I finally got a call back from my pain doc this morning and I talked to the nurse. I asked her about my foot just swelling up out of the blue and you wouldn't believe what she told me. They have never had a patient that has had that happen before unless it was associated with an injury. So according to her you have to have an injury for rsd to spread. Is that true? I told her that what i have read about rsd that it can spread. I also told her that I did have a severe sprain to that foot less than a year ago where my foot turned all purple. She then said that now that she heard that that it is very possible that it is rsd in my foot.She also wanted to know if I had seen my family doc for it and I told her no becuz i thought that it could be rsd. THe other reason that I didn't tell her is I don't have insurance so I can't afford to go to my family doc.Besides I want work comp to pay for anything and everything I can possibly make them do for everything they have and are putting me through. I do have an appointment with my pain doc on Monday at 4:45. So we will see what they say. I am going to print out some of the articles that you guys have posted and take them with me just so the doc can read them for himself. Thanks again. Please if anyone has any input on what the nurse said from the get go let me have it. Thank you.

Sincerely,
Screwballpookie

Well.....the 1st biggest thing is NO you DON'T have to have an injury for rsd to spread somewhere else. If you have rsd and then say, sprain an ankle, then it is possible it could spread but then again, it might not. I've known many over the last 5 1/2 years that have sprained something and had no spread. I really think it's, as with all things rsd, an individual thing.

I started with rsd in my left knee/lower/leg/foot. In 11 months it spread throughout my body. I suffered no further injuries to my person in those 11 months either. No even a stubbed toe. Nope, it just went like wildfire through my poor little body with no help at all. Wasn't that nice?! NOT!! LOL

These docs really do need to talk to say, Dr S or Dr Harbut or Dr....buggers forgot his name, the one in Tampa. Anyway, they could tell these docs all about rsd and that it can and will do whatever it wants, when it wants! These same docs need to get their heads out of those stupid textbooks that tell them stupid crud like it can't spread! *sigh*

Hugs,

Karen

Hi just agree with Karen- these doctors have no excuse for not being educated on the spreading of RSD- Its ridicoulos RSD spreads in 70% of the cases. Good luck to you CZ

As a work comp case, let me give you a little advice:

1. If you go to a doctor that tells you your RSD hasn't spread and you think it has, ask for a referral to a neurologist. Do not wait. Ask for the referral and then go. A neurologist should be versed in RSD well enough to be able to tell the difference between RSD spreading and something else that may be going on. But as a work comp case and RSD it is imperative you go to a neurologist to get that diagnosis.

2. RSD does spread. Workers Comp does not want any of your doctors to say it has spread because this means WC has to (at some point) possibly pay for your meds and treatment forever. This is why a neurologist diagnosing you with spreading RSD is so critical. It is very hard for WC to fight a neurologist's diagnosis.

3. If you have been paying for your meds or any doctors visits relating to your work injury thus far, keep the receipts. Make copies. If the insurance company says they won't refund the money, don't listen. Write a letter to the insurance company explaining the reasoning for the treatment. Make a copy of the letter. Send the letter and a copy of the receipt (along with any forms you may be required to fill out (look at your state's WC site for medical reimbursement forms)) to the insurance company. Keep copies of EVERYTHING. Remember WC is a legal matter. WC eventually plays out in court. A court looks at the RECORD (all papers relating to your case including dr notes and any correspondence you have with the insurance company) when making its decision. Thus, everything you send to the insurance company is in the court's RECORD (and if it isn't you will have your copy that you made). So your receipts for treatment you sent them, they will be in the record too and will possibly lead to a pay off if you win your WC case with the insurance company.

4. Do not give up hope. RSD is tough, to say the least. Find a good neurologist and trust no one from the insurance company. Not even your adjuster. No offense, but they work for the insurance company. (Remember? The guys who don't want your RSD to spread because they don't want to pay for it?)

5. And if your DR doesn't believe you or gives you attitude, get out of there fast! Time is precious with this illness. Do not waste it on DRs who think their medical training has made them superior to you. You know your body. It's the Drs job to help you figure out what's wrong, not tell you they know your body better than you do.

Hi,
Sorry to hear about the problems you are currently having I agree with Desi that you don't have to have an injury for RSD to spread.
My leg swelt up a LOT overnight and my doctor admitted me into hospital as he was very concerned and thought that I may have either a blood clot or Compartment Syndrome - thankfully I didn't!!
It's so discusting that medical proffesionals wont listen and believe their patients and say that you need an injury for the RSD to spread - I hope things work out for you soon
Alison

I just wanted to thank you all for you input on my question about rsd. It really helps me to have you guys. I have had my rsd now for 6 yrs. and it sucks.The pain is unbearable. I do see a neuroligist, but I talked to the nurse the other day. Sometimes it just seems like there is enough info out there about rsd. I just wish things were easier. Thanks again for all the info it really did help me.

Sincerely,
Tracy