So frustrated I am going to scream! ***VENT AND LONG***

[greenie11]

I am so damn sick and tired of being sick and tired. I have always suspected that I don't have Fibromyalgia. I have always suspected that I in fact have RA.

 

Here's how the diagnosis happened.

 

Went to MD for pain. MD sent me to idiot rheumatologist. He did blood tests and told me to take tylenol (like I wasn't already) for pain. Rheumatoid factor came back negative. He then writes in my medical file that "it appears I have fms." No definate...APPEARS.

I then go to see old MD. She does a tender point test (AFTER I HAD BEEN IN A CAR FOR ALMOST 18 hours the day before) and says "yup, it's fms cause you have 15 of the 18 tender points." I had been in a fricking car for 18 hours the day before AND 4 days before that b/c we had just gotten back from my divorce hearing. That would make anyone's body sore and tender.

This same MD tells me 2 months later, after that Lyrica made me hurt worse that "maybe I don't have fms after all."

 

THEN she tells me a month later that "fms is mostly psychological anyway you know" and that "she should pull me off all meds because that's what the Mayo Clinic would do."

 

After that first comment, I put myself into the VA healthcare system hoping for better.

 

My MD now is decent. She does her best to help. She is treating FMS based on the fact that the two previous idiots dx's. 

 

I DON'T HAVE FMS!

 

My pain isn't muscular, it's joint. I don't hurt all the time, only when I first wake up and after strenous activity. I have fucking knots showing up on the bones of my right hand. Want a pic? I will gladly take one if someone wants to see it. The knuckle on both hands, both middle fingers (which btw is where the knot is) is raised ungodly higher than the others. 

 

I know it's just a dx. I know its just a name. But it's the correct treatment! NONE of the FMS treatments have done any good. The accupuncture helped for a bit, like hours, and I thanked God for those pain free hours, but NOTHING has worked!

 

If the FMS treatments aren't working then maybe it is something else!

 

My last sed rate? 87! I don't know what the average is for ppl with FMS dx's but considering the norm (high end) is 0-20mm/hr, that seems a bit high to me. I hadn't been hurting anymore than the norm when it was taken. No abnormal pain for months which to me says that it always runs that high.

 

I don't know. I am so sick of this. I feel like I am a sheep being herded into a generalized dx and no one wants to take the time to find out the real problem. 

This is my life we're talking about here. The quality of my life. I can't even hold my 4 year old anymore. I can't sit on the bleachers and cheer my stepson on while he's playing football (happened tonight), I can't walk more than 15 steps without pain. I can't take a bath because I can't get back up. I can't shave the backs of my legs b/c my legs and arms won't manuver that way anymore. Do you know how embarrassing it is to ask your DH to shave your legs? WHEN YOU'RE ONLY 27! I can hardly even wipe my own ass now b/c my arms don't want to rotate back far enough to reach past the mound of ass back there. (Okay, one joke...but dead serious too.)

 

I can't go on like this anymore.

 

I have a dr's appt on the 28th. I am thinking about saying fuck it and scheduling an appt with the Mayo Clinic. The MN clinic is less than 2 hours from me.

Sorry for the rambling. Sorry for the anger. I just needed to get it all out.

[momofkids]

Sep. 9, 2009 at 6:42 AM

The mayo clinic sounds like a good idea to me.  I also want to suggest you not take your past medical history or have it forwarded on.  Tell them you would like a fresh look at your condition without influence from previous physicians.