Discussions By Condition: Muscle conditions

Joint pain, can't get a real diagnosis

Posted In: Muscle conditions 7 Replies
  • Posted By: Anonymous
  • May 16, 2007
  • 06:45 PM

I am a 29 year old female, with a history of join problems, and recently had a very severe flare up disabling arthritis, yet I can't seem to get any real diagnosis or treatment.

Here's my history: As a child I had idopathic arthritis in my knees and ankles. It disappeared around age 10. At age 15 I began having arthritis in my hands and wrists - the doctors wrote it off as tedonitis, but now my doctors are saying it is arthritis. I also began having low back pain at age 15. It is on either side, but no usually on both at the same time. The doctors said it was an injury, yet I was never injured and this back pain continues to come and go almost 15 years later. In my early 20s I also began having arthritis type pain in my feet, I notice it especially around my menstrual cycle. After my son was born I began having episodes where my neck hurts and I can't turn it very far in either direction, I will also have pain in my upper back. Also after my son was born, my hips began popping constantly. A few years later, at age 28 I woke up one day with terrible pain in both hips. I was dx with torn labrum and osteoarthritis is both hips and in the lower spine. I had steroid injections in both hips which helped tremendously - I no longer limp or walk hunched over. I also get intermittent shoulder pain that feels like arthritis pain, but does not show up on xrays.

Throughout all this, I have always been prone to bouts of fatigue and anemia.

My RF, ANA, and ESR all come back negative. My MRIs have not shown inflammation so far. My ortho thinks my hip MRI/xrays look like a rheumatoid patient, and my primary doc thinks I may have seronegative arthritis. My rheumy said I just tore my labrum and have osteoarthritis and will not treat me, I feel like she thinks it is all in my head. As I have military health insurance, my insurance will not cover another rheumy visit. I am going to pay out of pocket for another opinion, but I want to go to that appointment with all the information necessary, and the right questions to ask. Any help is appreciated!

Reply Flag this Discussion

7 Replies:

  • Hi in my humble opinion i think your primary doctor is probably closest to the mark. Your symptoms seem to match with those seen in patients with some type of reactive arthritis which is similar to seronegative arthritis. Do you suffer from psoriasis, or has anyone told you that you are HLA-B27 positive if so it is more likely that you have some form of reactive arthritis. i think you are spot on in getting a second opinion from another rheumy .
    Anonymous 42789 Replies Flag this Response
  • Original poster here - Thanks for the reply. I haven't been tested for the HLA-B27 but I am going to request it from my PCM before I go to the rheumy.I also just requested my medical records and I have "loss of lumbar lordosis" or "flatback" and other signs of Ankylosing Spondylosis or a similar condition. Since there was no inflammation on my MRI these other signs don't matter. Isn't it crazy that you can have so many symptoms of a condition, but the docs can't/won't do anything without labs to confirm.Also, I do have obvious inflammation in my hands - the knuckles get red, hot and swollen on a regular basis. Is that a normal part of osteoarthritis?
    Anonymous 42789 Replies Flag this Response
  • You have to understand that with an amount of the lawsuits this doctors are facing everyday, they must do everything by a protocol. That protocol, unfortunately is not necessary in your best interest. One important thing is to realize that your health is your responsibility. Therefor you will benefit greatly from doing as much research and self education on the subject as possible, and looking for a right person to assist you in finding a proper solution.From what you have describe on this post there are:1. Postural & Structural issues that require Corrective Exercise Program & Chiropractic Care2. Elevated Stress levels from years of chronic pain3. I would suspect a dehydrationI would recommend:1. Book "How to Eat, Move and Be Health" by Paul Chek NMT, HHP2. Listen to my WholeLiving Podcast Episodes 1 and 2http://feeds.feedburner.com/WholelivingPodcast3. Recommended water intake is 1/2 of your body weight in ounces of water per day 4. Find a C.H.E.K practitioner in your area or travel to see one. They are train do design an individualized exercise programs for postural correction and subsequent injury rehabilitation.5. S.O.T Chiropractor (Sacro-Occipital Technique) will be very helpful6. Saliva Adrenal Stress Profile home test kit by BioHealth Diagnostics
    Aram Ovsepian 18 Replies Flag this Response
  • hello again your loss of lumbar lordosis indicates you have some mechanical / postural problems going on. I think that an mri can only detect inflammation when it is severe. As far as the symptoms in your hands go this sounds more like reactive arthritis or rheumatoid arthritis. Good on you for taking charge and informing yourself about your health it sounds as though you have a complex health problem that spans at least two different types of medicine good luck in finding someone who can diagnose and treat you.
    Anonymous 42789 Replies Flag this Response
  • Have you been tested for Ehlers Danlos syndrome? It does not show on MRI's or X.rays or blood tests though some kinds will show up with a biopsy. Check out the Ehlers Danlos National society websites for more info on the types and how they are diagnosed. The reason I am mentioning this is due to your symptoms of flare ups which get progressively worse during your menstrual cycle that’s very common in this condition due to the change in hormones making people with EDS more lax (EDS is a condition where the connective tissue is very fragile causing the person to have lax ligaments). You also state you have the beginnings of flat back syndrome which is very common in EDS as well as Ankylosing Spondylosis. The obvious signs of swelling on your fingers can also be a sign even if you do not have any clear markers in your ANA tests. The pain in your back that appears to travel about from side to side is very typical of this condition because we have very odd posture. The foot pain could be put down to plantar fasciitis or similar problems caused by lax ligaments in the feet. The hip problem during pregnancy will have been caused by the release of relaxin that every female has, this causes the birth canal to soften helping it widen more in preparation for birth. If you have EDS this is the last thing you need because your ligaments are already lax and you will end up with very lax hips probably they will pop out of the joints. The shoulder pain that does not show up on X-ray can also be a sign of EDS. The joint sliding partially out of the socket can cause it. If you live in the US then a visit to a geneticist can diagnose this condition if you live in the UK then you will need to find a rheumatologist that knows about Ehlers Danlos syndrome, unfortunately this is not as easy as you would think due to it once been thought of as a rare condition.
    Anonymous 42789 Replies Flag this Response
  • Original poster here - thanks for the info about EDS. It was interesting to me because of the skin involvement, especially that sutures will not hold and the tendancy for perineal tears. I had a 3rd degree tear when my son was born, which progressed to a 4th degree tear two days later. I was stitched up two separate times, but the stitches would not hold, and I was left to heal on my own. I don't think I ever mentioned this to the rheumy. I know my OB/GYN found my case to be very uncommon, I think the entire GYN floor consulted on my case.
    Anonymous 42789 Replies Flag this Response
  • It is possible to find a surgeon who knows about EDS to stitch up the injury and help prevent further complications. A plastic surgeon is generally the best for this work. Leaving the sutures in longer than normal also helps, as healing in EDS takes far longer than in the average person. I hope you get to the bottom of your problems and someone actually listens to you
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.