Desi,
when my RSD started in both hands, most doc said how could i had RSD in both hands at the same time. Then when i told them it spread from hands to arms and to feet, most said it was impossible and that i did not have RSD. So i asked them what did i have, they did not know. Now my RSD has spread to upper arms and shoulders. I don't know who to stop this spreading. My pain doc said i would not benefit from any more blocks.
I will pray for you and your husband to get well.
Take care!
Numb

[COLOR="Blue"]Hey Screwballpookie!
ok, I'm at a loss here! You said, IF it is RSD?? Listen, If this is all workmans comp, can you at least get yourself to another pain management doc. once and for all and let him look at you and at least tell you what you do have? About the swelling part, I am no doc. but if the swelling is on your feet, maybe ask if you can get some good compression hose? I wear them and find I can do so much more with them on. If you do not want to go to another doc. tell that doc. that he is living in the dark ages where they said it was all in your head! This doc. sounds like a real winner! I swear, there are so many doc's I know that are so burned out, they need to go on a "Rest of their life vacation" and bring in the new fresh Dr.'s that know about RSD. I was so very lucky to find a primary dr. who knows, treats many of his patients with RSD. He is a God send. Keep on looking, Pookie.. they are out there. Please stop making yourself worry so much. You should know what you can or can't do with this RSD
Anyone who is that afraid of going to their doctor's, should not even give him/her the time of day, Pookie. As for your daughter, sit her down and tell her the honest to goodness truth, that mommy is sick(She most likely knows more than you know anyway) Mine was trying every which way to get my attention and I gave her as much as I could, told her, ok.. mommy needs to rest now. She used to try to get away with saying, why are you ALWAYS in bed? why aren't you paying attention to me, until I told her, you know.. "The world doesn't revolve around you, little lady"! She was getting everything she could get, toys, new outfits(She is into that Hannah Montanna chick) LOL and Clothes.. you name it from my hubby and she turns around and says to me, see, daddy gets me whatever I want!! Oh my, that was lived short! I made him take everything back except for the vitamins for her and socks. Now, she has compassion, understanding, as I told her, how very, very wrong it is to USE someone and especially her mom. I love her too, but they need to understand in this day and age, it is not all about them! I hope some don't think I am mean, but this was the only way to put a stop to it! As for my hubby doing this for her, doing that, or she would whine the "blues", he got an earful from me too. Pookie, don't give in. You mentioned in another thread how spoiled and can be downright mean to you. Well, tell her the buck stops here and you won't tolerate her behavior while your down with all this junk, dealing with RSD, workers comp, the stupid DR. Your plate is already full, Dear, so first things first. Take care, and DO for YOU! Take a warm calgon "Take me away" bubble bath, read a good book, drink some herbal teas. You need to pamper yourself. If you don't, who will? ~Love, Desi [/COLOR

I have rnd, semi the same thing as rsd, and mine spread from my stomach to my wrist to both knees and then to both ankles. Dont listen to the er doctor go to a specialtist for rsd they will be able to tell u the truth! Good luck

Hey Desi,

Really sorry to hear about the spread of RSD - has your PCP confirmed it? are you still having problems from your legs? Have they suggested anything for it? I'm glad the fentanyl is helping you...

As you know I have full body RSD - spread from right wrist to right leg then left arm, left leg, hips, pelvis, spine, neck, face and mouth and now internally stuff. Such, Such fun! oh well. Saw my neuro yesterday who said my only hope is if I have the DBS as otherwise I will just contiue getting worse. He was asking me if it's worth me contiuning with meds as don't appear to make much difference - but I'm not willing to come off them! I remember life without them, especially the ketamine!!! yes, I'm in pain now but if we're late with a dose or the UK stop making it for a couple of months then I REALLY feel it! Oh well, but he botoxed my neck and left arm and told me to pray hard that it helps my left arm.

Have you been able to look at whether Bill can use a HBOT centre? you might be able to as well. Really hope he is doing better soon, and you of course my dear.

~Tons and tons of love to you Desi, and to Bill...

Love ya

Rosie xxxxxx

yeah, now that most doctors know of my recent diagnoses of rnd/rsd they are very against giving me pain meds of any kind. I guess they still have in there head since im a teenager i will be a drug addict lol but im going into dr sherrys program soon, i hope you feel better, once it spread to my knees ankles and wrist it was hard to do anything but im getting there one step at a time good luck:D

Hey Lady!!
Good seeing ya Rosie!! Are ya still being behaved over there? LOL
I sure hope so!! How's your man these days? Ok, anyway, yes my PCP did confirm the RSD. Like I mentioned in one of these posts, he has many patients he treats with this disease. Frogga, it wasn't my legs that I was having problems with, it was mainly my ankles swelling up. My PCP gave me pills for fluid/swelling and he ordered me the support hose that I lost around a week ago! hmmm... I will have to look for these. Also he wants me to elevate my feet. Hey, Rosie, I finally heard from SSI and my lawyer is putting this through pretty fast. I was denied the first time. So, I received yet another letter from SSI(My lawyer got one too, letter) It said Because I disagreed with the first decision on my disability claim filed with social security administration, they are reconsidering this decision. And If the hand/ wrist specialist I went to also, does not write to them within 10 days from the date of this letter, they will make the decision on my claim without waiting for this report. So, it indeed is a WAITING game with them!! I just hope and pray that I do get it!!
Rosie, you mentioned the Dr.'s wanting you to have for your only hope, DBS?? Then you not wanting to get off all the meds?? I don't think he can do that! He has to ween you first. Who knows?? Maybe the DBS will help and you won't need the meds?? Look at me talk!! LOL I am on so much too and am still debating if I want the SCS or not!! I have so much to think about. A good buddy of mine on this board has it, loves it!! Still, some have it, say the leads move around, Oh, I don't know?? decisions... decisions.. eh? :) LOL
As for Bill, he may be coming home next week, Rosie!! They mentioned another month and I firmly believe the prayers of all have began to heal him. Please keep him in prayer that the docs do let him come home. I go up there so much, the cost of gas being so high, still, I don't care! I miss him. It's true, you never know how much you miss somone, until their gone for a long time!! I hope you come to the right decision of what you want to do Rosie. I am sorry that your still not feeling so well. Tons of love to you, too Rosie! ~Love, Desi :)

I am new here, but wanted to respond to this. I was diagnosed w/ rsd approximately 17 years ago. I was one of the lucky ones and it went into remission fro about 8 years, that is until last summer, when it came roaring back. The rsd is in my right leg, since returning it has spread to my hip and is starting in my spine. When I was first dx I couldn't find a neurologist to even see me, whent hey found out the dx they didn't want to touch me. The Pain Clinic I went to was behavior based and wanted to desensitize the rsd areas, personally I found this barbaric, almost as bad as being told by numerous doctors it was all in my head and referring me to pschiatrists, because I was imagining all of this. Well fast forward things have changed, but I still haven't found a Neurologist to see me. The Pain doc I went to put me throug an EMG, which we know usually doesn't show anything, then wanted me to take Lyrica. I tried Neurontin years ago, had a very bad reaction to it and didn't want to try Lyrica, not to mention the weight gain from it. His response to me was well call when you decide you want to take this. I haven't called him again. The bottom line I have researched and I know a lot about this, I've been dealing with it for years. The sad thing is we know more about this disease then most doctors. We shouldn't have to educate them ut sometimes we do. I have found most ER doctors don't know much about rsd and act llike it is all in our heads. Don't let them get to you, find a doctor you trust and good luck.