Discussions By Condition: I cannot get a diagnosis.

17 yrs old: chronic, worsening joint pain and can't get a diagnosis!! HELP!

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: kayrie95
  • March 7, 2008
  • 05:57 AM

I am a 17 year-old with major joint pains. So far, the pain has been basically constant for about 4 or 5 years. It started in my wrists, hands, ankles, and neck, but has since then spread to all of my joints. It has been getting steadily worse, to the point where now I have trouble doing some things (like playing a musical instrument) without my joints locking, and it recently got to the point once where I could barely move without crying from the pain. My doctors have spent several years trying to write it off as tendinitis. I've been tested for several things (I've had a SED rate test and have been tested for lupus for the third time about a week ago and who knows how many blood test for who knows what) and everything has come back normal. I've been to a rheumatologist, but she didn't give me a diagnosis. Here are a few of my usual symptoms:

Joint pains/joints locking
Muscle pain
Muscle tension (only in the neck)
Fatigue
Frequent headaches
(not common but very painful) shoots of pain from my back to an appendage (usually my arms)
Joints popping (which is painful but they normally work better afterward)

I know these are probably very common symptoms, but I can already rule several things out. I don't have rheumatoid arthritis, lupus, or any inflammatory disorder. Inflammation has never shown up on any of my blood tests. I'm not anemic (for some reason they tested me for that a lot of times). I haven't injured my joints in any way that I'm aware of. I don't have fibromyalgia because my joints aren't sensitive to the touch usually (unless I'm getting the shooting pains) I think my doctor ruled out Addison's disease, but I'm not sure about that one.
I've tried many many many different medications in hopes that maybe one will help. None of the over the counter ones worked, none of the NSAIDs worked (understandable since there was no inflammation) and Tylenol with Codeine didn't work. In fact, the only thing that helped even a little was the corticosteroid, and that made my back hurt (adrenal glands, maybe? They would be in the right place). I'm confused and my doctor is stumped. I'm not asking for a diagnosis, but some new ideas would be much appreciated.

Thanks a lot,
K

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11 Replies:

  • look into stills disease, if you have fevers ( when you are not on meds that stop the fevers)http://www.stillsdisease.org/stills_info look into metabolic diseases like thesehttp://www.emedicine.com/ped/genetics.shtml I am a 17 year-old with major joint pains. So far, the pain has been basically constant for about 4 or 5 years. It started in my wrists, hands, ankles, and neck, but has since then spread to all of my joints. It has been getting steadily worse, to the point where now I have trouble doing some things (like playing a musical instrument) without my joints locking, and it recently got to the point once where I could barely move without crying from the pain. My doctors have spent several years trying to write it off as tendinitis. I've been tested for several things (I've had a SED rate test and have been tested for lupus for the third time about a week ago and who knows how many blood test for who knows what) and everything has come back normal. I've been to a rheumatologist, but she didn't give me a diagnosis. Here are a few of my usual symptoms: Joint pains/joints lockingMuscle painMuscle tension (only in the neck)FatigueFrequent headaches(not common but very painful) shoots of pain from my back to an appendage (usually my arms)Joints popping (which is painful but they normally work better afterward) I know these are probably very common symptoms, but I can already rule several things out. I don't have rheumatoid arthritis, lupus, or any inflammatory disorder. Inflammation has never shown up on any of my blood tests. I'm not anemic (for some reason they tested me for that a lot of times). I haven't injured my joints in any way that I'm aware of. I don't have fibromyalgia because my joints aren't sensitive to the touch usually (unless I'm getting the shooting pains) I think my doctor ruled out Addison's disease, but I'm not sure about that one. I've tried many many many different medications in hopes that maybe one will help. None of the over the counter ones worked, none of the NSAIDs worked (understandable since there was no inflammation) and Tylenol with Codeine didn't work. In fact, the only thing that helped even a little was the corticosteroid, and that made my back hurt (adrenal glands, maybe? They would be in the right place). I'm confused and my doctor is stumped. I'm not asking for a diagnosis, but some new ideas would be much appreciated. Thanks a lot,K
    TaylorDeelwithit 382 Replies Flag this Response
  • Thanks! I'll look into it! Stills is a no, though. I usually run low, actually.K
    kayrie95 5 Replies Flag this Response
  • Joints that "pop" and crack are a major sign of hypermobility. This means joints that move too far out of position (can you bend your fingers back very far, touch your palms to the ground, do your knees bow backwards slightly when you lock your knees?) I have this condition and it causes severe, chronic pain unfortunately. Major headaches, too. It can be a symptom by itself, or it can be part of a syndrome called Ehlers Danlos Syndrome *hypermobile type*. Check it out on the internet, and go see a geneticist. I had this for 10 years before I finally got a diagnosis. Good luck, kiddo.
    Anonymous 42789 Replies Flag this Response
  • Thanks! I doubt Lyme, though. I lack the inflammation present with the joint stuff and I almost never run a fever. My average temp is about 98, maybe 99 if I'm about to get sick. However, the EHS is something to look into.Thanks again,K
    kayrie95 5 Replies Flag this Response
  • have you had more than a SED rate to check for autoimmune disease's? if you look at the research not all people with lupus or say bechets disease show a positive sed or ANA i am would look into the ANA test. My daughter had a positive ANA at 1 year old yet had neg sed rate. she has bechets as well as my mother. my daughter is almost 5 now and goes through many of the same things you do. lately she has had pain in her hips and legs and headaches. she is 4 and does not understand. some times she just falls this is how we found out something was wrong when she was a baby she learned to walk then started not wanting to. then she would fall and cry took her to childrens and found that she has this disease that is believed to be possibly genetic whci to me seems right my mom has it and my daugfhter and my niece my sister and my self have all shown symptoms. but don't get discouraged my mom's diagnosis took many many years. keep looking into thing whith the rhuemitoligist find the right one....good luck.
    Anonymous 42789 Replies Flag this Response
  • I know you didn't mention any gut symptoms, but I think it's still possible to have celiac disease without them... although it's probably a long shot. I just used the multiple symptom checker here for "joint pain" and "head symptoms" and "weakness" (I couldn't find the combination that allowed for headache, fatigue, and joint pain, so i improvised). it came up with over 90 possibilities, one of which was celiac. You might want to do it yourself and see if anything fits.Good Luck!Also, you might want to start keeping a journal of your symptoms since it might help someone diagnose you one day.
    Anonymous 42789 Replies Flag this Response
  • Thanks to all who have replied! All of your suggestions make sense, and I'll ask my doctor about some of them when I go back (which will be the week after this coming one). mg1011, hypermobility is definitely a possibility. I can do all of the things you asked about with relative ease (as long as my joints don't spaz out and lock when I do them :( ). Once again, thanks to everyone, and more suggestions are very much welcome.K
    kayrie95 5 Replies Flag this Response
  • Hello! I have an update! My (new) doctor diagnosed me with Fibromyalgia. A rather big surprise, since I didn't think I had many of the trigger points. But we'll see what happens. His diagnosis makes more sense than the other's and the medicine has helped some (I was only diagnosed with it a couple of weeks ago and this is a trial medication. Others might work better), so I'll go with it. Thanks to all who gave suggestions!!!
    kayrie95 5 Replies Flag this Response
  • Have you looked into Lyme disease?
    N12596 1 Replies
    • August 23, 2013
    • 02:36 AM
    • 0
    Flag this Response
  • Just an FYI for anyone else who stumbles on this thread looking for answers. It is not at all uncommon for people with Ehlers-Danlos Syndrome to first be misdiagnosed with Fibromyalgia. It's also not uncommon for the two conditions to co-exist. Furthermore, it's hard to find doctors who know about Ehlers-Danlos Syndrome, let alone are familiar enough to diagnose it. Typically it is diagnosed by a geneticist, which is important to know as most people don't call a geneticist when they have a mystery joint condition. I hope you are doing better.
    mrsmrsmrs 2 Replies
    • September 10, 2013
    • 10:37 PM
    • 0
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  • hi Im 17 and just read you're post, I also have major joint pains in almost all of my joints, and have been to many doctors but haven't gotten any answers, like you I don't have any inflammation in my joints, I have had blood tests which came back negative and I have no clue what is going on!! my joints hurt the most when I do sport or exercise and hours later, I cant sit or lay down because the pain in my back is unbearable! im glad you might have found an answer and hope you are feeling better soon.
    Anonymous 1 Replies
    • October 28, 2015
    • 01:47 AM
    • 0
    Flag this Response
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