Archive for the Week 10: Symptoms Category

How Do I Know I Have A.S. By Dana

Posted in The Blogs By Dana, Week 10: Symptoms on January 19, 2012 by Cookie Has A.S.

This is my next entry to post for the MOWer’s blog. The subject is Symptoms. Wow! What a topic!

If you get symptoms of a cold, you see your internist, primary or family doctor. Symptoms of a cold are pretty simple and well-known: stuffy, runny nose, scratchy throat, post-nasal drip, etc. It’s interesting, but if you tell someone you have a cold, they know what symptoms you have already, and there are the traditional treatments as well. You can take a decongestant, drink tea with honey and lemon, take Tylenol if you run a fever or if you have a sore throat even. For all of us with spondyloarthropathies, symptoms can be as different from each other as night and day, as hard to notice from one person to the next, and often stump doctors, even those that specialize in our rare problems~the rheumatologists.
I have been dealing with what I thought at some points in time were unrelated symptoms, then at other times began to swear up and down that everything I have been through in all my years have been related to the spondyloarthropathies that I (will) have been diagnosed with finally! The most difficult issue with all of this is that when you go to the doctor with 1 or 2 symptoms at a time, the frustration will blow your mind. It isn’t cut and dry. There is no certainty that your doctor will give you a diagnosis or even treat you for that matter. Meanwhile, you are trapped in a world of pain, weakness, disability, loss of your old self, and a feeling that you could even be losing your mind! One thing is for sure, no matter what symptoms you end up with if you are lucky enough to have one or more spondyloarthropathy, the physical symptoms will be there, and they might be similar to those you meet in the same situation, but you may also notice that they all end up questioning their mental state! Yes, it’s true!

When you have certain physical symptoms and no lab tests or x-rays or similar tests to back them up, doctors begin to question automatically if you really have these physical symptoms or if they are manifestations of something else going on~depression, anxiety, a psychiatric condition, or perhaps you appear to have drug-seeking behaviors because you are showing no real signs of pain but wanting something for pain! Well, with all of this, it is only natural to begin questioning yourself, “Am I really feeling these symptoms? Is my neck really this stiff? Is my lower back hurting so bad, I cannot sleep at night? Are the bottoms of my feet so painful that if feels like I am walking on hot coals? Are my joints really so stiff and sore that I can’t move them for 2 hours after I awaken in the morning?” When we can’t really answer yes or no definitively, it gets pretty scary for us!!!

The symptoms are real, don’t get me wrong, and I am in no way trying to make them seem unreal or to make light of spondyloarthropathies or their symptoms. After all, I am a person with spondyloarthropothies, and I know how real they are and that the symptoms are definitely REAL!! So now let me just talk to you a little bit about what I had to go through to finally get someone, anyone, to listen to me about my symptoms. Spondyloarthropathies tend to attack the body’s major joints, primarily were ligaments attach to bone. Like myself, many who suffer from a spondyloarthropathy condition are likely to experience pain and reduced mobility in the ankles, knees, hips and lower back that is much more significant in the morning or when waking. These symptoms may become less severe as the day progresses and have often been much less severe following exercise. Patients, like myself, suffering from spondyloarthropathy may also experience pain or stiffness in the shoulders and wrists that follows the same progressive improvement in severity as the other joint pain. Patients may also experience pleuritic chest pain which is characterized by pain in the chest area that may or may not be accompanied with breathing difficulty. It also can be due to costochondritis, which I have often and is very, very painful!!! This symptom alone is not enough to diagnose a spondyloarthropathy as this form of chest pain is also a common symptom of pneumonia, viral illness, a pulmonary embolism, heart attack, lung cancer or a pleural tumor. For that reason, any chest pain should be considered serious and warrants a doctor’s immediate attention for further testing to rule out anything that is critical and must be addressed immediately.

Weight loss, fever and fatigue are also common symptoms that present with all of the spondyloarthropathy conditions. I would say that for me, in the earlier stages, weight loss was severe. Then I began to gain weight as the disease progressed. Fever and fatigue has been around for as long as I can remember. I have daily fevers, low-grade, in the late afternoon and during the night. Fatigue continues to be a problem for me. Although medications have helped, I still continue to get exhausted and tire easily. I have very little energy, and I also do not sleep well which only makes the problem worse. Some spondyloarthropathies may also cause what is commonly known as sausage digit–a swelling of the fingers or toes. I had the sausage digits on a couple of my toes, which finally went away after starting on a biologic–Remicade. Some patients will also suffer from a heart murmur that will need to be monitored by a doctor as well. I have a history of a heart murmur that comes and goes.

Rheumatoid arthritis is likely the medical condition most commonly confused with spondyloarthropathy but is generally able to be ruled out by tests that reveal the rheumatoid factor is not present in the patient’s blood. Of course, this is not always the case because even those people with RA do not always test positive for the rheumatoid factor. Also, since it is quite possible that spondyloarthropathies run in families, a patient’s family history is also a good indicator of whether or not their condition is a spondyloarthropathy or rheumatoid arthritis. Again, this is not always true either because many of us have no one in our families with a spondyloarthropathy. We do not know, however, if this is the case because there truly is no one in our family history with a spondyloarthropathy or if there is a family history, and perhaps no one ever did anything about it~diagnosis, treatment, etc.

Initially, a patient suffering from spondyloarthropathy will experience pain or stiffness in the lower back; especially in the morning. That pain or stiffness will often gradually feel better throughout the day or following a period of exercise. Fatigue is also a common indicator that someone is suffering from this condition. They may feel worn out more quickly than previously or may feel tired much more often. In time the pain and stiffness in the lower back will spread further into the lower back and the buttocks. Treatment will likely not eliminate the symptoms entirely but should allow relief and prevent the condition from progressing further as quickly. Nothing has been proven to stop the progression of the condition entirely, but treatment will at least slow down the process. For many women, the first symptom is pain and stiffness in the neck, before the lower back, which does not mean that the lower back isn’t experiencing any problems. Many times, by the time, they feel symptoms in the lower back, the damage is already severe.

Because a major component of the eye is collagen just like the ligaments, tendons and tissue within joint spaces, it is reasonable to think that the eye would also be affected by the symptoms of spondylitis just like the joints. Thirty percent of people with spondylitis have had or will develop a potentially serious inflammation of the eye called iritis. (Acute anterior uveitis and iridocyclitis are additional medical terms to describe iritis.) I have had iritis/uveitis four times. Three of the four times I knew what to look for, but the first time, I didn’t even know that the inflammation was occurring. I was at my ophthalmologist for my yearly check up when it was found. This condition can cause blindness if not treated properly, so it is essential for you to recognize its signs and symptoms , and understand the important role you play in your eye health care. Symptoms often occur in one eye at a time, and they may include redness, pain, sensitivity to light, and skewed vision. By using a slit-lamp microscope, an ophthalmologist or specially trained optometrist can distinguish iritis from other causes of eye redness (such as from an allergy, trauma, or viral infection).[]

In a minority of individuals, the pain does not start in the lower back, but in a peripheral joint such as the hip, ankle, elbow, knee, heel or shoulder. This pain is commonly caused by enthesitis, which is the inflammation of the site where a ligament or tendon attaches to bone. Inflammation and pain in peripheral joints is more common in juveniles with ankylosing spondylitis (AS). This can be confusing since, without the immediate presence of back pain, AS may look like some other form of arthritis. Many people with AS also experience bowel inflammation, which may be associated with Crohn’s Disease or ulcerative colitis. Advanced symptoms can be chronic, severe pain and stiffness in the back, spine and possibly peripheral joints, as well as lack of spinal mobility because of chronic inflammation and possible spinal fusion. []

I have had symptoms of inflammatory back/pelvis pain, unilateral or alternating buttock pain, enethesitis–inflammation where a tendon or ligament attaches to the bone, peripheral arthritis, arthritis of the small joints, heel pain, fatigue, the scaly patches on the skin caused by psoriasis, skin rashes that commonly appear as thickened red or brown spots, scaling rashes on the palms of the hands or soles of the feet, pain and swelling in the fingers or toes, sometimes the swelling causing a “sausage” appearance, small indentations, lifting and /or discoloration of the fingernails or toenails, fingernails and toenails which may become thickened and crumble as if infected by fungus, pain and swelling in the joints, pain and stiffness of the spine, especially after prolonged inactivity, fever and chills, cystitis, which is an inflammation of the bladder or urinary tract, causing frequent urination and a burning sensation when urinating, mouth ulcers, inflammatory eye conditions of the eye such as iritis/uveitis or conjunctivitis which can cause redness, pain, blurred vision and sensitivity to light. I was told that I have sacroiliac joint involvement. I was also told several years ago that where the spine meets the pelvis looks like it was crushed in an automobile accident when I had an MRI done. I never had my pelvis/SI joints crushed in an auto accident.

There are several types of spondyloarthropathies, and a big difference is age of onset and which sex it affects more. General onset of AS commonly occurs in younger people, between the ages of 17-45. However, it can affect children and those who are much older. AS is more common in men, but occurs in women as well. Most individuals who have AS also have a gene that produces a “genetic marker”– in this case, a protein– called HLA-B27. This marker is found in over 95% of people in the Caucasian population with AS (the association between ankylosing spondylitis and HLA-B27 varies greatly between ethnic and racial groups. It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, a majority of the people with this marker never contract ankylosing spondylitis. Undifferentiated spondyloarthritis has an onset of the disease which is insidious and, even years of disease inflammation or calcification of the sacroiliac joints (the joints where the spine meets the pelvis) is often absent or mild on routine x-rays. According to some experts, the age of onset is very wide and tends to peak at age 50. Unlike AS, USpA is more common in females and only 20-25% of people with USpA are HLA-B27 positive. Some people with undifferentiated spondyloarthropathy later develop symptoms of the other forms of spondylitis, such as AS, but many will continue to have chronic, but not severe symptoms, and remain “undifferentiated.” []

In juvenile spondyloarthritis, sometimes the symptoms are episodic and unpredictable, seeming to come and go without an obvious cause over a long period of time. This cycle of disease flare up followed by remission may be repeated many times. It is important to note that the disease progression and the severity of symptoms vary in each person. Some children may experience a mild, short-term disease, whereas others experience a severe, long-term and disabling condition. The more common symptoms of juvenile spondyloarthritis include arthritic pain, especially around the heels or toes, around the knee and in the lower back. Frequently, the first symptom is pain at the site where ligaments and tendons attach to the bone (the inflammation at this location is called enthesitis). Months or years later, other joints may be affected, particularly joints of the spine or sacroiliac (SI) joints – the joints at the base of the spine, where the spine meets the pelvis. At the beginning of the disease, children often have inflamed, swollen joints like the knees and ankles, but in adults, the spine is more likely to be involved. This inflammation can cause permanent damage if left untreated.  Sometimes children with spondyloarthritis develop other symptoms as well. These include fever, psoriasis (a chronic skin rash), other rashes, colitis or Crohn’s disease (inflammation of the intestines), and iritis (inflammation involving the eye). Rare complications may affect the heart, kidneys, or spinal cord. It is also important to know the exact cause is unknown, but genetics do play a key role. Much like in adult-onset spondyloarthropathies, the genetic marker, HLA-B27 is often found in those with JSpa. []

About 20% of people who develop Psoriatic Arthritis will eventually have spinal involvement, which is called psoriatic spondylitis. The inflammation in the spine can lead to complete fusion – as in ankylosing spondylitis – or skip areas where, for example, only the lower back and neck are involved. Those with spinal involvement are most likely to test positive for the HLA-B27 genetic marker. The symptoms of psoriasis include scaly red patches appearing anywhere on the body, but often on the scalp, elbows, knees and lower end of the backbone. In psoriatic arthritis, the skin condition is accompanied by arthritis symptoms:  the scaly patches on the skin caused by psoriasis; pain and swelling in the fingers or toes, sometimes the swelling causing a “sausage” appearance; small indentations, lifting and /or discoloration of the fingernails or toenails; pain and swelling in the joints; pain and stiffness of the spine, especially after prolonged inactivity; inflammatory eye conditions of the eye such as iritis or conjunctivitis which can cause redness, pain, blurred vision and sensitivity to light. []

Reactive Arthritis usually develops 2-4 weeks after the infection. A tendency exists for more severe and long-term disease in patients who do test positive for HLA-B27 as well as those who have a family history of the disease. Symptoms include: pain, swelling and stiffness in the joints including the knees, ankles and feet; skin rashes that commonly appear as thickened red or brown spots, scaling rashes on the palms of the hands or soles of the feet, or a red scaling rash on the penis;  involved fingers and toes that often swell, causing the so-called “sausage digits;” fingernails and toenails which may become thickened and crumble as if infected by fungus; fever and chills; inflammation of the eye (conjunctivitis, uveitis or iritis) that can cause redness, pain, sensitivity to light and skewed vision; enthesopathy – inflammation where the tendon attaches to the bone; inflammation and pain in the lower back or pelvic area; cystitis, which is an inflammation of the bladder or urinary tract, causing frequent urination and a burning sensation when urinating; genital sores appearing on the shaft of the penis or scrotum, or in women, on the external areas of the genitals. These are usually blisters that break open and crust over. Although they heal without scarring, these blisters can be a source of great anxiety in those with ReA. []

Ankylosing spondylitis and related diseases tend to run in families, so there is a genetic factor involved as well. Those who test positive for the HLA-B27 genetic marker are much more likely to have spinal involvement with enteropathic arthritis than those who test negative. Ulcerative colitis and Crohn’s disease are the two types of IBD most commonly associated with enteropathic arthritis in spondylitis. Abdominal pain and bloody diarrhea are the most common symptoms of IBD.  Arthritis symptoms may precede the IBD symptoms. About one in five people with enteropathic arthritis will have inflammatory arthritis in one or more peripheral (limb) joints such as an arm or leg, although the lower limbs are more commonly affected. The severity of the peripheral arthritis normally coincides with the severity of the IBD, thus when diarrhea and abdominal pain are flaring, the peripheral arthritis tends to flare as well.  About one in six people with IBD also has spinal inflammation, although this inflammation is independent of the severity of the bowel disease symptoms. In many, this may just be arthritis in the sacroiliac (SI) joints, but in about five percent of people, the entire spine is involved, as it is in AS.[]

When I was writing this, I kept thinking that I should have a site like Google just for symptoms. It would be like an online search tool for symptoms only, but it wold only be for symptoms~kind of like Web MD’s search tool. The part that would be most interesting is that it would come from me since I’ve actually experienced most of the symptoms myself. It would be like asking me personally~have you had this symptom Dana Morningstar? How did it feel? What did the doctors tell you? What did you do about it? Could you give me some advice? It would be so cool?….Someday in the future I hope…


Ankylosing Spondyilits Symptoms I Have A Few By Meloni

Posted in The Blogs By Meloni, Week 10: Symptoms on September 12, 2011 by Cookie Has A.S.

Anytime you go to the doctor they ask you your symptoms (of whatever you maybe going for). Most of the time, this is a pretty simple question-I mean if you’re running a fever, throat hurts, coughing, head-ache–they could say sinus infection or strep. If your blood work shows something, they can give you a diagnoses.

Well, here’s the thing, when you have ankylosing spondylitis–NOBODY REALLY KNOWS THE EXACT SYMPTOMS! ARGGGGG!

I really have been thinking of this–my symptoms. Can I think back of when I truly think AS started for me. Could it have been at the age of 15? That was my first knee surgery–for arthritis! Could it have been the bad headaches as a child–um–yes, this is a symptom. Was it the 2nd knee surgery? Was it the shoulder surgery? When did the AS “really” start for me? I know when I got to the “advanced stage” was around 5 years ago. The symptoms at that time were ankles that were so swollen and hurting so bad that I could hardly walk. Swollen fingers and wrists that I could hardly dress! Then the lower back–OUCH! That’s when I got the diagnoses of ankylosing spondylitis (AS). And then started on all kinds of medications!

So, several years later what are my symptoms–oh, the same, but add with that severe hip pain, neck pain, and now eye-pain. EVERY PART OF MY BODY! BUT WAIT, let’s not forget the “symptoms” and “risk” from all the medication I’m on. Let’s see liver failure, kidney failure, heart failure, headaches, nausea oh, I could go on and on!

I really just try and NOT think about “symptoms” anymore. Seems there’s always something new and it’s always different! For the most part my constant these days are ankles, wrists, back, neck, eye and hip. Yep, too many so that’s why you can’t “think” about it. Can’t dwell on negative or AS will consume you! I’ve always been one to believe that no matter what it is, you MUST stay positive. My saying has always been, “It is what it is”. I will NOT let the pain/disease take over. If you’re going to live that way, then what’s the point of living. Sure, I have myself a little pity party every now and then, but then I quickly remind myself, there are so many people in this world who are way worse than me!

AS has my body, but NOT me!

My Symptoms Of A.S.(Ankylosing Spondylitis) By Kate

Posted in The Blogs By Kate, Week 10: Symptoms on September 12, 2011 by Cookie Has A.S.

I wish I could say I have little symptoms of AS, or rather minor at any time but in my case I have flare ups quite often and quite severely. The hallmark of AS- neck or spinal pain I have the most often and most every time I wake in the morning along with stiffness. It is the most aggravating of everything I go through and the most painful. I have a tendency to want to physically “adjust” my spine and neck which is very hard to do when stiff and quite painful. Sadly, sometimes I even put off using the restroom until my spine loosens up a little and I feel like my eyeballs are floating! Gross? Maybe but you deal with a stiff spine and trying to manage the restroom as a lady. Not an easy task.

Then there are my eyes. I have been dealing for months with my eye issues. I can’t seem to get them under control and have been on constant steroid drop usage. Those of us with AS tend to have a lot of eye flare ups. I am hoping soon enough my eyes will be doing better. The AS affects everything internally. I can feel it everywhere at various times in my body in various locations during flare ups. Sometimes in my heels real bad, my neck consistently, or my lower back will feel bruised and I want to stick my abdomen out when I walk which probably makes me look 30 pounds heavier than I already am!! My toes have become locking, and what they call trigger joints or trigger toes like you would get trigger fingers. Why this happens I don’t know because I have never ever heard of anyone getting that in their toes but my rheumy understood. At least someone gets it….Lately another oddity of AS, arthritis of the left thumb and I have to wear a thumb stabilizer all day. The top joint in my thumb has been in severe pain. So yea, this sounds like I am complaining but I need you to know AS affects everywhere. EVERYWHERE. (my elbows, my jaw…my chest)

AS can even rip you apart on a good day or a good month and I mean when you aren’t flaring. It tears you apart mentally. Depression rips through your brain and tears you to shreds. It plays with you. It taunts you and teases you. Saying you are better only to have a flare up again and then realize you aren’t good enough for anyone. Or it tells you constantly you aren’t a good person and that you aren’t worthy of being alive. It says you don’t contribute to this world. Depression can be more defeating and daunting than being in physical pain because you cannot get away from it like pain can be gotten away from with a pill or pain can distract you from the depression at times because it is severe.

The symptoms of AS can be frightening for the person suffering and even for the family and friends watching. Or maybe even the one reading about them. Those of us who live with them learn to somehow deal with the physical and emotional pain and symptoms somehow. Some of us can weather the storms of the pain and some of us can’t. Sadly some of us have given up at times and the symptoms have almost done me in too, but these days I refuse to let the symptoms of AS do me in. I am a fighter now and I will continue to be.

Blog for MOW – Symptoms of AS By Jackie

Posted in The Blogs By Jackie, Week 10: Symptoms on September 12, 2011 by Cookie Has A.S.

I could write down a list, how boring would that be? How long would that be? But that would achieve little. Those of us who have AS and have talked to others will have heard them all anyway.

There is also the fact that there are so many symptoms, and we are all so different, perhaps part of the reason for the problems in diagnosis? The main symptoms in common, I suggest, is the lower back pain, especially in the morning, and the extreme fatigue. Both hugely debilitating in our lives and walking like a pregnant duck while one hand holds the small of your back and the other clutches at the wall, is so not a good look! But after that we are all different, and we are different on a day to day basis, which again, I suggest, is why those closest to us find it hard sometimes to understand. They think they have it all figured out and know how to help them something else happens!

It can attack so many places in our body anytime, It can be anywhere front joints to eyes, from feet to neck, from hands to heart,and there is no consistency, no real pattern, there are many many parts of our bodies that can be affected and can hurt and ache and scream with the pain, but we have no idea or control of, when, or indeed, if, that will happen. We can go for years with a certain part of our body unaffected – say neck- and then suddenly find we can’t move it because of the muscle spasms that make us gasp, for weeks we can have physiotherapy, or hot/cold treatment, adjust medication, then one day it is gone! It might never return, it might return on a regular basis, it might just move in and stay put.

It is no wander that those close to us can become confused, but doctors should know better they are trained after all, right?

The rheumatologists have spent years studying diseases like AS right?

They will understand that we are not being troublesome, or awkward, or confused- it is the nature of the disease- right? Right

Now I Know By Cookie

Posted in The Blogs By Cookie, Week 10: Symptoms on September 12, 2011 by Cookie Has A.S.

The subject for our weekly topic is “symptoms.”

Simple enough, Right?

Then why am I on the verge of tears?

Why have I been working on this blog for a week and still can’t find the words I need? I keep getting stuck in a whirlwind of emotions.

I don’t know how to begin….

I don’t know where to start….

I don’t know what to say….

Do I just list the symptoms I’ve had or have?

Do I share the symptoms I’ve never confided to anyone?

Do I share the times I was in a life or death situation because I assumed my symptoms were “just” Ankylosing Spondylitits?

Do I tell how many times I’ve repeated my symptoms over and over; STILL no one listens, maybe they do, but no one HEARS ME?

Do I tell about the doctors who told me my symptoms made no sense, it must all be in my head?

Do I tell about the doctors who “seen”  my symptoms, but had no idea how to help me?

Do I tell about the doctors who acknowledged my symptoms, suggesting that I learn to live with it?

Do I tell about the doctors who were appalled by the symptoms I suffered from but judged me when I was unable to “deal with it?”

Do I tell about the doctor who abandoned me when I needed her the most?

Dr. A was my doctor during my young adulthood. She was a wonderful and kind lady; I felt that I would be her patient till my life ended or hers. I was her patient for twenty-three years and when it became apparent that my “symptoms” (Ankylosing Spondylistis) was going to change my life drastically and challenge her medical knowledge. She decided to do something.

I went in for a visit and was struggling with pneumonia, she sat across from me the same way she had for twenty-three years and said…… I can no longer be your physician. I can not deal with the challenges I (her) will have to face.

I just want to finish my career quietly, and smoothly. I don’t want the responsibility and work that it would require of me to be your physician. What Ankylosing Spondylitis hadn’t managed to destroy of me, she did in that fifteen minute conversation. I told her that I didn’t get this disease on purpose to make her life hard. I told her that I would pray every day for her to be in my shoes at this very moment one time in her life.

Do I share I was forever changed as a human being that day?

Do I confess that nine years later I’m still cautious when sharing my symptoms for fear of being abandoned?

Did you know I can’t tell you which symptoms I have are from Ankylosing Spondylitis or not?

Did you know that my Ankylosing Spondylitis doctor can’t tell me that either?

Did you know that the most devastating symptom I have from Ankylosing Spondylitis is a broken heart?

Did you know fear  is the hardest symptom of Ankylosing Spondylitis I deal with?

Do I share that I asked my family to list the cause of death on my headstone as Ankylosing Spondylitis, because I still want to raise awareness after I am gone?

Now I know why I was in tears. I still feel the pain, shame, hurt, and devastation of every single symptom I ever had and tried to share.

Did you know that it took thirty-two years of tears, begging, screaming and pleading for someone to finally realize I had Ankylosing Spondylitis?

Now I know why writing these blogs is important to me,

because as long as we continue to keep our selves unheard,

Ankylosing Spondylitis will continue to be an invisible disease.

Dedicated to The ASer’s

Who Walked Before Be

Who Walk Beside Me

Who Will Walk After Me.

Ankylosing Spondylitis Symptoms By Jeannette

Posted in The Blogs By Jeannette, Week 10: Symptoms on September 12, 2011 by Cookie Has A.S.

Symptoms of Ankylosing Spondylitis and its Many Sister Diseases

I find this topic particularly difficult to write about today as I’ve lost most of my hair and nails in the past few weeks. I typically keep a hopeful, positive attitude and only allow myself the rare pity party. Fifteen minutes to cry and then I pull myself up by the bootstraps, name my blessings, and say a prayer of thanks to my creator.

There are so many symptoms! Where to begin? Some are mild one day and severe the next, but they’re always present at some level. My first symptoms started at age 2 with chronic inflammation of the lungs in addition to allergic asthma. Each time we moved to a new state I was subjected to the scratch and needle allergy tests (which was often), and I experienced severe reactions to every allergen introduced in testing. Next I experienced skin problems such as psoriasis and eczema. Joint pain began around the age of 16. It began with my hands and knees first and escalated to my lower back. Jaw pain was quick to follow. Severe jaw inflammation that left my face swollen and jaw locked … at the most inconvenient times … such as kissing a boy. I jest not, but I can’t help but laugh.

When I was attending college full time and working full time, really pushing myself, the joint pain went up many levels. Countless hours on the computer and using my hands for graphic design and sign language made the pain often feel unbearable. I believed I was entirely too young to have arthritis so I ignored the fact that it ran rampant on my mom’s side of the family while multiple sclerosis was on my dad’s side of the family.

When nerve problems and muscle weakness arose it was the first time I truly became worried. Not long afterwards neck and shoulder pain developed to the point that I could barely hold up my head. I couldn’t even hold the phone up to my ear. On the days that I could function to some degree the tremors were still severe and I joked with my co-workers that it was alcohol withdrawal, and I WAS drinking too much. It was an easy choice of pain killer in the evening before bed. My eyes grew redder by the day and once again I made a joke out of it and stated that I should cut back on the weed, even though I didn’t smoke weed (back then). Bruises appeared all over my body (vasculitis) and I joked that I was simply a klutz and would be just fine if I’d stop running into things. Muscle spasms became so severe that I’d suddenly jerk a cup of coffee all over myself, and I began to have trouble with my words. I once again joked that I must have turrets syndrome. Soon my eyes hemorrhaged causing many “specs” to appear in my eyesight overnight. I found that I couldn’t focus my eyes. My aqua eyes turned to black saucers for nearly 2 weeks, dilated on their own because of muscle weakness. Cognitive function became a definite problem. It was at this point that my doc sent me to a neurologist who ordered three different  MRI’s, 4 nerve conduction velocity tests (NCV), and 2 needle electromyography tests. I call them shock and needle tests, and they freakin’ hurt. This was the beginning of many diagnoses including heart disease and hearing loss from mixed connective tissue disease. I was left in a state of disbelief. All of this occurred concurrently with my dad’s diagnosis of cancer and my mom’s relapse into severe mental illness … easily the most difficult year of my life. Stress was a huge trigger factor along with 2 spider bites and 4 wasp stings within the time period of a couple of months.

Five years later I’m still alive and kicking. I could go on and on about the seemingly countless symptoms, but I won’t. It brings me down to think about them, and I believe in the power of the mind and spirit, so I’ll end with the one symptom that I believe is the most important sign. Extreme fatigue. There are many causes of excessive fatigue and none of them should be ignored. It’s your body giving you a loud and clear signal that something is very wrong. One of the many things I’ve learned over the past few years …

Listen To Your Body!