Patient Comments: Connective Tissue Disease - Diagnosis


How was your connective tissue disease diagnosed? Submit Your Comment

Comment from: Tigger32810, 55-64 Female (Patient) Published: April 09

I was just diagnosed today with connective tissue disease. I had a positive ANA and negative rheumatoid factor, so my primary care doctor sent me to see a rheumatologist. After another 90 lab tests and x-rays on hands and hips, she has diagnosed me with mixed connective tissue disease (MCTD). I have been placed on hydroxychloroquine once daily and to continue with my narcotics (for pain management) and continue with my Flexeril for my fibromyalgia. I work a very active job part-time 7 days a week... helps keep me moving.

Comment from: Debbie gunter, 45-54 Female (Patient) Published: October 17

Sadly my daughter passed away before getting her diagnosis of Loeys-Dietz syndrome. Her daughter, my son, and I, all have been diagnosed with connective tissue disease after positive genetic diagnosis of my granddaughter following private rheumatology referral. My daughter was born with many clues to this illness, too many for it to have been a diagnostic mistake! I believe that the first consultant that she was under for club feet prevented her and us from getting a diagnosis that would've saved her life.

Comment from: Rocknaway, 35-44 Female (Patient) Published: June 21

I asked the doctor for a blood test (ANA) after 2 of my cousins were diagnosed with lupus. She said it was a low positive and suggested connective tissue disorders. She also said we would have to watch it (do more blood tests later) for progression and if ibuprofen and Tylenol aren't working well enough then we will need to talk about more aggressive treatment and fibromyalgia.

Comment from: Liebran, 65-74 Female (Patient) Published: January 10

My blood test showed high levels of immunoglobulins. And the symptoms of connective tissue disease were joint pains, costochondritis (frequent), muscle aches and fatigue.

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.

Comment from: Roger, 65-74 Male (Patient) Published: March 17

I went to the doctors for years with my complaints of pain in my tendons, fascia, joints, back, etc. They take my blood pressure and blood for test, and give me blood pressure medicine and statins. They are incompetent. I'd rather see a machine for advice on connective tissue disease.

Comment from: DJ, 55-64 Female (Patient) Published: May 17

My connective tissue disease was diagnosed by a special blood test. My whole body was in pain all the time.

Comment from: Mooster, 45-54 Female (Patient) Published: March 22

I was diagnosed with connective tissue disease through a blood test marker.

Comment from: Febbie, 13-18 Female (Patient) Published: July 27

I have recently been diagnosed with a bone spur in my hip. The pain is so intense it radiates down my leg to the bottom of my foot. I have tried steroid injections and got no relief, my doctor is going to put the next one in my sciatic nerve. I cannot get away from the pain and am limited getting around to do almost everything.

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.

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.


Rheumatoid Arthritis (RA) Symptoms & Treatment See Slideshow
Comment from: Mary, 45-54 Female (Patient) Published: May 24

Four plus years ago I had shingles around the top of my chest down my right arm to my elbow and around my left shoulder to the middle of my back. It was very bad, and I had viral treatment etc. I had large scabs that drove me mad itching. I was ill for several weeks, but I recovered slowly. Now after 4 plus years, I still have muscle pain. It is very painful, painkillers help but it never goes away.

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.

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.

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.

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.

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.

Comment from: prostate paranoid, 45-54 Male (Patient) Published: August 29

My connective tissue disorder was diagnosed by my pharmacist after looking up side effects of the drug FLOMAX.

Comment from: Linda, 65-74 Female (Patient) Published: June 29

I have been diagnosed with connective tissue disease. Initially took high levels of Prednisone then tapered down to 5mg daily for the past year. This is working for me. I still ache most every day, but not to the degree I used to. I stretch and go to a gym 2 to 3 times a week. Prednisone has numerous side effects, but I'd rather put up with them than the debilitating pain I used to be in. In other words, Prednisone gave me back my active lifestyle and I'm now 68.

Comment from: 25-34 Male (Patient) Published: June 20

My connective tissue disease was discovered through an aortic dissection. Open heart surgery was performed and a sleeve was placed over the aorta to repair.


The term arthritis refers to stiffness in the joints. See Answer
Comment from: mary L., 65-74 Female (Patient) Published: June 01

My connective tissue disease was diagnosed through a blood test. This was done before having a parcial knee replacement.

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