Patient Comments: Connective Tissue Disease - Diagnosis

How was your connective tissue disease diagnosed?

Comment from: carol, 55-64 Female (Patient) Published: March 20

I was finally diagnosed with connective tissue disease after anti-nucleic antibody (ANA) blood test was done.

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Comment from: Jan, 75 or over Female (Patient) Published: January 16

I had stomach ache for hours from November 2010 until January 2011. I saw the family doctor, was sent to surgeon and on 1/25/2011 was operated on for left groin hernia and partial gangrened bowel. I had another hernia in May 2011, another double one in August 2011 and bowel put back in, one more in May 2012 and numerous holes and repairs. I had infected gall bladder removed 11/25/2014 and doctor found a large hernia again and I just had 5th hernia involving intestines repaired 1/8/2015, which was about the size of softball and grew a lot before removal last week. I was told connective tissue is no longer holding and he used patch, tissue, and patch over that. I have no clue how many more but he said there would be and that there was nothing that could be done about it. I am trying to find out why and if medicine can be used to treat it. I am in painful recovery and trying to heal. I wish someone could help me. I am 78 and have chronic back pain, and many health problems. I don't know if there is any doctor who diagnoses it, other than the surgeon in my area.

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Comment from: LindseyNS, 19-24 Female (Patient) Published: July 15

My connective tissue disease was diagnosed when I had extreme pain throughout my chest and left side and pain and swelling in my knees and ankles, with painful inflammation under my skin throughout my legs.

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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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Connective Tissue Disease - Treatments Question: What was your connective tissue disease treatment?
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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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