Discussions By Condition: I cannot get a diagnosis.

21 and in CRIPPLING PAIN....please HELP!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: alphaomegaproduction
  • May 27, 2009
  • 04:30 AM

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!

Reply Flag this Discussion

7 Replies:

  • Can you look into your medical history to see if you got any vaccines around the time of your first symptoms. Off the top of my head, the only spontaneous occurrence congruent with your symptoms is an auto-immune reaction to vaccines that have been known to cause neurological damage. I would recommend going to more specialists for evaluation, but until you get more specific information only submit to non-invasive diagnosis procedures.
    Anonymous 42789 Replies Flag this Response
  • HiIt sounds terrible particularily for someone as young as you.I am sure your doctors have thought of this but who knows.There are many different types of muscular dystrophy. Your age group is right for faclal scapular but your symptoms sound more like distal muscular dystrophy. Your wide legged gait suggests limb girdle muscular dystrophy.I am not a doctor and really Dr Cottle seems to me to be the most knowledgable person on this forum.He is a retired neurologist and possibly it is a neurological problem that you have not a muscular one especially due to the pain.I really send wishes for your good health
    chrismia 159 Replies Flag this Response
  • I will apologize in advance because I do not have any answers for you, but I wanted to post, just to say keep your head up. I have some very similar symptoms to you. I, too, cannot get any diagnosis. What really got my attention was when you said, "it feels like my muscles are being pulled off of my bones." I have been having some severe "cramps" or "growing pains" in all of my muscles all over my body for the last 8 months, and I described my pains in the EXACT same way. It literally feels like the muscles is trying to rip itself from the bone. This is my posting: http://forums.wrongdiagnosis.com/showthread.php?t=37981Don't give up hope, and don't let the doctors say you are fine. I haven't done either, and while I don't have any answers to my problems, I won't stop looking until I am not in pain anymore, or the doctors find what is wrong. It took a couple years and lots of prodding (and a couple hospital visits) to find out my current conditions, so again, don't give up hope. I will keep an eye on this thread and hope you find some answers and start to feel better.
    mmubiks 14 Replies Flag this Response
  • First, I hope you can find some relief in one way or another.Second, I am replying because I have felt similar symptoms, and cannot get any answers either. What really caught my attention was when you said, "it feels like my muscles are being pulled off of my bones." As this was exactly how I described my pains to my doctors. I have had these pains since October every day, and occassionally before that. I have tried to explain them to people as very severe cramps, charley horses, growing pains. Is this similar to what you have experienced? I have been shuttled from doctor to doctor as well, and so I can empathize with your frustration. Don't give up!!
    mmubiks 14 Replies Flag this Response
  • I am so sorry to hear of your pain.. I too have had the same symptoms for 4 years. I lost my ability to walk for at least a year. I still do not go out of the house as my walking is very unsteady. I was also on prednisone for 2 1/2 years at which time I had a Dr tell me that if I did not get off of it - it would kill me. I had gained 80 pounds in those 2 years because of it. I do however have some good news.. The pain is not nearly as severe as it was and at this time I am hoping that some treatment I am now on will help. This may sound odd to you since you are so very young. But have your hormones tested and your adrenals tested.Hormones are now so prevalent in our food and air that it is disrupting the natural hormones in your body. I have started on bio identical hormones 2 weeks ago yesterday. I can tell you this last october I started on a vitamin therapy from women to women and by Dec. 25 I was able to walk for the first time in 6 months. You need high quality pharmaceutical grade vitamins. You are more than welcome to email me at diane@masterscoopers.com.. I know how lonely this will become if it has not already. Because the Dr's can not diagnose at some point people, family, friends start to think that you are crazy. The Dr's will try and put you on anti-depressants. Stay positive. I know that is hard when you are so drained from pain.I will keep you in my prayers. Please- if you need to talk please feel free to email me. Diane
    Anonymous 42789 Replies Flag this Response
  • Can you look into your medical history to see if you got any vaccines around the time of your first symptoms. Off the top of my head, the only spontaneous occurrence congruent with your symptoms is an auto-immune reaction to vaccines that have been known to cause neurological damage. I would recommend going to more specialists for evaluation, but until you get more specific information only submit to non-invasive diagnosis procedures. Thanks for the suggestion......I have not had any vaccines for over a year unfotunately, so I don't think that would affect my current problems.....I did however, have a very severe bout with bronchitis around the same time all of this started and I was much sicker than I have ever been with it in the past.....runnin a 101F fever 5 days into a 7 day course of Levaquin while taking Advil.....
    alphaomegaproduction 3 Replies Flag this Response
  • HiIt sounds terrible particularily for someone as young as you.I am sure your doctors have thought of this but who knows.There are many different types of muscular dystrophy. Your age group is right for faclal scapular but your symptoms sound more like distal muscular dystrophy. Your wide legged gait suggests limb girdle muscular dystrophy.I am not a doctor and really Dr Cottle seems to me to be the most knowledgable person on this forum.He is a retired neurologist and possibly it is a neurological problem that you have not a muscular one especially due to the pain.I really send wishes for your good health Thanks Chrismia, my current neruo is actually the first doc to think that it is not a nerve problem (they have been thinking something like CIDP or GBS) and that it might be muscle disease. I will definately do some research on limb girdle and distal muscular distrophies.......I have read up on polymyositis and dermatomyositis and the symptoms definately fit what I do have going on. I have an EMG scheduled for next week and I'm hoping that they find something!
    alphaomegaproduction 3 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.