Fibromyalgia…? ANTI-POLYMER ANTIBODY??!!??
So I am not sure how to start this, but I have recently been in and out of the doctor and hospital.. and I probably would still be seeing the doctor weekly if I hadn’t started a new job that prevents me from doing so. The first day was March 31st 2012, when I woke up around 7:00 am. It was a usual day, woke up with David to see him off to work (he works Monday through Saturday) and right before he left I got this weird feeling in my head.. the best I could describe it, was very sudden and dizzying. Felt like I was drunk without the warm fuzzy feeling.. and I mean drunk-pass-out-on-the-floor- in your own puke kind of drunk. I layed down, sent David off and told him I would be fine.. and it didn’t go away.. it felt worse and worse.. I felt like I was going to pass out or my head was going to explode.. either of the two. I wont lie, I was terrified. I made my way up 4 flights of stairs to my moms room. When she talks about it she uses the words “she crawled into my bed and hasn’t done that since she was a small child”. I didn’t know what to do and thankfully my mom has a blood pressure cuff that I immediately grabbed off of her floor and attached to my arm. I was shocked when it stopped and my blood pressure was through the roof and my pulse was 116. To me, I don’t know what pulse rates mean.. I was kinda worried about how high it was but wasn’t sure of exactly the implications. I took my pressure probably five different times successive and as it was slowly going down, it didn’t go any lower than 113 but my blood pressure had dropped to below low, because low (98/50) is about normal for me. But it was lower than that. At that point I looked at my mom and asked her to call me an ambulance. I got the usual “Are you sure?” but I was.. I was very sure! They got to my home about 10 minutes later.. the longest 10 minutes EVER! But my pressure was extremely low and my heart rate was what I have come to learn to be sinus tachycardia. A little weird even for my style. They strapped me up to the little bed thing, and I was shaking like a leaf. I suppose I was totally freaked out!!! Well I got to the hospital and they did a host of tests on me to see what was going on, including 2 different EKgs and a chest X-ray. Well… the crappy thing was they didn’t find crap. Not a damn thing (excuse my lang but I was frustrated) the only thing was that my potassium level was low. So, they send me home with an order to take some potassium. I’m sitting here thinking OMG WTF I just felt like I was going to die for nothing??? WTF??? Why??? So I stopped drinking caffeine, slowed down my smoking dramatically and took and ate a decent amount of potassium.
One day, went good. The day after… not so much. I was just sitting with my son watching TV and boom! A feeling in my chest.. and instant dizziness. I couldn’t believe it. I tried steady breathing, fresh air, waiting it out, nothing helped. I ended up asking my fiance to get out of school and bring me in to the hospital. He wasn’t too pleased but wanted to make sure I was ok. When I got there my heart rate was 125. WOW! I was shocked because it had been 3 hours since it started and I felt like it had slowed down so in my mind I am thinking.. how high was it?? Bleg! Well.. this time they tell me.. my potassium is normal and there’s nothing else wrong with me.. I can’t believe it at this point I am about to freak out totally because I feel like I am dying and they are telling me there is nothing wrong. I tell the doctor this and his response is, “I’m going to give you something to calm you down, not make you loopy but just calm you down” and I am all for it! So they come in, give it to me, and I’m then told I was given Ativan. I just nodded my head like a good little girl and an hour or so later when my heart rate has brought me down to a cool 70 bpm, they send me home. Got a decent nights sleep but woke up a lot which had been pretty usual for a couple of months prior.
I woke up the next day and immediately made an appointment with Dr. Sam. I went in that same day, worked out really well. He told me he was going to give me a medicine to slow down my heart rate. A Beta-blocker called Bystolic. I took the first one that day, instead of waiting till morning because I felt horrible like I was going to end up in the ER again. I took it, felt kinda better actually.. for a while. About a half hour later I felt it hit me. Like a ton of bricks. And that’s how it always came. Large and in charge out of nowhere. Very very sneaky. I needed help.. I was at the point that I didn’t know what the heck from who-d what. I was scared. Still am honestly but we can get to that later. I went to the ER this time, my heart rate was fine.. well a little fast at 80-90 but this time they looked at me crooked. I told them about the Bystolic and they said for me not to take it until I talked to my doctor and asked him why I was on it. Here comes the blood work up.. this time my thyroid was low?? Low? Weird. the doctor then proceeded to tell me he was going to give me another dose of ativan and send me home with a little prescription for Xanax… I was then the one giving the crooked looks. So I made another doctors appointment and went in yet again! He did a full blood workup and sent me home, telling me to please take the Bystolic, not to listen to the ER doctor. He also prescribed me 2 other medications which I am still currently taking, one is for some severe stomach pain I have been having and the other was for vertigo. Meclezine, not sure if I spelled it right. I asked him what the difference between Ativan and Xanax was, and he then told me that Ativan was a slower acting longer lasting form of Xanax. I couldn’t believe they didn’t tell me this outright at the hospital, but at the same time I should have taken authority over myself and instead of being distracted, I should have asked what they were giving me and why. Turns out all of these doctors have been looking at me like I had anxiety, technically I do, but thats not the point. They didn’t discuss other options with me, they just told me to go to Dr. Sam and ask him, and he didn’t really know I was on Xanax until my fallow up appointment a few days later. At this appointment I was informed that all of my blood tests were normal (INCLUDING my thyroid) yeah that makes sense right!!!! Except one thing… he described it so fast that I am not even sure I got it on my head right. Anti-polymer antibodies? When I asked him what it was the first time he told me something to do with arthritis and to not worry about it. Well a couple days of feeling horrible and random bouts of palpitations and high heart rate, I went BACK in to Dr. Sam. This time looking at him literally asking him to prescribe me Xanax. He was ok with it considering my dose is .25 mg which you could probably feed a frog without killing it. But then when he mentioned the APA again I had to inquire further… he said a bunch of stuff I couldn’t understand then looked at me straight away and said “your body is fighting itself” plain as day, and it didn’t seem to effect his demeanor at all.. I was shocked, so was my fiance. I can’t get much information from Dr. Sam, due to his uncanny ability to keep his eyes glued to my chart, so I did my own research. When I started getting info coming in, I was scared.. then anxious, then worried and lastly sad.. very very sad. What I found is
Chronic widespread pain, tenderness at more than 18 points on the body
ringing in my ears
tooth issues/ sinus infections and allergies
Jaw gets tired when eating?
bowl and bladder problems
numbness and tingling
loss of memory, short and long term
and is usually associated with stress, anxiety and depression (ptsd)
prolonged muscle spasms
weakness of the limbs
HOLY S### Every single one.. what the.. I couldn’t believe it. Issues I have been having for years, and attributed as normal or at least normal for me?? The kicker… it all goes back to a disease that you can’t even prove! Go figure the doctors didn’t find crap. There was nothing to find besides the APA factor which upon further investigation on my part, has everything to do with
No one even sees it as a real disease. This is sad. I don’t think of what to do, I think of how to do it. How am I going to talk to my doctor about things that the only test that exists that can point to it, I tested positive for? he didn’t mention this.. even though I explained all of my issues with him. Yuck. Now I don’t even know what else to write. Its pretty distressing knowing that I could have something that’s nothing and there is no way to treat it because its not even treated like its real? I don’t know.. I feel very lost on this. That’s it..