I'm 21 and am unable to work, go to school or do simple, everyday tasks because the pain and weakness I'm in are so debilitating. Someone out there please tell me that I'm not alone.....I've been going to doctors for the last two months and I'm no closer to a diagnosis than I was before I started! Any suggestions or even someone who has experienced something like this please respond!
It started in February with me thinking that I needed new work shoes. I wait tables full time and go to school full time. I purchased new shoes but there was no change. My legs from the thighs to my feet felt very achy, sore and somewhat painful. Then a month later on vacation I started falling down when I was walking over even a mildly uneven surface like a tile floor. It felt like someone was squeezing the backs of my calves as hard as they could. I was really tired too.....I am a person who requires only a few hours of sleep and I would sleep up to 18 hours a day if I could. By the time I returned home my shoulders were aching too and my hands were difficult to use when my shoulders hurt....typing was difficult like I couldn't get them to move properly, like they were stiff. The leg pain had intensified and I was having trouble getting up staircases. It was like my legs were too heavy to pick up and I had to pull myself up with the railing. I didn't want to put on my makeup or straighten my hair because my arms would start to ache quickly. The pain at this point was constant and was made worse by whatever I did. No rest would improve it and I was exhausted all the time. I kept getting numbness and tingling in my feet, calves, hands, fingers and forearms that came and went. My legs now felt like someone was taking a knife and stabbing it into them. I used a lot of heating pads and heat wraps but I can't feel them getting too hot and then I get burns on my legs from leaving them on too long. I waddle when I walk and my feet shuffle.....they can't pick up and and I walk with a fairly wide gait now. When I lay down or sit, I start to twitch. Sometimes it's just a finger or my toes that flex or jump and sometimes it's my whole leg. My joints from my hips down and my shoulders down in my legs and arms ache. Sometimes it feels like my muscles are being pulled off of my bones.....like shin splits but all down my arms and legs. My eyes ache and reading is difficult.....like the same feeling you get when you are running a fever. My doctors have run a full blood workup including an ana for lupus because I have this wierd rash on my thighs that looks like x's crisscrossed and is purple red. My EMG a month ago was normal and I have another one scheduled for in 2 weeks. I was put on Lyrica a month ago and it has helped a little, and Prednisone 40mg daily 2 weeks ago and it has made a huge difference up until about 3 days ago. The prednisone took away the stabbing and aching pain for the most part and the twitching subsided and I was walking better but still not normally. When we tried to decrease it to 30mg the pain was back within 2 days, so we went back up to 40. But three days ago the aching stabbing pain was back in my legs and arms and it feels like every single one of my joints, especially my ankles and knees have all been sprained......and walking feels like my ankles are 'sliding' around. And the twitching is coming back.....and yesterday my entire leg was just shaking continuously for a good 20 minutes. My mother also tells me that my calves look uneven, as in one looks thinner than the other. I was really encouraged by the prednisone for the last two weeks and I can't go back to the pain that I had before and am having again! My weakness requires me to pull myself up out of a chair and I would never sit down on a floor because I would be unable to pull myself up and often i sit down and 'scoot' up and down staircases......although in general I just try to avoid them. Please if anyone has any suggestions or has experienced this respond.....I just want my life back! One note of two things that may or may not be involved are that I uninate very frequently now, am very thirsty and feel very hot all the time. I am normally a very cold person, uniate once a day and never drink any fluids. But it is summer, so may or may not be involved. Also, I feel like even though I have dry skin it is much drier than it has ever been.....I can't stop shedding flakes off of my legs in particular, however my mother does not think it is involved. In addition to the bloodtests they've run (a thorough basic workup I'd say) I've had a brain and full spinal MRI and a c spine CT. Please respond if you can help thank you so much!