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    Community Voices

    RNP + Ana +

    Hi everyone! I was wondering if anyone could help me… I tested + for covid 1/6 and had a severe case of it… I am still on leave from work. I have had heart issues plus the breathing of course and severe leg pain. I was on prednisone 26 days and 3 rounds of antibiotics. The severe leg pain improved while on prednisone so maybe it is myositis? I was so slow at getting better that my dr tested me for autoimmune and my ANA and RNP were both +. I know that is mixed connective tissue but is there a lupus component with that? I have the malar rash, hives, severe gerd, and neuro issues that started in 2015. I am slowly getting better but will probably only work part time when I return to work… I work in a hospital so now I’m worried about being around so many germs after all this. Does anyone have any advice on the RNP? My appt with the rheumatologist isn’t until august 4th. #RNP #AutoimmuneDisease

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    Community Voices

    The conflicting emotions that go with waiting for test results. #Fibromyalgia #MyastheniaGravis

    I’ve had new symptoms that are due in part to myasthenia gravis, and in the bloodwork rheumatoid arthritis and lupus markers were found. I’m now waiting on a myositis blood panel, nerve conduction test, and possible muscle biopsy. There’s a special kind of fatigue making appointments with various specialists, getting blood drawn, another follow up with someone else, making appointments to go over those, etc. I completely and totally understand why they do all this, because if they can figure out exactly what I have going on, we’re all going to be better off with targeted treatment. But OH MY GOODNESS the wait. Then more waiting. And these poor overworked health care physicians and nurses and the whole healthcare system. I’m conflicted because I want them to find something to help them help me, but I’m afraid of what that something is. I look forward to confronting whatever this is so I can try to manage it best I can. #Fibromyalgia #MyastheniaGravis #Myositis #rheumatoid #Lupus

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    Community Voices

    "How Are (Really) Feeling?#ChronicPain
    #Myositis ,

    Yes, you !

    One thing, one Really Big LittleThing, that I said, starting as a child, was (when asked how I felt?)

    (pick just one,)

    -not too bad
    -a little sore
    -kind of tired
    -having tummy trouble
    a little sleepy,

    And then, I always said, "and how are you"?
    I turned it back.
    (because having attention focused on me, gave me anxiety). Why?

    My Momma had made it painfully clear, just how aggravated she was when I was sick or home from school. I was sick a lot, especially from 1st to 9th grade. Streph, EBS, Bronchitis, Allergies, Colds. Aches, sprains, broken bones. She also hated driving, and Drs., So I was usually treated by a phone call, and an RX for Amoxicillin.

    I always cared more for others, and I really wanted to be happy, active, an asset, loved, appreciated.

    But, my mistake was that of being afraid to push others away if I were to be negative, or honest, about how I was.

    That little habit turned out to spite me, by making me "sound" stronger or healthier mentally and physically, than I really was.
    People wanted to be released from having to care about it.

    So, when I started needing those same people to hear me, to realize that I felt worse, or my condition was/is really serious, they found it hard to process.

    All my years of saying, "I'm Okay", had Brainwashed them into refusing to think that I was not "Okay, or Just Fine, or Well Enough". So, Then, when I did limp, or crash, I felt like they saw me crying wolf! Poor Me!

    My desire to make things easier for everyone else, cost me my family, and my nice life. Because for 25 years I've been increasingly deteriorating, but they don't have time, anymore, or compassion, or empathy, to see how much I truly need them.

    Don't Sugarcoat your feelings. If they seem too sharp to share; If you can't get the right thoughts out, try writing them as letters, or using a journal that you could share, at times. Stick up for yourself!

    And there may be times where you have to call your problem, an "8-9", instead of a "3-4", so they sit/get up or notice, you Really need help. You really Deserve it! So do I.
    #MixedConnectiveTissueDisor -ders

    3 people are talking about this
    Community Voices

    Too Many Obstacles to Bear …

    <p>Too Many Obstacles to Bear …</p>
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    Community Voices

    Can myositis cause a sprain?

    I was diagnosed with UCTD two years ago, with my symptoms follow Dermatomyositis and Lupus patterns. My hips are particularly week, despite consistent weight lifting and physical therapy.

    The muscle weakness causes me to stumble often. Yesterday when I stumbled, I caught myself before falling by engaging my hamstrings. I immediately felt pain. My physical therapist told me today that I should visit my orthopedic surgeon because I likely tore my hamstring.

    Is this normal? For myositis to indirectly cause an injury? Just wondering…

    #Myositis #UndifferentiatedConnectiveTissueDisease

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    Community Voices

    Lymph pain but not enlarged?

    <p>Lymph pain but not enlarged?</p>
    9 people are talking about this

    Why We Need More Myositis Awareness

    Myositis is a group of inflammatory myopathies that are most commonly thought to impact the muscles (which they do) but they can also affect the heart, lungs, GI tract, and be associated with the development of cancer. Myositis is considered autoimmune in nature; the body begins attacking its own muscles, connective tissue, skin, blood vessels and other organs. It is estimated that between 50-75,000 people in the U.S. have one of the forms of myositis. This makes it among the rare diseases. As such, there are no dedicated treatments or therapies that have been developed specifically for any of the inflammatory myopathies. Broadly, there are three main types of myositis: dermatomyositis, polymyositis, and sporadic inclusion body myositis. Typically, the easiest to diagnose because of its hallmark, purplish, skin rash, is dermatomyositis. The rash that accompanies dermatomyositis most often forms on the face, upper back, chest, elbows, knees and knuckles. It is more typical for muscle weakness to come later in the progression of dermatomyositis. After the disease process starts to take hold, vasculitis, or swelling of the blood vessels, begins to cause the muscles closest to the core of the body to become weakened. It is most common for muscle weakness to be symmetrical and progressive. As with polymyositis, the kinds of drugs used to treat dermatomyositis are typically immunosuppressive and anti-inflammatory drugs. Often, high-dose prednisone is used to try and halt the disease’s rapid progression, while drugs like azathioprine, mycophenolate, and methotrexate might be used for long-term treatment. Sporadic inclusion body myositis (sIBM) is the most common of the inflammatory myopathies and generally impacts individuals after the age of 50; because of its slow progression, experts aren’t actually sure that’s when the disease typically starts, but it is most commonly diagnosed after that age. Unlike other forms of myositis that may be relapsing/remitting in nature, sIBM is progressive — the body is continuing to atrophy once the illness has been acquired. This form is distinct in a couple of other ways too. Unlike other forms of myositis, the weakness in sIBM is not necessarily symmetrical in its presentation. Also, rather than wasting that begins with the proximal, or core muscles, sIBM often begins with distal muscles like the feet, hands, ankles and lower legs. Having difficulty with falls, balance, or drop-foot are common complaints at the onset of sIBM. The symptoms of sIBM and rate of progression varies significantly from person to person and can speed up or slow down over time with little rhyme or reason. Because of its many faces and how difficult it is to diagnose, patients with sIBM often go undiagnosed for many years. Their diseases are also often misdiagnosed as the effects of aging, as multiple sclerosis, or as polymyositis. Polymyositis, like other myotises, is often referred to as a “muscle wasting” disease. Inflammatory cells work into the fibers of smooth (skeletal) muscle tissue and burst the muscles, dissolving them right off the bone. It can be slow or rapid in its progression and can be more difficult to identify because it does not have any external markers (like dermatomyositis’ rash) to make it evident. It is most common for polymyositis to begin, like dermatomyositis, with the core or proximal muscles being symmetrically impacted. I have myositis, and my complaints began with things like, “I’m having trouble rising from a seated position.” I started needing assistance getting off the couch or toilet. Then it progressed to I can’t lift my arms above my head to wash my hair, and eventually the inability to roll over in bed without assistance and having difficulty swallowing. Unfortunately, once muscle fibers are destroyed, they cannot be recreated. Therefore, the rehabilitation after the onset or relapse of the condition (both poly and dermatomyositis are relapsing/remitting conditions) is arduous and contingent upon beefing up what muscle remains. Like dermatomyositis, the drugs used to treat polymyositis are typically immunosuppressive and akin to the drugs given to RA patients. Rheumatologists specialize in the treatment of rheumatologic or autoimmune diseases. Therefore, it is typical for those of us with myositis to have a rheumatologist (if we are lucky) to monitor our condition and treatment. However, I live in a city with a population of approximately 175,000 people and see a very competent rheumatologist and I am his only myositis patient. In addition to seeing a rheumatologist, because of the way these diseases impact multiple systems, it might also be necessary to have a neurologist, dermatologist, and/or cardiologist consult about aspects of the condition. While these diseases are said to not have any genetic link, the only other person I have known with polymyositis is my mother. So… That leads me to believe they don’t have enough evidence to understand what the genetic links of these diseases may be. What is also true is that those of us who have one autoimmune condition are at great risk for having multiple autoimmune conditions. Fun. May is Myositis Awareness Month. Thanks for hanging in here and educating yourself about this rare disease. If you are seeking resources for yourself or a loved one about these muscle-related conditions, you can get more information, you can find connections, and learn from experts at and

    Wendy Kennar

    Lessons From My Undifferentiated Connective Tissue Disease Diagnosis

    Ten years ago, when my rheumatologist diagnosed me and finally put a name to my mystery illness, all I felt was gratitude and relief. My doctor told me it was an autoimmune disease called undifferentiated connective tissue disease (UCTD). He described UCTD as having overlapping symptoms of lupus, rheumatoid arthritis, and myositis without it being any of those more well-known diseases. I had a name, (a name so long it warranted an acronym!) that explained the pain, weakness and fatigue in my left leg. To hear it was an autoimmune disease and not a fatal illness (before diagnosis, other specialists had tested me for cancer and leukemia), seemed like absolutely fantastic news at the time. I incorrectly jumped to the conclusion that having this autoimmune disease would be just like living with asthma. I’d had asthma since elementary school, and I managed it by periodically using my inhaler and sometimes adjusting my physical activities. But I didn’t consider asthma to be life-changing. And I figured UCTD would work the same way. My rheumatologist put a name to this illness, but there was much more he didn’t tell me. Looking back, I wish my doctor had kept me in his office a while longer, to go beyond the basic description, to give me a heads-up that my life would never be the same. In my naiveté, I received a diagnosis and assumed I’d learn to live with this chronic condition. I truly believed I would take some medication and get better. But 10 years later, I know that’s not how it works. Now I know that while getting a diagnosis is huge, it certainly isn’t the end. It doesn’t mean the questions are all answered. There are still symptoms, flare-ups, inconsistent test results that my doctor can’t explain or fully understand. I’m still subjected to a battery of tests and consultations with other specialists. Sitting in my doctor’s office, I didn’t completely understand the definition of UCTD. It’s not merely an autoimmune disease. It is a chronic illness. But, it’s a chronic illness causing me chronic pain. And that’s the biggest difference between my autoimmune disease and my asthma. No one told me this would be all-encompassing. That having an autoimmune disease was like having an octopus in my life, tentacles stretching out and touching one area of my life after another. Chronic illness with chronic pain isn’t something that can go in the background, on the back burner. It’s not always front and center either. But it certainly can’t be ignored. Since then, I’ve also learned that a diagnosis isn’t the answer. It was merely an answer, a name or label for something that up until that point hadn’t yet been identified. The worry, the confusion, the frustrations and the fear didn’t disappear with my diagnosis. That morning, 10 years ago, when my husband and I sat across from my rheumatologist to get the news, my doctor did tell us UCTD is rare. “Most people have never heard of it. So if you want to walk around and call it ‘The Kennar,’ you can.” I think we chuckled good-naturedly. I think I made a joke about always priding myself on “daring to be different.” But since then, I’ve changed my mind. Living with an unpredictable chronic illness causing chronic pain is hard. And I don’t want to be rare and different in this instance, to be experiencing a medical condition most people (including some of the doctors I’ve met with) have never heard of. If I’m destined to live with a chronic medical condition, then I’d prefer it to be familiar. I’d prefer a disease that doctors can easily understand and treat. Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car.

    Community Voices

    Where do you look here to find a list of symptoms and possibly a diagnosis based on those symptoms?

    I don't know where to start as this is ongoing with many other things diagnosed and misdiagnosed . Here it is: IGD, leukemia cutis uncertain(but I can discredit that myself), RA possibly, myositis possibly (many symptoms that keep cropping up but may be attributed to the undiagnosed condition. Have you stopped reading-I have.

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    Community Voices