Quote:
Originally Posted by DianaA
I am so sorry to hear of your treatment by the physicians and nursing staff. I think ignorance is probably key here. So, you must advocate for yourself in a big way. From the sounds of your posts....I'm sure you can.
I was diagnosed early on as well. My injury was in July 1989 and I was diagnosed in August 1989, but.... Also, my brother is an ER doc, who has worked at Lake Forest in Chicago where they treat a lot of athletes and he also diagnosed me. Still, I was subjected to treatments that did not benefit me through out the years, such as Upper Thorasic Radio Frequency Sympatectomy, surgery, 3 series of 10 blocks, PT and meds that did more harm than good. I must say through all this I had amazing doctors that really cared, but RSD is still somewhat of a mystery and in 1989, rarely mentioned. Research and keep an open mind. Think LEAST INVASIVE! Try and keep a positive attitude toward your final desired outcome as much as you possibly can. Also, when dispair sets in....let it out! Here is a good place or with someone you feel safe or a therapist. Again HBOT gets the thumbs up from me!
All the best, Diana
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Funny.....you can tell already that I'm scrappy and take little crap from people (perhaps why I have few friends???). Yes, I am my own best advocate. I really do not trust docs in general.....have been fighting for years trying to get them to properly treat other health problems I've had (TMJ, back problems, etc...). So, I am used to chronic pain even before this happened (I've adjusted to it). At least this is something I can PROVE to them (I can't "fake" my leg turning bright red immediately or my foot swelling). That sounds horrible to say that I am relieved I had these things so early on where the diagnosis was unmistakable. I've had all these other vague ailments that I can't prove but have suffered from nonetheless. I actually feel blessed....so many other people, such as yourself, suffer for months or years before diagnosis. The TMJ and back problems are more subjective and less easily proven, though no less real.
I am naive enough to think that this block I'm having will "cure" me. I am convinced (denial) that I have a "mild" case of this that will resolve quickly. I really will just take this one day at a time and do the best I can with each new day (no, I'm not usually this optimistic.....I've been through too much bad stuff in my life for that!! I'm just too tired to think any other way right now!!).
How soon after your diagnosis did they try a block??? I do know that little was understood about the disease 20 years ago. I am so sorry for the road you've had to travel with this. Have you ever had a "remission" (I tell people, a misnomer of terms in the case of RSD)?? Fortunately for me, I enjoy reading medical stuff and understand most of it easily.
Yes, I agree....the less they poke on me the better. I will be very vigilant to see how this first block goes. If it doesn't help, I won't have more. I am hopeful only because I had the surgery on December 3, the symptoms started on the 6th, so I'm very early on in this to have the block (I've fought every step of the way to get in the appropriate doctors). I'm not encouraged because I've had steroid injections in my spine in the past that didn't help at all and actually made me worse. I quit after the first two. I know these blocks are different, though, so we shall see.
We researched the HBOT......can't afford it. Hubby out of work for a year.....we're financially screwed right now anyway even before this. See??? No false optimism here!!
Anyway, thanks for taking the time to write. It literally means the world to me to talk to actual people (albeit virtually) that are surviving this and understand what it feels like!! I hope to reach many other people through this forum and give them encouragement and support just as you have me!!