Discussions By Condition: I cannot get a diagnosis.

Severe knee and joint pain with no diagnosis at 22 years old, please help!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: lrw53566
  • August 29, 2010
  • 08:20 PM

I am a 22 year old female who, until recently, was extremely active and healthy. I was working out about six times a week and rotating between yoga, Pilates, cardio, and weight training.

Around January of 2010 I started experiencing horrible pain in my right knee. After taking some time off from the gym and still experiencing chronic pain, I made an appointment with an orthopedic knee specialist. I had x-rays done and was told that my knee looked beautiful (structure-wise I guess) and that I probably had something called Femoral Pain Syndrome or Runner’s Knee. He recommended physical therapy, a knee brace, and said I should be fine in a few weeks. He also prescribed me a six-day dose down anti-inflammatory pack, even though I told him no swelling had ever occurred.

I took my meds, went to physical therapy as instructed, and did my exercises religiously. I was also told to ice my knees as well. After about the first week of physical therapy, my right knee pain became worse and I called the physical therapist. He told me to cut down on the number of reps for my exercises and to continue icing my knee. After about two weeks of physical therapy, and still seeing no improvement, I began to experience the same exact pain in my left knee.

This obviously confused me because I was pretty much inactive minus my PT exercises yet I was having the same horrible pain in my left knee now. I told my physical therapist who instructed me to now do the exercises on both my knees. About a week after that I was in such horrible pain I could barely walk. I spent an entire weekend on the couch with my legs propped up because for some reason, the knee pain was worse when my knees were bent. I couldn’t keep them perfectly straight either, so it was a tricky, annoying, and painful balance to get my knees feeling as best as they could.

After that, I went back to a different orthopedic knee doctor in the same practice to now get x-rays on my left knee as well. Once again, the x-rays showed up better than normal and I was told to continue PT. Right before the doctor left I told him my right elbow was starting to hurt a little bit and asked if I should be concerned. He checked it out briefly, said I was perfectly fine, and sent me on my way.

About two weeks later the pain in my right elbow, the same exact pain that I was experiencing in both my right and left knees, began to worsen. I was beginning to notice a trend and became very worried. I then had a blood test done by my primary care physician and my results showed that I had pretty high ANA levels. My doctor was very concerned and thought I may have Lupus or another connective tissue disease, so she sent me to a Rheumatologist to get more extensive blood work done. In the meantime, I was prescribed a different type of anti-inflammatory medication, just in case. It didn’t help at all.

The first Rheumatologist I went to asked me several questions, took my blood, and prescribed me yet another different kind of anti-inflammatory medication. Three weeks later, and still no better, I went back to the doctor to get my lab results. My blood work came back negative on everything, and I mean everything. The Rheumatologist went over pages and pages of my blood work and showed that everything was either negative or in normal range. Confused by my blood work, he wanted to test me again, and even tested me for rare diseases such as Lyme disease. Once again, all of my results came back fine. He did think I had hyper flexibility though, which may cause the pain, but didn’t say much more about it.

By this time it was the middle of April and my pain had now focused in on both my knees and both my elbows. A family friend suggested I see a sports medicine doctor, so I did just that. There I had x-rays taken yet again and was told, yet again, that my knee structure and elbow structure was in perfect condition. He seemed to believe that nothing was anatomically causing my problems and suggested I get a second opinion with a different Rheumatologist. Just to be certain though, he gave me a cortisone shot in my right knee and said I should feel much better in 4 to 5 days if it was injury or physiologically related. Much to my dismay, the cortisone shot didn’t help at all.

This led me back to another Rheumatologist who took my blood again. He agreed that I had hyper flexibility but thought that my pain was more physical than autoimmune, despite the fact that the anti-inflammatory medicines, cortisone shot, and physical therapy did nothing at all to help ease my pain. More so, I periodically take prescription pain medicine for my back (I have scoliosis) and the pain medicine also did not help my joint pain.

My latest lab results came back fine and I have currently been on medication for Fibromyalgia. The pain is still very present and very painful and I am obviously more than frustrated and upset. I am 22 years old and I just want my normal, active life back.

To be clear, the pain I am experiencing is a chronic pain, hurts worse when bent, and is extremely sensitive to touch. I can pin-point exactly where the pain is (it moves around the knee and elbow joint) just by touching it. I can also feel a constant throbbing pain without even touching my knees or elbows.

I have not been responsive to icing it, physical therapy, several anti-inflammatory medications, a cortisone shot, prescription pain medication, and fibromyalgia medication. I have never experienced any sort of swelling nor do I feel stiff in my joints. It is just a constant, horrible, sometimes throbbing pain that will not go away. Also, the only change in my lifestyle or daily medications around the time my pain began was my birth control. I have no idea if this could be the cause of everything, but I switched from Tri Sprintec to Ocella about 3 to 4 weeks before my pain started. Could this be related at all?

I am begging for someone to help me. I need a Dr. House immediately to help solve this horrifying medical mystery. Please, if anyone has any advice, suggestions, or anything, please let me know. Thanks.

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2 Replies:

  • Ok, I may have some advice for you,since I was diagnosed with fibro also,but it wasn't. I have always been hypermobile,double jointed,whatever they call it now days.My left knee started dislocating when I was 16.I put my knee back in place for 14yrs on my own,Iuntil it went so far out I wasn't able. Long story short, I am now 37yrs old,has had 6 knee surgeries,& am now without knee caps! The disease is called Ehlers Danlos.It involves collagen production,ligaments,tendons,teeth,eyes,& your joints.It is a genetic disorder,transfers from Dad to daughter,Mom to son.There are also many types of EDS,it can affect your heart,down to your feet! You need to see an Ortho,mention EDS,& they'll do bending tests or blood tests to see.I had to drop out of college my senior year because I was in so much pain I couldn't function. My right hip is getting bad,& my right leg will never be painless.My Dr says I'm lucky 2 have the mobility I do have. But still I have horrible problems w/ circulation,which can be so painful! I am a chronic pain patient,& probably will be for life. I have good days as well as bad, but I know peeps which are much worse. I hope this can help you somehow. It's just Fibro symptoms & EDS over lap in so many places. I was 26 ish when my pain got out of control,so I really feel for you! I have no idea what part of the country u live in,but I know some great Dr's. My email is jeniferryser@gmail.com if u have any ?s. I hope I'm nout in trouble 4 giving it to u, but I had to reach out after reading your symptoms & going thru years with no diagnosis. It sucks & I know how you feel. Good luck to you,I hope you you get your answer! Jenifer
    JeniferLyn 1 Replies
    • August 31, 2010
    • 08:54 AM
    • 0
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  • Did you ever find an answer? I know this was posted a year ago, but I am experiencing the same things and the Dr.s can give me no answer as well, they just keep saying its a virus-but I am on 2 months now and the pain keeps moving to different joints and getting worse. The only difference is that it is also in my wrists-both and I don't have hyper flexibility. Any thoughts? The pain started in both knees and slightly in my left elbow After a month and a 1/2 it actually got better to where I could have no pain-but couldn't bend down or exercise...then out of the blue the pain came rushing back again and moved to my elbows and wrists. Thanks for any input!
    Anonymous 42789 Replies Flag this Response
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