therapy dry heat is an acceptable alternative to other heat therapy modalities in reducing pain, edema, and muscle spasm from acute or subacute traumatic or non-traumatic musculoskeletal disorders of the extremities. Fluidized therapy is contraindicated in patients with local sensory loss or open lesions.

It basically is a desensatizer for the nerves in the area the RSD is affecting...Right now its in my left lower leg/foot so I sit on a high rise bench and put my affected leg into the Fluidotherapy machine...They turn it on, and I sit while its on and doing its thing for about 20 mins...My foot and leg feels so relaxed after the session..I know this isnt for everyone, but I myself like it alot!!!

--Heidi

Eek 40 bucks a session..Dang, that can for sure get pricey..I go to therapy 3 times a wk, and have the Fluidotherapy done during my therapy sessions..Cant say I blame you at all, for not wanting to continue the sessions, if A. was making the area worse, and not helping any..and B. specially if it was costing you that much out of pocket..I work at the hospital where I get my therapy done at, so I may get a discount of some sort, I dunno..But, I have really good ins, so I dont have to pay out of pocket for any therapy appts...Got, that going for me anyhow..lol

Im having problems with my Neuro-Pain Dr that is treating me for my RSD..He doesnt take any ins, just medicare and medicade...Every appt I go to, its 200 bucks out of pocket cash due paid in full at the end of the appt...It sucks, but what can you do?? I have to see this guy, he specializes in RSD..And hes good, real good, knows his stuff...If I were to look for someone else in Houston, that would except ins, dont know if my ins would cover anyway because it would be considered "out of network"..So, I suppose dont matter either way...

--Heidi

Heidi
Oh, you are so lucky your therapy people have that much experience!!!! And a doctor that actually knows about RSD.

I think we all sort of jump to conclusions here with "new" people, because there are SO many people who are being seen by doctors and therapists who don't know that much about RSD. Like the guy who was treating me in the beginning. Everyone here wants other RSDers to get the best treatment. So many of us didn't, or aren't.

With the fluidotherapy, I can see if you could sit with your foot in the machine, it would be relaxing. If you had the sensitivity, it would help you get over it too - if you could tolerate it. For me, it felt ok - it was just on the wrong part of me! LOL.

The insurance I had at the time, I had to pay 40% of each visit, plus they did not cover the fluidotherapy at all, so I had to pay for it myself, on top of the co-pay for the therapy. Now, our insurance has changed, and each visit is $20 no matter how long. Since I go so far to the therapy, they schedule me for 2 hours. We work on stretches and exercises for part of the time, then the rest, they work on treaching me new ways to do things that are hard for me. Everything from putting on a coat, reading a book, brushing my dog, photography, all sorts of things. Pretty cool. I had some diverse hobbies before RSD, and I thought I would have to give most of them up.. but she has helped me adapt to be able to do most of them in some way again.

Wow - $200 per visit. I went to a pain doc that knew a lot about RSD. She was really nice. Went to her for 2nd opinion. She gave a lot of good info that has helped me. After the fact, got bill for about $450. From her BUILDING!!! My insurance would not pay it. A "facilliites fee" because her office was in a hospital. I saw her in what I would call an "office call" but it was billed as outpatient surgery! Her office said all of her patients were billed that way. No help there. The "building" guy said that all doctors in the building's patients had to pay this fee every time they saw that doctor. So - since I cannot afford that - I cannot go back to her.

Heidi... don't be afraid to ask questions.... I promise I won't dominate the replies. I don't normally have time to reply at all! It just so happens that I don't have anything to do at work tonight, which only happens once every 3 months or so! So, you will probably not hear from me very often!

Jules

Heidi, I don't recall who said it, but someone said they tend to read "rsd" into every ache and twinge their body gives out. I also found myself doing that for quite some time. You have to train yourself NOT to do that or you'll have yourself in full blow full body rsd in no time (i your mind, that is) LOL! You'll get the flu, and think "OMG! I have rsd in my tummy!" You'll get a kidney infection and think, "OMG! Rsd reached my kidneys!"

Yeah...it's hard not to panic with this disease at first...especially if you've read a lot about it on the net. I've broached a lot of things with my (very patient) pain doc and he said, "Don't believe everything you read on the internet...stick to the reputable sites, and stay away from the kooky ones that don't have science behind them." Now, I tend to believe that a message board of THIS caliber, with THIS caliber of people HAS science behind it. If you could have seen the links and research stuff that were on the old message board before it crashed, you could see how seriously these people take this disease, and just how much they know. They don't take it lightly...and they don't just throw things out there on a whim. They do say they aren't doctors, tell you what worked "for them" and they also base a lot of what they say on what the "general practice" is. BLOCKS are usually ALWAYS the first line of defense.

Please do cheeck back and let us know what the doc says...but just don't fall into the "omg, I'm rsd all over!" trap like some of us happen to do here and there, k? LOL!

Hugs
LisaM