I was having my best day pain wise since this group of symptoms started mid December. Then about an hour ago it was like a flip switched. My headache worsened. I got aches all over. My stomach is severely upset. I cannot believe how fast I can go from feeling great (relatively speaking) to really gross.
OMG I'm sorry you're in pain, but I'm also so grateful to you for writing that right now. I know exactly what you mean, so in that sense I share you're pain... I was actually just wondering how to write my own situation but had no idea how to talk about it, but your post makes me think you might understand.
I have Lyme disease, though in Australia it's not officially recognised by the medical community- (they know it's real, they know it's in Australia but can literally lose their jobs if they diagnose and treat it) I know I have it because over the last two years I've been experiencing so many different symptoms it's crazy, and they range from weird and annoying (like weird palm sized patches of skin on my back suddenly tingling intensely) To straight out painful and scary (like when half of my face droops slightly or becomes numb for hours, or when my knees swell and burn, or when Im showering and out of nowhere I lose all strength in my arms and literally can't raise them long enough wash my hair ect.) not to mention a few years ago I got really sick after being bitten by a tick in Queensland, had the rash ect but thought it was a crazy flu and a bad reaction to all the bugs that were biting me and the heat so didn't seek medical treatment (argh) (Sorry this is taking much longer to write then I thought it would) My point is all of my symptoms come and go randomly, and vary in intensity and duration, might be 5 mins might be 5 weeks....
I haven't told anyone about what I'm going through, only doctors, nurses and my boyfriend.
What really sucks is that I don't have any real support.... My bf was trying, and for awhile he was really great, he even learnt about different antibiotics used in treatment and bought heaps of vitamins ect His support has meant the world to me, I know he wants me to be happy and healthy.. Which is why I don't understand why he refuses to take ten minutes to learn about what Lyme disease actually does to your body, or the symptoms that go with it.
Because he doesn't understand. In fact because he can't see any wounds or anything he associates with causing pain he has decided I must be faking it and that I'm lying when I say I feel unwell.
He e he thinks of that he thinks my body was convulsing and twitching while I tried to sleep the other day is mean I'm on heroine...I'm NOT, obviously)
The fact that he thinks I would do that has shocked, angered and totally crushed me :(
Feeling pretty alone right now
I'm sorry this was probably the wrong place to post all that, tried to cut n paste to spare you from having to read it but I'm using my phone and it didn't work- argh.
And a big thank you to anyone who had the energy to read it all really needed to get it out
Erynn, I am so sorry you are going through that! At first my husband lost patience and thought I was exaggerating. He was never mean about it. He just didn't understand how I could feel so gross so often. I have noticed now that I have tests scheduled (CT, MRI, Nerve Conduction) he is much more understanding.
That's crazy that they can't diagnosis Lyme! I hope you get a proper treatment soon!