Hello ladies,
It has been a long time since I posted, and the only thing that has changed is that I am quickly going downhill (once completely stopping the cortisone all symptoms started again, progressing rapidly lately).
I am going to the German Diagnostic clinic next month. It is based on the mayo clinic in the USA which I have heard good things about, so am looking forward to it. Does anyone here have any experience with the Mayo Clinic? Ther German clinic has me at this stage booked in for 3 days of full and intensive testing, including all the neurological side of things.
The exhaustion is really difficult right now. I struggle to stay awake longer than about 4-5hrs, and am permanently tired no matter how much sleep I have. I sit with my son on the sofa and then wake 2-3 hrs later! I at times nearly fall alseep while driving which is also frightening.
I wanted to also ask you all about headaches. I get almost daily intense headaches and mirgraines and sometiems daily, sometimes a few times in the week this incredible pain in my temple, usually the right side and behind the eye, it is like someone is hammering a nail in there. The pain is horrific and stops me in my tracks.. usually subsides within a few minutes. Does anyone else have pain in the head like this?
My eyes are playing up again too. Before my "first attack" last October, my left eye did this strange thing of not moving left when I tried to look left, it moved in three stages. Recently my sight "vibrated", everything was vibrating for about 2 minutes. Anyone have any experience like this?
The muscle pain is back with a vengeance and I did start going to a gym to get some strength back (my muscles had literally wasted), but I struggle. The pain in my legs and arms (tingling, pins and needles pain) is also starting up again...
Now, this Lupus rash... about 2 yrs ago a purpley-red rash began on my nose.. it is down one side of the nose and accross the end of my nose and is now also accross the bridge of my nose. NOTHING has eased this and some days it is more pronounced than others. Also even though I wear 50spf face suncream if the sun reaches my face, I get this reddy rash on the high point of my cheekbones, under the eyes (does tend to disappear eventually, unlike the one on my nose).. making my look a bit like a raccoon face. Does this sound like a butterfly rash?
The dry eyes has only gotten worse, and I am also noticing more often that I have problems swallowing while eating (not always) or waking in the night with an incredibly dry mouth.
Also, I am noticing that I am having panic attacks, not so often, but they are there.
To date I have lost 3/4 of my hair which truly distresses me.. hoping it will come back....
I'm sorry for this being so long..
Ugh, anyway, just wondering if anyone has similar experiences? I am beyond frustration and just hoping that soon I will be correctly diagnosed and treated...... I have an almost 5yr old son, and this is so unfair on him, I am feeling like I am failing him in so many ways.
thanks for just letting me ramble, and for listening..
Hugs & hoping your days are good ones!
Melissa
It has been a long time since I posted, and the only thing that has changed is that I am quickly going downhill (once completely stopping the cortisone all symptoms started again, progressing rapidly lately).
I am going to the German Diagnostic clinic next month. It is based on the mayo clinic in the USA which I have heard good things about, so am looking forward to it. Does anyone here have any experience with the Mayo Clinic? Ther German clinic has me at this stage booked in for 3 days of full and intensive testing, including all the neurological side of things.
The exhaustion is really difficult right now. I struggle to stay awake longer than about 4-5hrs, and am permanently tired no matter how much sleep I have. I sit with my son on the sofa and then wake 2-3 hrs later! I at times nearly fall alseep while driving which is also frightening.
I wanted to also ask you all about headaches. I get almost daily intense headaches and mirgraines and sometiems daily, sometimes a few times in the week this incredible pain in my temple, usually the right side and behind the eye, it is like someone is hammering a nail in there. The pain is horrific and stops me in my tracks.. usually subsides within a few minutes. Does anyone else have pain in the head like this?
My eyes are playing up again too. Before my "first attack" last October, my left eye did this strange thing of not moving left when I tried to look left, it moved in three stages. Recently my sight "vibrated", everything was vibrating for about 2 minutes. Anyone have any experience like this?
The muscle pain is back with a vengeance and I did start going to a gym to get some strength back (my muscles had literally wasted), but I struggle. The pain in my legs and arms (tingling, pins and needles pain) is also starting up again...
Now, this Lupus rash... about 2 yrs ago a purpley-red rash began on my nose.. it is down one side of the nose and accross the end of my nose and is now also accross the bridge of my nose. NOTHING has eased this and some days it is more pronounced than others. Also even though I wear 50spf face suncream if the sun reaches my face, I get this reddy rash on the high point of my cheekbones, under the eyes (does tend to disappear eventually, unlike the one on my nose).. making my look a bit like a raccoon face. Does this sound like a butterfly rash?
The dry eyes has only gotten worse, and I am also noticing more often that I have problems swallowing while eating (not always) or waking in the night with an incredibly dry mouth.
Also, I am noticing that I am having panic attacks, not so often, but they are there.
To date I have lost 3/4 of my hair which truly distresses me.. hoping it will come back....
I'm sorry for this being so long..
Ugh, anyway, just wondering if anyone has similar experiences? I am beyond frustration and just hoping that soon I will be correctly diagnosed and treated...... I have an almost 5yr old son, and this is so unfair on him, I am feeling like I am failing him in so many ways.
thanks for just letting me ramble, and for listening..
Hugs & hoping your days are good ones!
Melissa
