Discussions By Condition: I cannot get a diagnosis.

ongoing body aches, joint pain, and fatigue...PLEASE HELP!!

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • January 11, 2011
  • 07:22 AM

Well this all started a little over 2 months ago when I started to notice pain on the bottoms of my feet while I was driving. I ignored it at first but then it started spreading to my legs and arms and now it is everywhere including my sides, ribcage, back and neck. I had a few unexplained bruises on my legs. I also started feeling really weak and fatigued all of the time. I just turned 19 about a month into this so I am a freshman in college. Before all of this I was a high energy person and I exercised all the time. I was even planning on getting back into tumbling so I could try out for cheerleading in the spring because I've missed it so much! Needless to say, that has all gone down the tubes. With all of this I could barely even get through my classes every day!

I went to the doctor, but she didn't seem very concerned. She didn't even look at the bruises or anything. She did do a cbc and that came out normal (this was about a month and a half ago). She said if I still felt bad in 2 weeks to come back. In the meantime it was thanksgiving, and my cousin suggested that maybe I had mono. Well after a few more days of pain and fatigue I decided to go to the urgent care place to get tested for mono. The monospot test came back negative, but the doctor told me that he was 99% sure that is what it was so he gave me some steroids. These helped me a little bit for few weeks, though I was still weak and very low energy. I decided it must be mono and I would be better soon enough.

Then a couple of days after Christmas everything came back full force, so on new years eve I went back to urgent care since it is quicker to get into than the regular doctors. This time there was a different doctor there who basically told me I was an idiot for thinking I have mono since the test came back negative and because of something in my cbc. So last week I went back to the first doctor who was much more concerned this time around. She said that she told me to wait a couple of weeks the last time because she was so sure that this was just a weird virus and would be gone by then.

She took 5 more tubes of blood, and ran a lot more tests and all the others from my previous visit a second time. She also ordered a glucose tolerance test and a bone scan...everything came back normal, and the mono test was in fact negative. It ruled out lupus, diabetes, artheritis, anemia, and many other things that I can't remember as well. So now I have no clue now what is going on! I was so sure that it was mono since my symptoms matched my cousin's exactly, but that is for sure ruled out. I am being tested for Lyme Disease tomorrow morning.

Does this sound like anyone else? Or does anyone have any ideas on what this could be?? I'm sorry for such a long post, but I wanted to be thorough! Thanks to anyone who reads this!!!

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3 Replies:

  • This happened to me 10 years ago (I was 40 then). I started to feel soreness in my heels, especially when I got out of bed in the morning. Then it got worse and I had constant pain and a burning sensation in the soles of my feet. Sometimes I had a feeling of numbness. After a while I got even worse. I could not walk at all and developed the same condition in my hands (palms). A month later my twin sister developed similar symptoms, but not as severe. Two weeks later her husband (a doctor himself) had a very mild variation on the same theme, but his symptoms only lasted for two weeks. I couldn’t walk for 6 months. I had a mild swelling around the heels (the wrinkles that normally are there were gone) and the afflicted areas were a bit more reddish than normal. I went to six different doctors, all thought I was crazy (one actually asked me if I had been raped and did not want to believe me when I said I hadn’t). They had run all kinds of tests which all came back negative. A colleague of mine is a radiologist, and she run MRI on my feet and we could clearly see on T2-weighted pictures that there was a thin inflamed layer under the skin. Finally when I started to recover I met a good rheumatologist who explained things to me. I remember he called the reaction in my feet panniculitis. I talked to three people who had experienced something similar and nobody could ever figure out what was wrong. My theory is that a stomach flue started it. Our whole family had been skiing in France and we had had a horrible stomach infection. We had the infection about two months before our feet symptoms and I also developed a severe vertigo before my feet symptoms (the vertigo lasted for about a month and slowly disappeared). I also developed pain in my joints, worst was my lower back and my right knee. What had made things worse, I’m sure, was that three weeks before our ski trip I had gone through mononucleosis, which is a rather serious infection. It took three years before I recovered completely. Today my feet soles are wrinkled as usual. All pains have subsided and I am no longer dizzy. At the time I searched Medline for weeks on sore feet without finding anything published. I found though interesting articles on the topic of reactive arthritis. My rheumatologist’s theory is that these two infections upset my immune system and made it overreact. This is how most of the autoimmune conditions start. There is often an infection starting it. Often a stomach infection like Yershinia, Salmonella, Shigella. The prognosis is good, but it may take some time. Maybe my story can help?
    Felsen 510 Replies
    • January 11, 2011
    • 09:47 PM
    • 0
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  • I can't get up in the morning. Pain is so bad. Back, legs are going paralyzed and too painful. Also my feet are like nails going through them. I'm getting so weak. All I do is sleep. I am so depresed and my nerves are getting so bad with all the pain. Nobody will help me because I'm on medicaid. I don't know how much longer I can do this.
    Anonymous 42789 Replies
    • January 12, 2011
    • 01:03 AM
    • 0
    Flag this Response
  • Well this all started a little over 2 months ago when I started to notice pain on the bottoms of my feet while I was driving. I ignored it at first but then it started spreading to my legs and arms and now it is everywhere including my sides, ribcage, back and neck. I had a few unexplained bruises on my legs. I also started feeling really weak and fatigued all of the time. I just turned 19 about a month into this so I am a freshman in college. Before all of this I was a high energy person and I exercised all the time. I was even planning on getting back into tumbling so I could try out for cheerleading in the spring because I've missed it so much! Needless to say, that has all gone down the tubes. With all of this I could barely even get through my classes every day! I went to the doctor, but she didn't seem very concerned. She didn't even look at the bruises or anything. She did do a cbc and that came out normal (this was about a month and a half ago). She said if I still felt bad in 2 weeks to come back. In the meantime it was thanksgiving, and my cousin suggested that maybe I had mono. Well after a few more days of pain and fatigue I decided to go to the urgent care place to get tested for mono. The monospot test came back negative, but the doctor told me that he was 99% sure that is what it was so he gave me some steroids. These helped me a little bit for few weeks, though I was still weak and very low energy. I decided it must be mono and I would be better soon enough. Then a couple of days after Christmas everything came back full force, so on new years eve I went back to urgent care since it is quicker to get into than the regular doctors. This time there was a different doctor there who basically told me I was an idiot for thinking I have mono since the test came back negative and because of something in my cbc. So last week I went back to the first doctor who was much more concerned this time around. She said that she told me to wait a couple of weeks the last time because she was so sure that this was just a weird virus and would be gone by then.She took 5 more tubes of blood, and ran a lot more tests and all the others from my previous visit a second time. She also ordered a glucose tolerance test and a bone scan...everything came back normal, and the mono test was in fact negative. It ruled out lupus, diabetes, artheritis, anemia, and many other things that I can't remember as well. So now I have no clue now what is going on! I was so sure that it was mono since my symptoms matched my cousin's exactly, but that is for sure ruled out. I am being tested for Lyme Disease tomorrow morning.Does this sound like anyone else? Or does anyone have any ideas on what this could be?? I'm sorry for such a long post, but I wanted to be thorough! Thanks to anyone who reads this!!!Well , I am soo happy to hear that someone is actually testing you for Lyme's!!!! It's such a simple blood test, but the MD's NEVER do it. Now there are ALOT of false negatives, but if I were you, I would ask to be put on the antibiotics anyway. If it is Lyme's ...you will feel much better quickly . I thought of another syndrome or disease , but considering your age ...I don't know. I have Fibromyalgia which sounds alot like all the symptoms you are describing...ask about that also. The biggest lesson you are learning here is to be your own advocate!!! Research and ask lots of questions to the Doc, friends, family us... and get 2nd opinions etc.... Doctors are not GOD....they make mistakes and don't spend alot of time with us to truly get the whole picture. Yor too young to feel like this and demand that you get treated !!!!!! Good luck and I know you will feel better real soon and Make the Cheerleading Squad!!! Regards, Your Friend
    Anonymous 42789 Replies
    • January 15, 2011
    • 04:49 AM
    • 0
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