Discussions By Condition: I cannot get a diagnosis.

I Can't Find Out What Is Wrong With Me

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • August 13, 2007
  • 10:11 PM

I got sick about two years ago. I was at a family get together and my right arm had just gone limp. Every time I moved it a terrible aching pain would take over my entire arm and it only got worse. That night it took me forever to go to sleep and when I woke up the aching had subsided, but I then was horribly fatigued. I must have slept for two days straight. Over the course of the next two years the pains started to travel through my body. It went from my right arm to my left leg, to my other arm and other leg. The best way I can describe the pains is as contractions it will start in the middle joint (i.e. elbow or knee) then travel to my wrists or ankles (where I feel the most pain) and then to my fingers, toes, shoulders, or hips. The pain gets so bad that if it is in my leg I can't walk or if it is in my arm it is immobile.

I have also been experiencing many other unusual symptoms. It seems that I am getting more and more sensitive to light. I get rashes where my skin is uncovered during the day and have also broken out into hives. I have ulcers in my mouth constantly and I become very anxious and irritable when I don't feel good. And I am ALWAYS tired. I had mono before and at some points I feel worse then I did then.

At first I did not want to see the doctors. I am a dancer and I was afraid of what I would be told, but the pain has become unbearable. The first doctor I saw about it had only done general blood work and said everything was fine. Then I went to my mother's doctor (she has crohn's disease) and he immediately sent me to a Rheumatologist. However the Rheumotoligist did some blood work and took some Xrays to check for Crohn's cause it is genetic. Then told me everything looked fine and recommended exercise. I am a dancer, I get enough exercise, but I still feel horrible. It is hard to hear them say you are fine when clearly you feel terrible. Someone please help.

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4 Replies:

  • I can clearly understand your frustration. I have been in and out of pain since 2002 (5 years) and still not able to make sense of whats going on with me. As I sit here and type to you I am running a fever of 99.5 ( i typically run 97.8 to 98.3) and my knees, thigh muscles and ankles are hurting tremendously. I feel like I have been hit by a bus. I was diagnosed with Fibromyalgia in 2002, I guess when they couldn't figure out any other logical explanation. I went into remission in 2004 and only recently came out of it in a BIG way. When I was at work one day I began hyperventilating and shaking and seizing up uncontrollably, I was still alert but couldn't respond to anyone. I was then rushed by ambulance to the Hosp. and was admitted, there for 3 days and the only thing they would diagnose me with was Panic Disorder with Pseudo Seizures ( my EEG was negative). Ever since then I have been in horrible pain and new symptoms are popping up left and right, that don't fit with Fibro. (FYI: when all the seizure activity started I was starting my 3rd week of the ortho evra patch) I and so many others believe that was a big factor in that. Well that started my journey (AGAIN) for digging for more info. I found that more scientists are believing that womens hormones and Lupus are somehow connected in a sense. They strongly advice women with Lupus to not take oral (or patch) contraceptives, due to the increase levels of hormones and this can send you into a flare or cause new symptoms. I found that interesting considering the fact I was on the patch when all that happened. The best thing to do is keep a symptom journal. Write down all the symptoms you currently have or have had that were concerning to you. And anytime you experience new ones write it down...If you have bloodwork done, write down the date and results. This way you have your OWN records. I started doing that back in 2002 and still keep it up today and anytime I go see a Dr I bring my book. And if the doctor doesn't want to listen to you, find one who will. Thats what I'm going through now. We are the ones in pain and we are paying them to help us figure out why! I'm sorry this post is so long and may not be completely helpful ( Maybe I needed a place to vent too :) But I have only touched on a smidge of my symptoms and am more than willing to share the rest and maybe see how common are frustrations are.Take Care and to healthy, pain-free days! Shannon
    Anonymous 42789 Replies
    • August 14, 2007
    • 02:01 AM
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  • look into behcet's disease and see if any of your symptoms sound familiar.
    Anonymous 42789 Replies
    • August 14, 2007
    • 03:19 AM
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  • Thank you Shannon so much for that post. I too have been keeping a journal of all my symptons and when I showed it to the last Rheumatologist I visited she looked at me like I was crazy, told me once again that my bloodwork was fine and sent me home with a prescription for exercise (yeah, that is exactly what I wanted to hear). You see I am a professional dancer (lyrical dancer, but my backround is in ballet) and when I first started having pain I dismissed it. I figured I was working myself too hard. I know my profession is ******n my body, but at one point it got way too bad. Some of the doctors kept on asking me if it was muscle pain, but I know my body and my pains are deep in my joints. I am young and shouldn't feel this way, but I do have these pains. I have started to have odd twitches in my knees (when I am trying to sleep my legs will do their own things). I too get terrible fevers, especially at night. Even right now. The doctors immediately test me for Crohn's because of my mother, but I do not have the same symptoms as her and I looked up Lupus, but apparently they feel you can't have it if none of your family has.I feel your pain and hopefully we can talk more about it. Thank you so much. It helps to know that I am not crazy and others are feeling the way I do.Courtney
    Anonymous 42789 Replies
    • August 15, 2007
    • 04:07 AM
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  • :) Believe me, you are, by no means, crazy. If you are then I am too and we need to locked up immediately..lol Yeah my mom has MS, but I don't believe that is what's going on with me. But in the same breathe, MS, like Lupus and RA and a few others, are Autoimmune diseases. So there is that link. I feel like I am at my wits end, and am running out of doctors here in town and am truly considering searching for a doctor in another city. Im not expecting to walk out of the doctor's with a definite diagnosis immediately( but it would be nice) I just want a doctor who takes me and my pain seriously and is willing to help me find out what IS wrong. I am a nurse and do have a good bit of medical knowledge, And I usually know when something is not right, especially with myself. But I also do know that there are unfortunately a lot of arrogant Doctors, who are quick to throw a prescription at you, then actually try and find out what is going on. I just hope for our sakes that we find those wonderful doctors who are going to help us :) Take Care ! Shannon
    Anonymous 42789 Replies
    • August 21, 2007
    • 03:36 AM
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