Wednesday, October 20, 2010

A diagnosis, finally

I'm deciding to blog about this subject for 2 reasons:  this blog is our family diary and I'd like to have it documented and also it may explain some of my future negative, bitchy, senseless posts.

I've mentioned before that after having Lauren 19 months ago I just haven't felt the same.  I attributed all of my aches and pains to hormones, something that's not all that uncommon.  I figured I did quite a number on my body in a short amount of time.  Being pregnant or nursing from 2004 to 2010 - it can screw a girl up, right?  But months after I finished nursing Lauren and things still didn't get better I decided to pursue it.  Why am I in my mid-30's yet some days my feet hurt so much I can hardly walk?  My fingers hurt so that typing is uncomfortable?  My shoulders hurt so that sleeping on my side isn't even an option?  None of it made sense so I went from my OB to my PCP to a Rheumotologist, and then to a second Rheumotologist.  I've had more blood taken in the last 2 months than you can imagine.  All of my bloodwork is consistent in telling us one thing - I have inflammation in my body.  DUH!  But what does that mean?  Well, long story short it's not Lupus, and not RA.  All of the symptoms I have mimic both conditions but there are just a few minor things I do not have which can eliminate those.  That's a good thing.  Finally, the conclusion is that I have UCTD (undifferentiated connective tissue disease).  It's the least destructive of the other arthritis-based conditions so that's good.  What's not good is that it still hurts.  Some days are great, some days are awful, and there is no telling when or what or why.  That's frustrating.  I'm a month in to taking a drug given to RA and Lupus patients which should be effective in minimizing my symptoms once it kicks in.  Prednisone works if I have a flare up but other than that I hope to be steriod-free.  Fatigue is one symptom as well so I do nap now and then but I try really hard to have the kids not just see me laying around.  This is not something they need to know about although on bad days I let them know they need to chill out and entertain themselves a bit more.  Honestly, they are too busy fighting with each other to notice that I'm laid out a little. To Chris this is all an invisible, imaginary condition that I should be able to suck up and get over.  Isn't that nice?

Isn't all of that fascinating?  It may explain my more snarky of posts, however.  Somedays I just feel awful which pretty much turns me into a bitch.  It's just how it is.  It makes me sad that at my age I have this but it is manageable (for the most part) and just something to make me appreciate the good days even that much more.

Anyone else have this invisible, imaginary condition?  Or know anyone who is pretending to have it?   I'd love to hear someone else's experience.


  1. :( I've shared my thoughts ad nauseum.

    I love NPH. LOVE.

  2. I hope the meds work for you. I'm not sure you got my other message a while ago about my SIL with MCTD (mixed connective tissue disease). Probably similar. Like you, she is trying to be steroid free.

  3. Sounds exactly like my life in a nutshell. Found out it was my thyroid causing me to gain weight and feeling tired all the time. So I hit the gym 4 weeks into it and my shoulder is killing me go to the doctor today given a shot which hurt like HELL! Now on Prednisone... Kids and age seems to do women in meanwhile my husband on a fitness kick and climbed Mt.Whitney and started mountain bike riding wondering when I'm going back to the gym! Between being fully involved in volunteering at the school 2 days a week,keeping up homework,soccer practice 2x's a week, and now planning a jog a thon sometimes I would like a little time to myself. So yes I Feel For You!!!!!!Good Luck and Love the blog..Therapy for me...Thanks for hearing me vent... Jenni

  4. I've been "unwell" for months now with various conditions and minor illnesses. Been checked out and don't test positive for anything. Got an ultrasound to check out my abdominal pain, but that only showed a polyp in the gallbladder area. So I don't know what the dealio is, which is frickin' frustrating on the one hand, but hell, I'll take a big old frustrating over a full-blown disease any day! Sorry to hear you're in pain. And sorry I haven't noticed it. As Rod Stewart once said, "You wear it well!".

  5. i did not know you were going through this ashley. i also have an invisible condition that causes, pain, parasthesias and weakness in my arms, hands and legs. as well as overall fatique and brain mush! zero comes up in bloodwork. i have no nerve or muscle damage, which is a good thing. it is idiopathic. there isn't even a name to put to it. it's sort of like fibromyalga but the neurologist wouldn't event classify it as that. it's a hard pill to swallow. i just try these meds and hope they work. i wholeheartedly feel for you and hope yours work too. ((hugs!))


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