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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

HI everyone
Jul 10, 2003
I was thinking its been so long since I've been here, I'd kinda bring you all up to date on whats been going on...

My RSD has gone full body for the first time. My diagnoses was just June 12, 2003. I guess the reason the diagnoses was FINALLY made was because it got so bad it could be made. (I suppose). But, this last week was horrid.

Shelby's Nephew graduated from Marine Corp. boot camp July 2, and Shelby's whole family came down and all of them stayed in our little home. Well it was quite cramped to say the very least. The stress levels were at an all time high in our house. Shelby was yelling at me non stop, and all the looks she gave me were extrememly hateful ones. Her family was finally convinced by her that there wasn't any reason in the world to treat me with any respect, after all, she didn't. So, no matter what I did to be pleasent and entertaining and a good host, I was bashed left and right. I could feel the smirks every time I turned my back, and hear them talking about me every time I left the room. Every time I was alone with Shelby, she would tell me the ugly things they were saying about me, and she was justifying it.

She lost so much of my trust and respect this last week. She completely betrayed me, I felt.

The stress levels and the heat was just more then I could take, and my RSD fed off of all of it, and well, it kicked in full blown. Both legs, both arms, both feet, both hands. I felt like someone removed all of my bones and deep fried them, and then returned them underneith my broiled skin. Meanwhile, the muscles had been wrung tightly and twisted, and then put back in around the bones, incorrectly. I was swollen two to three times my normal size and in miserable pain.

I kept on trying to lay down and get some rest, but I was so uncomfortable, there was no way I could sleep. Meanwhile, I'm still trying to get used to my new drug therapy, and you know that the drugs themselves do a number on you too!

I was sleeping hardly at all, and getting into trouble for that too. Finally the day they were all going to be gone, MY mother called me from Alaska and said she would be arriving in California for a surprise visit that evening at 10pm. SUPRISE! I just sobbed. The next day I called my doctor and asked if I could see him immediatly to see if there was anything at all I could do for the agony.

Let me describe quickly my mother. Well, to sum it up, she was always an alcoholic, drug abuser. So anyway, for 15 years, shes NEVER once wanted to stay with me, but this time, she did, but only for one night. It went like this..
mom: I've been really worried about you honey. What did the doctor give you for pain?
ME: Oxycontyn
MOM: Wow.. my doctor in Alaska gave that to me for my back. You know mommy has a bad back. Well, Mommy cant get that in Alaska anymore (gotta love the way she talks about herself in the third person) because its illegal there now. Thats too bad, because its really the only thing that makes me feel better. *heavy sigh*
ME: Well, Im sure that your doctor prescribes you something he feels is sufficient for your pain mom.
MOM: Not really anything that works. Listen honey, I know how you feel about drugs, and that you're not goign to take yours. Why dont you let me pay you $100 for yours.. at least 10 of them.
ME: No way mom. I WILL NOT be your drug dealer, not now, not ever. I cant believe you just asked me that!
MOM: WHAT?!? What did I do? Im not asking you anything illegal! I'm so sure! Okay honey, what if I just take you out shopping then, can you "give" me 10 then?
MOM: *sigh* Well, then I'll have to go home then, because my back REALLY hurts.... *sigh*
ME: Whatever that why you're here?
MOM: You know.. i think I'll just go then...

And she left....

Anyway.. back to my doctors appointment...

He took one look at me and new we had to do more to get this into remission much faster then what we had initally planned. For the first time in my life, my blood pressure was even high. Thats never happened before. He said that pain will cause your blood pressure to rise. You could see without even touching me, how swollen I was.

He doubled my Topomax, and is now planning on raising the dosages as quickly as I can tollerate it instead of a scheduled raising of once a week. Im going to try raising it every other day if I can. This has caused a lot of nasea, but guess what, the swelling started going down a little bit today.

He also told me that the pain meds were not "as needed", like I thought. This is the deal... If my body feels pain, thats not good. That means its already too late, and we are going to have to start "patching holes in a damn" is how he described it. Since RSD patients sympathic systems mis-fire, once we feel pain, we've already lost the battle. Our body cries out "injury" and instantly we start swelling which cries out again "oh, more injury" which signals more pain, which then signals MORE swelling, then more pain, then increased pain, then even more increased swelling... and the vicious cycle begins. So, oxyContyn dosage was increased, actually doubled, and will be increased even more.

He's (Doctor) is going to get very aggressive against the RSD now, after this last week. I'm glad because I was so miserable that it was indescribable. I had no idea I was cabable of feeling like that and living! Well, with the drugs, the vomiting has begun. *sigh*.. Its not a bad vomiting, as in, its kind of releaving afterwards. Not the kind where you feel worse, so thats not so bad.

The swelling has reduced a bit today, and I actually got a little work done today, instead of stumbling to my office just sitting at my desk LOOKING like Im working with tears running down my face. Shelby said that if I had the ability to visit w/ my mother, then I have the ability to work, and work is more important. Shes making me feel horrible for the decline of income since i've been sick.

I'm starting to believe that I am alone. That nobody truely understands what its like to live in this skin, in this broken body, in this non-functioning, drug induced mind that screams silently, HELP!!!!!!!!! I'm starting to believe that nobody will ever understand this hell that I call my life because of RSD. (Really ****ty Day!)

I look okay, but I just want to sit and relax, and soak up regaining my strength, yanno? I dont wanna start sqeezing in everything I can into the hours that I am able to move. That doesn't make sense does it?

I had no idea it gets this bad guys... I had no idea.
I had no idea that people could be so cruel when you feel the worst.. its like kicking you when your down! (or is it that this disease kicks you when your down?)

Anyway.. thanks for letting me vent, and kick and scream... Im sure I'll feel better soon enough...


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