This is turning into a saga. It’s like a really bad telenovela! I meant to just post about the diagnosis but now new developments … It’s like a series of Scooby Doo episodes! Pulling off the mask to reveal the culprit. Give me strength.
So I finally go to the Neurologist. I’m already a mess from all the tests and a week in hospital. I’m hoping for an answer. I hate going through tests and not getting a definitive answer. After all these tests I was going to be really bummed if I didn’t get answers. Also the whole collapsing thing is really freaking me out. The example my rheumatologist gave me of having an attack while in a pool and just drowning really bothered me. So in my mind if we have a diagnosis, we have a way to treat it and all will be good. Right?
I go in and he proceeds to go through all the test results. I definitely don’t have narcolepsy. Thank God. He mentions me having vesovegal incidences in my sleep. Normally this is triggered by the sight of blood or similar things. What I did realise was I had other triggers as well. Vesovegal is also a fainting type condition. On my Mom’s side of the family this is prevalent. Feeling faint or fainting at the sight of blood etc. Weird that this happened while I was sleeping though. This is something that as of yesterday my rheumatologist wanted to look into further. Here is a quick breakdown:
We continue and I’m thinking “Oh Lord just get to it already!”. He finally says that it seems to be cataplexy. He explains you can have cataplexy without narcolepsy. He believes at this point it could be drug induced cataplexy. Meaning that it could be caused my medication. The kicker is I have been on the lowest amount of prescription meds than I’ve been in a long time, so I’m perplexed.
He decides that I would go off some of my nightime meds and he replaces it with new meds. We are going to do this for six weeks to see if there are any changes. So no definitive answer! We have to play with meds and see! Oh my God… this causes me anxiety. It could be caused by meds I used to take or meds I’m on but we have to do this trial run to basically rule out certain things. So onto new meds. The one he wanted me to take at night he smacked me with a massive dose. Oh boy I was SO not prepared for what was to come.
I start this new regimine of meds and my life descends into chaos. I am unable to sleep without waking up every two hours. I have these extreme vivid dreams that freak the hell out of me and make me give up on sleeping. I start suffering from severe heart palpitations. I was given a stronger beta blocker than I had ever used before. These are tablets to slow down your heart rate. My body starts going wtf?? I literally feel like I’m losing my mind!
I develop extreme night sweats. I have awful hot flushes and basically feel clammy, like when you have the flu, all day. My mind was racing. My heart was racing. I was unable to sleep properly at night and I couldn’t nap during the day! I was literally unable to function properly. Hubs had to have take out for dinner because I was trapped in this mess!
After two weeks it starts getting better. I’m adjusting and while the symptoms are there, they aren’t as extreme as they were. I’m now doing alot better than the first two weeks. I had to remind myself that this too shall pass… I’ve had to do the playing with meds before and there is nothing you can do but ride it out. So I am riding it out. Still adjusting but at least the symptoms are manageable… But in this time something peculiar started happening…
I started to develop pains in my joints. It has become progressively worse. The worst part by far are my knees. The pain in my knees steadily progressed to a point that it was completely unbearable. They started swelling. In my mind some anti-inflammatories will help. My normal meds which are really strong don’t even provide relief. So I wake up and start taking pain meds and around 1pm I guess alllll the stuff I’ve taken starts kicking in and the pain isn’t that extreme…. until it wears off and boom! It’s baaaack! Where is Jack Nicholson? This must be The Shining
But… The pain becomes worse. I instinctively know something is not right. As someone with chronic illnesses you get to learn to know your body really well and can discern if it’s my lupus or my fibromyalgia. This feels like neither. I’ve never had this. Hubs sends an e-mail to get an appointment with my rheumatologist. The rheumatologist calls him to say “she neeeeeds to come see me tomorrow”. Okay so he seemed concerned by these symptoms.
I’m at the point where the pain in my knees literally make me want to faint or throw up. Continuing for hours. So I saw my rheumatologist and he examines me. He is super concerned because we have never seen these symptoms before. He ordered tests to be done immediately and wants the results today. He told me that if it’s arthritis he needs to get me onto meds immediately. If it’s a bad lupus flare, it needs to be dealt with immediately. His sense of urgency made me sit up and go whoa! I have to have a power doppler at radiology today. He wants a specific doctor to do it but I can only get an appointment tomorrow! Today it hits me… He was not referring to my osteoarthritis. He thinks I may have developed rheumatoid arthritis!!
Like really. Give me a friggin break!! I cannot have developed another auto immune disease. Feeling totally exasperated and just so over all this bullshit. Sorry for my colourful words but sometimes thats the only way to explain it. So more testing. Never before have I wished that I was just having a bad Lupus flare as I do now! So here we go again… I was diagnosed at 27 with osteoarthritis that really affected my neck and SI joints. Since then I’ve been for so many procedures and hospitalizations. Then along came Lupus and Fibromyalgia and life as I knew it changed completely… So being faced with the prospect of something new is so frustrating!!
The meds he prescribed yesterday has helped a bit with my knees but the pain isn’t gone. When I get to the hospital I am going to have to ask for wheelchair assistance because I cannot walk all the way to where radiology is in the hospital. Ugh. Just friggin ugh …. At the same time I’m also having really bad back and SI joint pain. At least the oxycodone somewhat helps for that. So my dear friends the battle continues. I have been going through it with adjusting meds and feeling sick and being in pain for so many weeks that I’m worn out. And now this …
To be continued… again *facepalm*
ONE LOVE! ✌