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Tuesday, October 4, 2011

Fibromyalgia...Is it really??

I've been putting off writing anything about this topic, and have only shared the most recent information with a select number of people.  Ive been going back in my mind over information from the last at least TWO years.
It actually goes back beyond that.
I have had issues with pain in my joints for years--and by years, I mean all the way back to high school.  I NEVER played sports, so I can't blame the pain on anything like that.  About a year after I graduated, I actually went to the doctor that my mom had been taking me to.  Long story short there--he said he wasn't sure why I was having so much trouble with my knees hurting.  He put me on an anti inflammatory, and sent me on my way.
I've had issues with my knees hurting off and on ever since.
I have just tried to blow it off and ignore it.  As the years have gone by, its just gotten worse.  I had a hard time getting down on the floor with my kids in my class, and then had an even harder time getting back up.  Hurt horribly to walk up and down the stairs at church, so when I could, I'd use the elevator.  I have had ONE time that I can remember that the pain levels decreased.  I was pregnant with my daughter.  A few months after she was born, all the pain issues returned and increased.
I started REALLY complaining about it and mentioning it to my primary doctor.  I was not sleeping--which I'd dealt with already for several years anyhow.  Something about my son being dx'd with an chronic incurable disease, just messed my head up and instead of sleeping, I was wide awake, the wheels in my head constantly turning and spinning 100 mph.   But the pain became SO bad, that it was all I could do to get out of bed of a morning.  My feet and my legs would hurt so bad.  I just couldn't hardly walk from the bed to the bathroom.  Which was only a couple of feet!  I was tired all of the time--and I don't mean needing a little nap here and there, I was EXHAUSTED.
Chronic fatigue syndrome.  That comes after having a case of MONO so bad when your 19, the the doctors tell your parents that you will have problems with fatigue the rest of your life.  And not only that, but that if you ever had kids, that you would have to be watched closely for severe fatigue.  And let me just tell you..I did indeed have trouble with both.  To this day, if I say I am tired, I am just that, tired.  If I say I need to lay down and rest, I NEED to lay down and rest.
I recently went to the doctor to have some blood work done.  I'd had a few days where I felt rather odd, so I checked my blood sugar with an extra glucose meter we have.  Type 2 Diabetes tends to run in my family already.  And with Colton's Type 1, I don't wanna just blow weird feelings off.  I had an A1C done--the result was a 5.8.  Its a tad high for a 'non diabetic' and means that I am at a higher risk for type 2 D.
I also had an ANA ran.  An ANA is an  antinuclear antibody test.  It is used to determine and diagnose auto immune diseases.  http://labtestsonline.org/understanding/analytes/ana/tab/test
Now, before I go ANY further.  I must back up.  So here we go beep beep beep beep..backing up....beep beep beep.
When I went to my primary doctor to discuss the way I was feeling at the time--not being able to hardly walk when I got out of bed, feeling so exhausted, feeling at times like my legs were just going to give out.  You know what it feels like when you have the flu?  Ok, take that achy, tired irritable feeling and magnify it like 3 times.  Makes you feel like you've been hit by a Mac truck.
I was almost in tears as I told this doctor the way I was feeling.  So, he did blood work then.  He ran an arthritis panel, and went ahead and sent me to a Rheumatologist.  That particular arth panel came back 'normal' as he told me.  I have no clue what the numbers for that test were though.  So here I start seeing this rheumy.  I remember that day very well.  I went in, filled out paper work and waited and waited and waited.  Gotta LOVE doctors offices!  He finally came in and started asking me a series of questions.  He noted all of my answers and proceeded to then do a series of pokes and prods all over my body.  He started touching my back/shoulders and I thought I was going to jump off of that exam table.  I mean I wanted to say, "DO NOT DO THAT!!"  After checking out my joints and asking me more questions he said I clearly had fibromyalgia.
He never suggested doing any x-rays.  He never mentioned an ANA--which I had SEVERAL people ask me if I'd ever had one done.  My response was always, "No, whats that?"
I quit seeing that particular rheumy because he made me feel like he was rushing me out of his office each time I went in for an appointment.  He'd ask me if I was feeling any better, and I'd say no, and he'd just up the meds he put me on.  Lyrica--I don't recommend it.  I couldn't tell that it helped any.  All it did was make me gian weight and make me irritable more than I already was.  When I quit seeing him, I started seeing another doctor here where we live.  I went over all of what the rheumy had said to me.  She went from telling me, "Well, we really don't treat fibromyalgia in this clinic..." to telling me, "I'd be glad to take care of your medications, and your fibromyalgia if I can help you."  I made a point more than once to say I was curious what an ANA would look like.  She never would run one.  The rheumy never would run one either.  He said it was pointless--b/c if I'd had a 'normal' arthritis panel, then an ANA would be normal.
Ok, now we are up to NOW.    I went in to see a different doctor in this clinic here.  All I did when he said he wanted to run some blood tests was to say, "I'd like to see if you can run an ANA on me as well."  He asked why I wanted it done.   All I said then, was that there had to be SOME reason for all of the pain in my joints--my knees, elbows, hands, fingers, toes--yes my toes.  My TOES hurt and I have to stretch and squeeze my toes together until they pop.  My most recent "symptom" is my hand going numb and tingly.  I thought it was just when I was driving--b/c of the way I rest my hand on the steering wheel.  But, I notice it when Im just sitting in church listening to the sermon, and even when Im just sitting watching tv at home.
And so, I got the results of the rest of the blood work yesterday.  They said that all of the results were good; but that the ANA came back positive.  I was glad at first, to know that Im not just imagining all of the pain I have.  But then I was ticked off at the same time b/c I had TWO doctors within months of each other basically tell me I didn't need an ANA ran.  Um, HELLO??? I obviously DID need an ANA ran.
It not only came back positive, but it came back a high positive.  Some of you reading this may know what they look for.  The titer number was 1:320   Believe me, I know, thats high.  Could be higher.  But just the same, its high.
I do not know what this means, I do not know what they will do next.  More tests, Im sure, as well as sending me back to a Rheumatologist.
So, do I really have fibromyalgia?  That may ineed be all it is.  They may tell me its Lupus, or some other auto immune disease.  All I know is that I am hopefully finally going to be getting some answers to the questions I've had for several years now.

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