I am diagnosed with Undifferentiated Connective Tissue Disease (UCTD), a systemic autoimmune disease. This means that the disease affects my whole body, and that my immune system, “which normally protects you from outside invaders such as bacteria, turns on parts of your own body and attacks them as if they were invaders. Connective tissue is the 'glue' that supports and connects various parts of the body; it includes skin, cartilage, and other tissue in the joints and surrounding the heart and lungs and within the kidney and other organs." This often causes many parts of my body to feel constant pain due to the inflammation of this connective tissue. (UCTD: FAQ)

"Connective tissue diseases" represent autoimmune diseases involving connective tissues throughout the body (joints, cartilage, muscles, and skin). They can also develop involvement with internal systems such as the eyes, heart, lungs, kidneys, gastrointestinal tract, bone marrow, nervous system, and blood vessels. Thankfully, this is not the case in all individuals; although the disease may continue to progress later in life to involve these systems, or to meet diagnostic criteria for a defined disease. Lupus, scleroderma, and psoriatic or rheumatoid arthritis are some of the more well-known connective tissue diseases, but Sjögren’s syndrome, Raynaud's, myositis, and vasculitis are other examples. (AARDA)

What makes it “undifferentiated”?

When someone exhibits features of connective tissue disease, but "do not fulfill the diagnostic criteria established for any one disease... they are often considered to have ‘undifferentiated’ connective tissue disease. Over time, people with UCTD may evolve into one of the more specific connective tissue diseases, such as lupus, Sjögren’s, or scleroderma." This is dependant on positive antibodies shown in blood work for those designated diseases. (AARDA)

"Although the word 'undifferentiated' sounds vague, it describes a real problem. It does not mean that a doctor does not know what to call the condition, it just means that all or most of the clinical features traditionally seen in lupus or another connective tissue disease aren't present, but some of those features are present.

The diagnosis of UCTD is one of exclusion. When the suspicion of an autoimmune disease is high in a patient because several features of one or more of these diseases is present, but signs and symptoms are insufficient to meet their criteria, UCTD is diagnosed.

This undifferentiated category is distinctly separate from another group of vague-sounding disorders called overlap syndromes. People with overlap syndromes have the clear features of at least two or more connective tissue diseases, and thus may meet the diagnoses for several at the same time. In contrast, patients with UCTD do not have enough of the features of a definite connective tissue disease (lupus, systemic sclerosis, or dermatomyositis/polymyositis) to be firmly classified with such a diagnosis. However, because they may have a few features from several known diseases, they are said to be "undifferentiated." (HSS)

Most common symptoms:

• Arthralgia (joint achiness)

• Arthritis (joints that are swollen and warm, often with redness of the overlying skin)

• Rashes, usually on the face and chest (worsens after sun exposure)

• Alopecia (hair loss)

• Raynaud's phenomenon (color changes in your hands and feet in response to cold)

• Oral ulcers (sores inside the mouth)

• Xerophthalmia (dryness of the eyes due to decreased tears)

• Xerostomia (dry mouth due to decreased saliva)

• Low-grade fever (usually under 100° F)

• Photosensitivity (development of rashes or other symptoms after sun exposure)

Some people also develop:

• Leukopenia – decreased numbers of white blood cells (cells that help fight infection) in your blood

• Anemia – decreased numbers of red blood cells (cells that carry oxygen to tissues in the body) in your blood

• Thrombocytopenia – an abnormal decrease in the number of platelets (the parts related to blood clotting)

• Pleuritis or pericarditis – inflammation of the lining surrounding the lungs or heart, respectively, which may cause pain in the chest, especially with breathing

• Neuropathy – abnormal nerve sensations, usually in the fingers or toes, ranging from numbness to tingling to pain

In addition to most of these, I myself and others also experience:

• IBS symptoms

• Heart arrhythmia (palpations) and intermittent chest pain

• Dyspnea (shortness of breath)

• Fatigue

• Joint inflammation and swelling

• Recurrent infections

(HSS)

Treatment:

• Non-steroidal anti-inflammatory medications (NSAIDS) such as Tylenol, ibuprofen, and naproxen for pain relief

  • Some of these are not recommended for those such as myself who have experienced GI bleeds in the past, as they can increase risk of bleeding

• Topical steroidal anti-inflammatory medications for local pain relief

• Anti-malarial drugs such as Plaquenil (hydroxychloroquine) to manage symptoms

• Some physicians may also prescribe short-term, low-dose steroids such as Prednisone to manage symptoms that are unresponsive to other treatments

Other medications may also be necessary to manage symptoms of related diseases that surface in response to the autoimmune status (gastrointestinal involvement, medication side effects, etc)

(UCTD: FAQ)

What does this mean for you?

While my disease affects my daily life, and I would like to say I try not to let it keep me down, this is, unfortunately, the way of autoimmune diseases. I am limited in my activities, and often have to take “rest” days to let my body recuperate from the stress it experiences daily. “Catching up on sleep” can be an entire day of my week, and is sometimes necessary to prevent exacerbated symptoms. As someone who grew up in the athletic and active equestrian world, a horse caretaker, a musician, a writer, and a traveler, accepting the label of “disabled” is an ongoing battle. I will discuss this battle further in an upcoming post, but in the end, I have come to accept my limitations as a challenge, not a burden. A shift of mindset, although often difficult, allows me to see that these trials are only leading me to find a solution for myself and my horses, a path that allows me to live comfortably without overdoing it, a way to coexist peacefully with my pain.

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https://www.yumpu.com/en/document/read/51794825/undifferentiated-connective-tissue-disease-uctd-the-lupus-

https://www.aarda.org/diseaseinfo/undifferentiated-connective-tissue-disease-uctd/

https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

https://creakyjoints.org/symptoms/what-is-undifferentiated-connective-tissue-disease/