Curious on just how you are ascertaining if these are related to RSD, or if you are collecting general symptoms for anyone with RSD/CRPS? Because the docs went for the change in name to Complex Regional Pain Syndrome due to the complexity of the disease, the symptoms are just as varied from patient to patient, notwithstanding the commonality of: allydonia; parathesis; depression, insomnia, and most important of all....the PAIN after a trauma of some sort that the brain keeps the nerve endings firing away like a machine gun.
Now, admittedly, the complications from symptoms leave to the gray area...did the chicken come before the egg or vice versa? This is why I'm asking. If we can find some other common symptoms among us, then what you are doing is a badly needed. If, on the other hand, it is just a way for us to collectively see just how ridiculously long the list of symptoms us RSD patient suffer from, then I don't see how that would be productive or positive.
I wonder which way I would rather have my treating pain doc tell me about possible side effects most likely to occur, or future symptoms if I was at the beginning stages of RSD (which I am far from '98). I still wrestle with this on a day-to-day, & appointment-to-appt. basis. On one hand, if he doesn't tell me about any of it, and it does come to fruition, then I'm am surprised, if not shocked, and may not be prepared to deal with something else instead of if he would have told me about some sort of side effect, or the fact that my RSD could spread to some other body part. On the flip side, if he did, then I would wonder if my symptoms were psychosomatic (all in my head) because I knew in advance it was possible. Interesting. I guess in the end, you have to know yourself, and truthfully answer what would be best for you (or your family member if a minor).
I am a person who usually tries to see the positive (especially since my diagnosis). I've been described by my doctors "you're one of my patients in the worst pain, with a horrible incurable disease, but with the best attitude I've ever seen." Like I said, I "USUALLY" am. With RSD, I have my bad days where I can't quite see the positive in sight those days; I'm human. But I've also been called the "1%'er" because if there are 100 patients (despite condition, disease or illness) I'll be the 1 person with complications, or some weird and wild thing to happen to them. LOL. I've grown to love the nickname, instead of thinking I'm some freak now.
I know, you're thinking, who the heck is this person? I'm brand new. Power is knowledge and all that stuff. Found RSDSA's FB page, and kept searching. I used to lead a regional support group; downloaded every bit of info I could from the internet for those meetings; invited speakers to attend (even lawyers to explain BWC and/or disability). and all around general support. I found that once they had the knowledge, and unfortunately, once they saw the possibility that it COULD spread systemically like it did for me (10% actually) attendance died down next to nothing. Sent out postcard surveys complete with postage for ideas: "everything great..wouldn't change a thing. Just didn't feel need to come any more." I think since RSD isn't curable (yet), then support will always be necessary.
I am extremely grateful for the online sites! Just want people to be careful on what they ask for sometimes, because it can be detrimental. However, that being said, I have had some weird allowances added to my claim: DVT (blood clots from being immobile-flow thru); sprain/strain left medial cartilage knee (flow thru); both of which are now in the stage of being added to my PTD because they were both allowed after my PTD was approved. Bottom line, my attorney said he's gonna get me more money (he always gets 1/3 so not surprised he contacted me out of the blue for this). Just an FYI for any of you on PTD that have any other claim allowances added since.
Additionally, attorney is working on adding "urinary retention/neurogenic bladder" (after pain pump placement with morphine made it impossible for me to urinate); and most recently (last week) my doctor has dx me with "thoracic facet joint disease" that he told BWC is directly related to my RSD (again, both are flow-thru...I got this problem because I already have RSD). Hope this helps.
I am in need of assistance to see if anyone has had thoracic facet joint injections/blocks done before? Asking because all other blocks (including RFA's) left me numb for about 12 hours or more, and this one did not at all. I am having some pain relief now, 6 down from 10+ Thurs a.m, and have no idea how long these last. Docs have also added clonidine to morphine pump, plus oral keppra (1500 mg/day) with no relief. How long do these blocks last?
Thank you for reading this lengthy posting. Please understand that I mean no disrepect, just am cautious individual who knows everyone is different. I hope to get to know you all better. Thanks for your time.