Monday, October 15, 2012

What's going on with me?

As you may or may not have noticed, I've been incredibly absent from the blog world (and the Twitter world too).  It's not because I've lost my voice or have run out of topics.  I have a list about 10 topics long that I want to post here.  I just haven't been able to.  I've been too exhausted.  Too exhausted to do pretty much anything.

It all started in August.  I started having horrible leg pain.  Both legs hurt from the knee down.  All the time.  I didn't tell anyone about it for like 3 weeks.  Then is started hurting in my hips.  And this wasn't muscle pain.  It's what I think bone pain would feel like.  I can't put into words what exactly it feels like.  The best I can do is call it a constant, burning, pain.  Nothing helps relieve the pain either.  Once my hips started hurting, I finally told the Hubs.  Now I have a pretty high pain tolerance so when I was crying every night from the pain, the Hubs knew I was seriously hurting. I was also dealing with extreme fatigue.  I would fall asleep at like 6:45 and sleep until 6:30 the next morning and wake up feeling like I didn't get any sleep.  Even Noah asked if I was feeling ok because I was going to bed before him.  I ended up getting in to my doctor's office (after a few days of trying to get an appointment) and my journey started.

The only thing she could come up with was that I was having some sort of neuropathic pain.  She was convinced there was something with my back (which didn't all).  But instead of jumping right to CTs or MRIs, we ran labs for anything possible.  Differential diagnoses included Lupus and RA.  We even tested for syphilis, which I'm proud to report I do not have.  The plan was to see if there was something chemically abnormal before looking for another cause.  I was going to have to wait a week for the results, which I had myself convinced that the labs would come back positive for syphilis (that's my luck). {side note....I have never had any sign or symptom of this disease.  I just figured, in my Debbie Downer mentality, that I would end up with something like that} It was one of the longest weeks of my life.  So on Day 7, I was calling the office to see if the labs were back.  They said they were on the Dr's desk, which made me freak out even more.  So I waited hours for a return call.

That call came in the middle of car line and when I answered, it was my doctor on the other line.  I instantly panicked because this meant something was definitely wrong.  She calmed me down right away telling me she knew it would be easier to talk to me herself.  I just love her!  She knows how crazy I am and takes the time to take care of her patients.  She's a keeper!   She told me that everything came back good.  No lupus, no RA, no syphilis.  She did say that my Vitamin D level was low and that my Vitamin B12 level was on the lower side of normal.  We talked about my symptoms again, along with the fact that I am totally exhausted all the time.  We determined that I needed to take daily Vitamin D.  She said she could send me to a neurologist but they would probably treat my Vit B12 level first.  She said I could take it orally for 6 weeks or I could start injections.  I asked how quickly I'd start feeling relief with each route and she said she's had patients feel better after 1 injection of B12 so that's the road I chose.  I went in that afternoon for my first of 3 shots, 2 weeks apart, and fell in love with how great I felt afterward.

I was skeptical at first to admit I felt better after the B12.  I didn't want my head to be making me feel better just because I had a shot.  But let me tell you, I felt great.  I had 5 pain free weeks. I was a believer.  But, BAM, just like that, my pains came back with a vengeance.  This was last week.  I was due for labs to test my levels this past Wednesday.  I went in a felt miserable so I ended up seeing another doctor in the practice.  Poor guy had to quickly catch up to speed with my history and what I've been going through. After scolding me for not taking my Vit D (I'm a horrible pill taker, as in I can never remember to take them), he tried to figure out what's causing this.  He did a fancy little test of the sensation of my legs, noticed something a little funny, and then mentioned I'm mildly positive for Chronic Fatigue Syndrome.  My EBV should a past infection, which I have known was positive for years.  We just figured I had Mono or something one time I was sick.  But maybe not.  I said I knew my EBV was positive and he asked if I got run down easily.  Well hello....I'm the poster child for getting run down easily.  I've been like that all my life.  I get physically sick and end up feeling like I have the flu.  He said that is part of CFS.  We didn't stick around on the topic for too long.  We decided to do weekly injections for a month and to recheck levels, including a Vit D, after that 4th week.

I googled CFS and noticed the CDC listed it on their website.  I thought it was just one of those drug company disorders but I guess it's real since it's on the CDC.  After reading about it, it sounds like me.  I've had the blood pressure issues and everything.  I am not, however, diagnosing myself with this syndrome.  However it does explain a lot of things that I've endured over the years.  It's just something I'm going to keep in the back of my mind.

My B12 level didn't increase all that much.  It went from 301 to 421.  Nothing impressive. So I'm gearing up for my first weekly injection on Wednesday, courtesy of one of my fabulous coworkers.  I've been taking my Vit D every night.  I've even written a note to myself on my bathroom mirror as a reminder.

I'm just over the pain.  I am willing to do whatever I need to do to feel better because this is truly wearing on me.  I know I'm strong but this is nothing I've ever been through in my life.  I am in awe of all the people who deal with chronic pain on a regular basis.  It really does take a toll on your whole self.  It's tough, let me tell you.  I'm sick of always being tired.  I'm sick of my legs constantly burning in pain.  I'm sick of what it's doing to my life. I'm sick of not feeling like myself.



  1. I'm so sorry to hear about your pains. As a nurse who is constantly on your feet, I'm sure this only makes it 10 x's worse. I hope that your medical team can figure out an appropriate solution to get this resolved asap!! And I will pray for this exact thing. Blessings.

  2. So sorry, hope you start to feel better soon. I know it must be hard :-(

  3. I'm so sorry to hear this. This sounds terrible and like a major setback. I hope you start feeling better soon!

  4. I'm so sorry you've been going through such an ordeal, and are back to feeling bad after those glorious pain-free weeks. :( Hopefully you get some definite answers soon and will be feeling as good as new in no time!

  5. oh my gosh, i hope they get it figured out! no way could i function as a nurse or with a family like you have been doing. You are amazing. I hope the injections take care of it. :(