200th post! + More vertigo and pain.

So my last post was number 200 since March 12th, 2013 when this blog first started. I honestly can’t believe I have had that many. 200 posts in 2 years. Definitely doesn’t work out to one a day, one every 3-4 days maybe? I don’t know… Math’s not my strong point

I started the blog a while back to keep track of my symptoms and journey after being diagnosed with Fibromyalgia and Vertigo. I would love to say they are completely under control. They were for about a year, but the last few months they have been back. I just haven’t been blogging much about them.

It started back around August of 2014. When I got sick with that cough and they thought I had whooping cough. In the last 7 months my vertigo seems to have been slowly coming back and now it is bad enough that I am loosing my balance and falling again and getting nauseous.

The chronic pain is back as well. I constantly feel uncomfortable and my joints and muscles seem to hurt a lot. I have not really had an redness or swelling that I have noticed but find it increasingly more difficult to lay, sit or stand in one place for any length of time.

I am so bad at night the Cory has never came back in the bed from when I was sick a few months ago. I am constantly waking up and having to move. Even the new mattress did not help more then a few weeks. I get sensations of falling, sudden jerks (at night followed by the falling sensation) and feeling disoriented and nauseous almost on a daily basis again.

The pain keeps me up at night, makes me irritable and moody. I am missing work again (not nearly as much as last time), I am trying to push past it and keep going. I don’t like to be touched. Simply touching my wrist or shoulder can send me screaming in pain. I am so tired. Some days it’s a struggle to get out of bed but I am determined to push past it and think about other things.

I am coping with it better then I was before. I know what to expect this time I guess from having gone through it so bad the first time. I am being referred to the Atlantic Dizziness and Balance Institute again and also a Rheumatologist to try and see if we can get farther then last time and see if I can get back into physio. My family doctor suggested massage but honestly I don’t know if I can stand having anyone touch me right now.

I am not looking forward to it to starting the whole doctor thing again. Last time I saw a few different doctors all with their own opinions and no concrete answers. Just the diagnosis of Fibromyalgia which half of them didn’t even believe in. I am hoping that this time they may be able to come up with some concrete evidence of something. But I don’t want to get my hopes up to much.

A little update

I am so glad that blogging daily was not on my list of new years resolutions. That would have been a fail right off the bat! No posts in 15 days. I did not even reply to any comments. It’s not like I was too busy. I just sometimes can not get up the energy to turn on the computer after spending 8-10 hours a day on it at work. I know in this day in age most of us work daily on computers. But sometimes I just want a break. So I took one, without even really thinking about it.

Not much has gone on in the last 2 weeks anyways. We now have snow on the ground that does not seem to be going anywhere anytime soon. I have now realized how incredibly stupid it is not to have snow tires on my car. No I did not have an accident. But I feel like I might as well be in a tobaggan (like those olympic style ones) rather then a car. I am getting used to it and don’t mind driving on ice or hard packed snow but slushy snow scares the crap out of me and I hold my breath whenever Cory has the car. He is a good driver, so I really don’t need to be, he has only ever had one accident but he also is inexperienced compared to me.

Works going okay. I am working overtime this week. Just an extra hour a day but it is an odd shift, it was 11:15 am to 7:15 pm. I took an extra hour before so 10:15 am to 7:15 pm. I even went to the gym yesterday with Kristy (sister-in-law). Tomorrow is Friday and I am happy I have made it to the end of the week with some energy to spare. I plan on going skating at the Oval downtown which is an outdoor oval rink that was made for winter games a few years ago. I went last weekend and Erin and I went around twice. Doesn’t seem like much but it was 1 more time then the week before which was our first time going. My skates are old (15 years or so) but since they were hardly warn they are not that bad. Only problem with them is I (or someone else maybe…) put them away wet and the blade has some rust. I am going to look into a new pair next year or new blades. This year I just had them sharpened and hoped for the best. I made it around without falling. Then again I used to figure skate for over 12 years so it’s like getting back on a bike…right?

I find I am having issues with my balance again (not counting when I am on skates lol) and am getting dizzy spells and restless legs and pain in my back, legs and arms again. I am sleeping okay because of my new mattress and box spring and my medication but I am not getting as good quality of sleep as I should. Waking up a lot. I think I am going to talk to my doctor and see if there is a Fibromyalgia specialist or Rheumatologist that I can be referred to. I want to get back into physio and see if I can rely a bit less on medication. Getting pregnant while on Amitrypteline is probably not recommended though my doctor did not say anything when I said I want to try.

This post is so random and so scattered lol. Sorry.

Round two

I don’t know where to start but want to keep people update and am still hoping for some ideas, comments or suggestions on what I should do next if this keeps happening. I really am a bit lost. And I really need to get this figured out ASAP. Is there something important I am missing? Or that they are overlooking?

And sorry another super long post. And I promise I will visit some blogs tomorrow if I do not end up at the hospital again.

I left work by ambulance because of the same thing as Monday, only it was worse. I spent the morning alternating between coughing and struggling for air, it got worse about 30 min of taking my inhaler (Ventolin) and I got really itchy and my hands feet went numb again. I let a couple of coaches know and they called an ambulance.

The EMTs at first said that all my vital signs were okay while we were still at work, they asked it I wanted to go to the hospital so I said yes, I really felt weird and did not want to stay and have to have them send for another ambulance later as I had a little less then 6 hours left in my shift. The EMTs walked me out to the ambulance.

On the drive one of the EMTs (never noticed names) was talking to me and noticed that I had my hand on my throat and was struggling for air again. I was also having a hard time concentrating on his face. Everything was blurry and doubled. I kinda slid back in the chair and appeared to have passed out. At first he just shook my arm and that was enough to wake me, I told him I was sleepy.

He told me to not go to sleep to just stay with him and keep trying to talk. I did this one more time before they got to the QE2.

While that EMT went to register me, the driver came to stand by my wheelchair and was talking with me (pretty one sided since I could only grunt, shake my head yes or no (then get really dizzy), while talking to me, he moved closer and asked if I could putt the front of my top down a little.

I said yes and he asked if I knew how red my chest was under my throat and the cheeks and sides of my face. He said it was really warm to the touch, an indication of a severe allergic reaction that usually accompanies hives.

He asked if I had ever gone into anaphylactic shock and I said yes, 5 years ago. He picked up the phone can called in to the hospital. I didn’t understand what he said as it was all in codes. But the other guy started driving a lot faster and turned the lights on.

When we got there the EMT in the back stayed with me while the driver got a wheelchair. The EMT in the back with me went to register me while the other one brought me to the triage nurse. While we were doing that the other one came back and said “she’s going right into a room to be hooked up to the monitors”, just waiting for it to be cleaned.

A few minutes later one of them rolled me into the room and they both had to lift me out of the chair onto the bed as my legs were numb again and wouldn’t hold me. The numbness was traveling up from my hands and feet into my arms and legs.

By the time they got me in the bed I was shaking uncontrollably but felt warm. They got me a blanket anyways and then left.

Cory was there by then and was sitting in a chair beside my bed.

A few minutes later nurse came in asking me what was going on, so for the third time (EMT, Triage and then Nurse) I tried to talk but it was really hard. I could only get 1-2 words out at a time. After pretty painstakingly (on both our parts, but she was sweet) I was able to give the story again and correct a few things the EMTs got wrong or the Triage nurse did.

A doctor came in fairly soon and said he wanted to give me an Ativan in case this was anxiety related and then have a EEG and spirometry test done.

A few minutes later a nurse came in and he gave me the Ativan. I layed there as quiet as I could considering I was shaking still and still gasping for air. The EEG technologist came and and did the EEG which did not come out very good as I was shaking uncontrollably again. She left.

The girl doing the spirometry test came in and tried to hook me back up to the monitors as I had to used the washroom a few minutes before and she was concerned about my shaking, wheezing and whooping. She listed to my chest and had an odd look on her face. I think she could see on the outside I was wheezing and whooping when trying to breath but you my lungs were clear… go figure.

She took off the the nurses station and I could her telling them what was going on and then basically railroaded her and told her to get back in there and do the job she was supposed to be there for not theirs. So she did.

She explained to to me how to do the test which is really easy in theory. After she sets it, you hold the two ends (fits in your hands it’s not big), take a deep breath in, close your mouth around the mouth piece and one it is sealed you blow the breath out steady and hard until she says stop or until you just cant go any longer. Simple enough?

Anyone with Asthma or COPD or many other lung diseases would likely disagree with that. I am 34. I was diagnosed with it at the age of 5. 29 years of this test and other older tests and they are not as easy as it seems.

When she told me to take a deep breath in I told her if I breath too deep I will start coughing. She said everyone says that and it’s never that bad. Besides you heard the nurse it needs to be done. So 1st try: and immediately I started a coughing fit that lasted for 5 minutes. 2nd try: I spit the breath back out before I could even try to hold it cause I was coughing. 3rd try was a 10 min coughing spree.

She said we would take 5 min and try again. So I layed there concentrating on breathing slowly in and out, in between cough fits. They we tried again. This time we got all three. However on the first one I took the deepest breath I could till I felt the couch tickle, then blew out, it did not come out very well. Second one went about the same I did not make it to her stop and started coughing immediately. The third was so bad because it work except I felt pressure to cough half way thought and held it till she said stop. She left.

That started a coughing fit that lasted 10-15 min followed by me shaking really bad and my breathing became really labored which caused me to hyperventilate again. It got so back that I lost all feeling in my arms and legs.

The nurse grabbed a doctor (not even the one that was seeing me that night) and he said my hands and arms were very blue and so where my feet. They tried to have me move my toes and I could’t move anything, he stuck his fingers in between my curled up hand that I also lost all control over and told me to squeeze. I could not even make a finger twitch. On my own I tried to lift my arm and leg from the bed and they would not budge. And I was tachycardic again.

He said I was actually in real trouble this time, he got another Ativan and put it under my tongue in case it was anxiety and a paper bag to blow into to increase the levels of carbon dioxide in my blood and said that I would pass out soon if they could not get it under control. It worked after a while but I semi passed out twice while they were making me breath in the bag, I started to slide off the bed.

The cause if it all though, the cough, was back after the hyperventilating stopped.

So when the doctor came back in he gave me a prescription for Ativan and told me that the spirometry test came back normal. Which in all the years I have had asthma I have never every had one come back normal. Not even when it was not all that bad at that time. I really don’t know how to take that one.

I really think that there is something missing, something I did not tell them (even though I ended up telling them tons of irrelevant things), or something that I did but that they over looked.

He told me to keep taking the prednisone and the 4 puffs every 4 hours of the ventolin and added the ativan and said to keep taking the antibiotic too as he figures I may well have had pneumonia.

Then he said “There is one more possibility: pertussis (whooping cough) and in adults you often do not have the “whoop” sound when they breath in like in children and adolescense” and that they don’t bother testing for it because they can not treat it.

(Not true… It can be treated by antibiotics because it is a bacterial disease caused by Bordetella pertussis.)

I am also guessing he did not hear the whooping sounds from earlier. But still, the timeline for it might fit. But I would assume that that would be something they can hear. And since my lungs have been clear thorough all of this and my oxygen saturation was in normal range.

It’s just left me feeling more confused. Did/do I have pneumonia? Is it my Asthma, am I having panic attacks and hyperventilating or do I have whooping cough? Oh and the Ativan gives me double vision… how am I supposed to take that at work?