Patient Comments: Connective Tissue Disease - Diagnosis

How was your connective tissue disease diagnosed?

Comment from: dismissed, 25-34 Female (Patient) Published: October 31

I've had chronic aches and pains since childhood. Initially it began with ankle pain that was dismissed as "growing pains." By the time I was 10 I started having lower back aches and by the time I was 18 this pain was worse and more chronic. (Side note: I was a dancer from 3 years to 18 years of age) After seeing countless doctors I was finally diagnosed as hypermobile when I was 25. At 26 I started taking medication (Cymbalta), which has helped for mental clarity. The pain has progressed with age and spread to the majority of my body (fingers, toes, hips, back, neck, etc.) I am now in my 30s, I was recently given a Beighton score 7/9 and told I likely have more than one issue going one - HMS (hybermobility syndrome) or BJHS (benign joint hypermobility syndrome) + CFS (chronic fatigue syndrome) + Fibromyalgia. I'm currently trying Cymbalta and Lyrica in addition to pain medications as needed.

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Comment from: Mabs, 65-74 Female (Patient) Published: October 15

I have had a number of diagnoses which started with Primary Biliary Cirrhosis and ended with UCTD (undifferentiated connective tissue disorder) over 15 years.

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Comment from: itsbillertime, 25-34 Female (Patient) Published: September 23

I have been suffering from joint pain, swelling of extremities, dry eyes, stomach pain, severe pain in arms at, especially at night, vomiting, nausea, etc., for about five years. No one could diagnose my problem. Finally, about two months ago, my primary care doctor passed away and his nurse practitioner saw me for swollen feet and hands to the point they were about three times their size and I was in extreme pain. She did some blood work and I was diagnosed with connective tissue disorder. I have been to two different rheumatologists, but all they have done is blood work about four times and told me I probably have several autoimmune deficiencies. I see a pain management doctor who has urged me to seek a specialist in this field, which I cannot find. He has put me on hydrocodone and Lyrica, but it still hasn't helped.

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Comment from: ShariG, 35-44 Female (Patient) Published: February 04

I have a connective tissue disorder. I'm very stiff, especially in my hips. I take an anti-inflammatory prescribed by my doctor. It helps some, but not all of my pain. So far the best thing I've found is weight training. I lift weights a minimum of 3 days a week, paying attention to the areas where I have the most pain. If I miss a week, I can definitely feel the pain go up. It does not work over night, but I suggest joining a gym, and get on a regular program. Hopefully in a few months you will feel some relief.

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Comment from: Damien Woody, 25-34 Male (Caregiver) Published: September 16

My sister is suffering from rheumatoid arthritis since the age of 16. Presently she is 33 years old and has a three year old son. Current laboratory tests show that her RA factor is 82.6, uric acid 5.1 and ASO 507. Now no joints are left for swelling. She has been suffering from right hand wrist stiffness and left hand elbow stiffness and other parts are going stiff with heavy pain, even she can't sleep due to heavy pain in shoulder muscle and joint pain. For removing pain she takes aciproxyvon (twice) and sazo 500 daily for the last 2 years and more under the advice of a local doctor.

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Comment from: CuriousQuestions, 13-18 Female (Patient) Published: November 09

After years of joint problems my doctors told me to look up connective tissue problems. I went to a special doctor, who took measurements of how I could bend my arms, knees, neck, back, etc, and how I could pop them out easily. I'm only 16, but I've lived with this my whole life. I have no idea where I'm going next with this information.

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Patient Comments

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Connective Tissue Disease - Treatments Question: What was your connective tissue disease treatment?
Connective Tissue Disease - Experience Question: Please describe your experience with connective tissue disease.
Connective Tissue Disease - Signs and Symptoms Question: What were the signs or symptoms associated with a connective tissue disease in you or a relative?

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