Discussions By Condition: I cannot get a diagnosis.

Severe Joint Problems at 20, Please Help!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Shortney88
  • April 10, 2008
  • 06:36 PM

I am too young to be experiencing this amount of pain and can't get a diagnosis.:(

Okay, so this is the second time I have written on the blog and I have had little help from doctors since then. To give you a little overview, I am a twenty-year-old professional dancer who has been having severe joint problems along with many other related symptoms for going on four years now. My symptoms are as follows and most of them occur at the same time, if not in the same day as each other:

1. Arthritic Joint Pains and Problems
When I have a "flare up" a joint, usually starting with an elbow and a knee, will begin to ache and then will travel throughout the entire limb until eventually I can't move my limb without causing myself sever pain. The best way I can describe it is that it comes in waves--starting out not so bad and growing into an indescribable amount of pain.
Along with pain I have noticed that my knuckles of my fingers have begun to turn. My middle finger on my right hand has gotten to the point where I can barely bend it.
2. Chronic Fatigue
I am always tired and most of the time, when I feel like I have a lot of energy, out of no where I lose all energy and become very tired.
3. Skin Problems
Starting about two years ago, I began to notice that every time my skin is exposed to the Sun or really bright lights, especially my face, legs, and back, it breaks out in a rash and just recently I have notice that there is a rash (that itches horribly) on my back that will not disappear. There has also been one occasion where my leg has broken out into hives after a day spent teching for a show that I was dancing in.
4. Muscle Issues
Just recently I have begun to have major muscle problems that appear every time I have a "flare up." For example, when laying down to go to sleep, when my joints are aching, I have uncontrollable leg twitches. They are not many or very frequent, but disturbing. Also I have been having terrible charlie horses in the past year. Actually this past month I have had four and I do take vitamins and eat bananas. I can't explain them. I am a dancer so I do know the difference in muscle spasms and pains and I have had charlie horses after a hard day of work outs, but this is unbelievable.
5. Other Symptoms
I have other small symptoms, such as loss of hair, fingers turning purple when cold, skin changing to a reddish color when joints are hurting or swollen. Also my lips have been swelling and turning red a lot whenever I have a flare up and usually all day before (my flareups tend to happen at night or later afternoon)

I have started a journal and everytime I have an issue I write it down, but here is the problem. My mother has Crohn's Disease and has had joint problems for years, however her joint issues were just secondary to her bowel problems. Whenever a doctor asks me the usual questions about Inflammatory Diseases in the family I tell them Crohns and they immediately test me for it. I have grown up with my mom being sick and I know I don't have the bowel problems she has and the doctors never find it in tests so they tell me to go home and exercise. I AM A DANCER. How much exercise do they want me to have.

They also, after hearing my symptoms ask me about Lupus (if I know of anyone in my family who has it) and as soon as I say no they leave it at that and do not test me for anything else. I have been to three rheumatologist and am at the end of my rope. I am in constant pain and have no way of treating it. I have several other medical problems that have all been diagnosed and treated and the one I want them to diagnose they can't or won't. Please help me. If you have a similar problem or experience or if you have any more suggestions on how I should go about finding out what is wrong, please let me know.

Thank you,
Someone in need of encouragement and help

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6 Replies:

  • Please don't give up trying to get answers. Your family history of Crohn's puts you at risk for other autoimmune diseases... and it can always be something else, too.Can you go to another rheumatologist? Perhaps one at a medical teaching facility?It's really good that you are keeping a log of your symptoms. I think if you summarize it succinctly, it may help the next doctor hone in on an answer.Another really helpful thing would be to keep a list of all past labs you have already had done, with the normal ranges included. This will help avoid repeat testing and perhaps get the next doctor to consider rarer things sooner.It took me 8 neurologist to get my illness diagnosed (i have a rare complication of autoimmune thyroiditis called hashimoto's encephalopathy). So, just because 3 of the same kind of specialist have not figured it out yet does not mean you'll go forever without an answer. Sometimes it might take 8.Hopefully you will get an answer sooner rather than later.Hang in there!
    Anonymous 42789 Replies Flag this Response
  • This does sound as if it could be lupus. Just because nobody else in your family has it, it doesn't mean that you can't have it. Some simple blood tests would indicate whether it could be lupus. Ask your Dr to do this.
    ruth40 55 Replies Flag this Response
  • Listen to Blaze. I have some patients with Lyme and your statements sound like there is a good possibility you have it too. Find a doc that is Lyme Literate and do not use a regular doc who does not know how to test you correctly.
    Anonymous 42789 Replies Flag this Response
  • So sorry to hear of your issues, I too am a dancer and I am experiencing about the same symptoms for almost a year. This all started after I had a food borne illness (staphylococcus aureus). Have often wondered if this has anything to do with my problem. The Doctors don't seem to ever consider it, but my joint problems all started after that. I am seeing a rheumatologist and do not have a diagnosis. Have had blood testing/imaging that does not indicate inflammation, have had cortisol and thyroid testing. I am currently taking medication for rheumatoid arthritis but have no physical signs of the disease and the medication is not helping at all. Have you ever had a food borne illness before all this started happening for you? Have you received a diagnosis yet? All the best,Viper21
    Viper21 5 Replies Flag this Response
  • So sorry to hear of your issues, I too am a dancer and I am experiencing about the same symptoms for almost a year. This all started after I had a food borne illness (staphylococcus aureus). Have often wondered if this has anything to do with my problem. The Doctors don't seem to ever consider it, but my joint problems all started after that. I am seeing a rheumatologist and do not have a diagnosis. Have had blood testing/imaging that does not indicate inflammation, have had cortisol and thyroid testing. I am currently taking medication for rheumatoid arthritis but have no physical signs of the disease and the medication is not helping at all. Have you ever had a food borne illness before all this started happening for you? Have you received a diagnosis yet? All the best,Viper21
    Viper21 5 Replies Flag this Response
  • I have not recieved a diagnosis yet, no. I am currently in Europe and have not been back to the doctor in about a month. Also, they have not given me any medications, not even antiinflammatory. I also have not been diagnosed with a food borne illness ever in my life. I have also had imaging and tests done. My blood tests came back fine, however when x-rays were taken to test for Crohn's they found nothing, except for the fact that I had fractured my spine. This is when my rheumatologist referred me to another specialist and never set up another appointment. When I went back with my mother (who had the same rheumatologist) and asked when she needed to see me again she told me to exercise and it should take care of it. But I have been having the same symptoms for a while now, during which time I was exercising every day. I am in the process of trying to get another referral from my GD but have yet to have any success and my career is paying for my illness. Let me know if you have any luck in your endeavor as well, or if you have any more suggestions.
    Shortney88 1 Replies Flag this Response
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