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Hello 2012 & Hello to Coping with Ankylosing Spondylitis, Fibromyalgia & CFIDS!

Since I’ve lived with the physical symptoms of Invisible Illness for many years, 2012 is really about coping emotionally and mentally with the idea of living with more than one.

I was devastated upon discovering that I have a chronic pain condition known as Fibromyalgia, along with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).  In addition to overwhelming anger, frustration and a sense of loss. Realizing that it was now highly unlikely that I would return to being my old self again.  The person who was healthy, vibrant, full of life, strong and athletic.  I think that most people would be thrilled to finally have a name for conditions that plagued them for many years, but for me I have been there and done that.  Nearly 8 years ago, I was ecstatic to discover the name for the chronic inflammatory condition which had plagued me since childhood, Ankylosing Spondylylitis. I felt relieved to finally know and to have a course of treatment.  However that excitement was short-lived, because I had no way of knowing that a long time acquaintance, but newly found friends Fibro & CFIDS would sneak in to steal my joy.

The Fibro & CFIDS diagnoses did not yield the same excitement, because I’d been waiting out what I thought was a long bout with active AS, hoping that it would go back into remission as it had in previous years and I would quickly return to being my old self.  Its quite interesting what keeps you going and when you no longer have that small bit of hope to hold on to, it can be quite devastating.  Awareness is crucial, because upon realizing that the many symptoms, even things that I didn’t realize were symptoms, that I”d lived with for as long as I can remember were not in fact normal, I could easily trace fibro & CFIDS back to my teens. Only a few short years after my first AS flare.  However, as with my AS the Fibro & CFIDS symptoms had gone into remission several times.

Denial has no place in chronic illness, as I recall a conversation with my Rheumatologist several years ago. It was exactly 1 year after being officially diagnosed with AS, discovering NSAIDs, exercising several days a week, eating well and being in a very good place  both mentally & physically.  I was unfortunately in a terrible car accident, which totaled my car leaving me with a concussion, severe case of sacroiliitis, an arm that I could barely use and severe, chronic hip, neck & back pain.  A car accident is your worst fear as an AS patient, because of the risk of exacerbating your AS symptoms.  Shortly after the car accident, I lived with chronic musculoskeletal pain that NSAIDs were no longer helping, along with severe fatigue and stomach upset (IBS), my Rheumy told me that it sounded as if I might be developing Fibromyalgia. However, I had no knowledge of Fibro at the time, so I could not agree or disagree, on weather or not I felt that my symptoms were a match. I was also in a bit of denial and did not want to take on managing another chronic illness. My Rheumy further stated that it was not uncommon for AS patients to go on to develop Fibro and especially after experiencing trauma, such as my recent car accident, and this was more than likely a conversation that we would continue during future visits. Unfortunately, my Rheumy passed away, so there were no future conversations. If only I’d been aware that the multitude of symptoms that I’d lived with for many years, were related to one another and related to both Fibro & CFIDS I would have had my answers much sooner.

Honing in on my chronic and incredibly debilitating fatigue is what finally began to give me answers.  I’d also been coping with being cognitively challenged for many years, long before the car accident,  but during the last 9 years many of my symptoms were getting worse.  Old symptoms were returning like migraines and tension headaches, while others symptoms were bringing no relief, such as the severe neck and back pain, muscle spasms, food intolerance & chronic pain in other areas of my body. It was only very recently that I myself began to connect the dots.  After much research,  I could see that they were many overlapping symptoms, AS overlapped with Fibro, Fibro overlapped with CFIDS and so on. I could also see that I had symptoms relating to hypothyroidism, due to unexplained weight gain, cold intolerance, dizziness, fatigue, etc and due to the progression of what I now know to be Fibromyalgia & Chronic Fatigue and Immune Dysfunction Syndrome, I also discovered that I had IBS which was aggravated by diet, food intolerance and stress.  My monthly cycles were also unbearable (since my teens), while many symptoms of both Fibro & CFIDS were in full effect. (the entire list below)

I’ve always been a very private person, even refraining from sharing some of my symptoms with my doctors and honestly I never thought tell my Rheumy that I had insomnia, cognitive dysfunction, anxiety & stress, nor did he ever ask.   I’ve only recently begin speaking publicly regarding my health issues and many who’ve known me for years, were very surprised that I had a condition and others who I’d confided in were surprised that I began to share.  I found that writing about having Ankylosing Spondylitis proved to be incredibly therapeutic. Once I began sharing my AS symptoms publicly, I began to realize that many of my symptoms where not AS related at all.  Though a few AS symptoms do indeed overlap with Fibromyalgia & CFIDS , these are ugly chronic conditions all their own. It took many years to arrive here, discovering that CFIDS needed to be addressed by an Internal Medicine Physician, while Fibro needed a diagnoses from not just any Rhumatologist, but one very knowledgeable about and experienced with Fibromyalgia. It also helped that I could clearly articulate my symptoms, while understanding how they overlap and how they differ:

My Symptoms of Fibromyalgia :

Profound, Chronic & Widespread Pain

Stabbing/Shoot Pain/Deep Muscular Aching, Muscle Spasms, Throbbing & Twitching

(Nerological) Numbness, Tingling & Burning

Symptoms Aggravated by Cold/Humid Weather

Non-Restorative Sleep

Physical & Mental fatigue following excessive physical activity/Physical inactivity

Reduced tolerance to exercise & Muscle pain after exercise

Fatigue, profound exhaustion & poor stamina

Sleep disturbance/ Stage 4 deep sleep/interrupted by bursts of awake-like brain activity

Fibromyalgia & CFIDS/CFS Overlapping Symptoms::

Dizziness/Lightheadedness/Vertigo (Hypoglycemia)

Migraines & tension headaches

Vision Problems/Visual blurring

(Parasthesias) Numbness & Tingling face, arms, hands, legs and feet

Sleep Disturbance/Insomnia

Not feeling rested upon waking

IBS (abdominal pain,  gas, bloating, nausea, constipation/diarrhea)

(Nocturia) Bladder disturbance (overactive/irritable)

Cognitive dysfunction Impaired Memory & Concentration (Brain-Fog *Fibro Fog)

Anxiety/Stress/Depression/Panic Attacks

Impaired Coordination

Skin sensitivities/Outbreaks/Rashes

Dry Eyes/mouth

Ringing in the ears (Tinnitus)

Worsening of symptoms due to extremes in temperature

Restless Leg Syndrome/Leg Cramps

My Symptoms of Chronic Fatigue and Immune Dysfunction Syndrome CFS/CFIDS/ME:

Relapsing & Debilitating Chronic Fatigue

Weight Gain/Hypothyroidism

Extremely painful menstrual cramps

Allergies & Sensitivities to chemicals & medications

Sensitivity/Intolerance to: noise/sound, odors, bright lights, foods & cold

Multiple sensitivities to medicines, foods, and chemicals

Tender lymph nodes in the neck & underarm area

Dyspnea (labored breathing or hunger for air) on exertion

Frequent Flu like symptoms

Chest pain, Nausea & Cough

Frequent sore throats

Frequent canker sores

Alcohol Intolerance

Night Sweats

Low-grade fever

Low body temperature

Tachycardia/Palpitations (rapid heart beat)

Personality changes & mood swings

Swelling or the feeling of swelling in hands & feet

Tightness & weakness in the limbs

Joint Stiffness

Muscle & Joint Pain without redness or swelling

Fibromyalgia, CFIDS/CFS & Ankylosing Spondylitis Overlapping Symptoms:

Chronic Fatigue

Musculoskeletal pain

Joint stiffness

Glute, Neck & Back pain

My Symptoms of Ankylosing Spondylitis :

Chronic Fatigue

Muscle & Joint Pain

Pain & Stiffness of spine & joints

Chronic Inflammation, neck, back, knees, ankles, heels, hips & chest wall

Sacroiliitis

Plantar Fasciitis

Photophobia

Potentially HLA-B27 Related IBS

Other Related/Unrelated Conditions that I have:

Hypermobility syndrome (potentially unrelated but suspected to be linked to AS)

When thinking back on when I discovered that I had AS, the feeling was similar to a long walk in an open plain, with daisies, great music, skipping and fun dancing.  When discovering that I had Fibromyalgia it was more like those scenes in the movies where the main character is walking around, interacting with the world around him, only to discover at the end of the movie that he’s really dead. What’s worse is that he appears to be the only one who didn’t know.  I’ve obviously seen far too many of these movies, because this is what continually flashed repeatedly through my mind, Bruce Willis in “The Sixth Sense,” Anne Hathaway in “Passengers” and Nicole Kidman in “The Others.”  As all of the clues relating to their demise, which we of course miss throughout the movie, now flash through their minds and on the screen.   This is precisely how I felt, I missed the clues about having Fibromyalgia & CFIDS and there were many, but at least now I know and I can continue to move forward.  I will however mourn the loss of my former self, while also mourning the loss of my Rheumatologist. As it is difficult traveling my Fibro & CFIDS journey without him, my doc and my friend.  It’s also difficult to imagine my life without the old me.  This is solely a mental adjustment, because I have not been my old physical self in quite sometime, but in 2012 I will gladly step up to the challenge of reinventing myself.  I am an eternal optimist, I will inevitably make lemonade out of this proverbial Fibro & CFIDS lemon and I will continue to advocate & share my natural, holistic and healthy approach to living with Fibro & CFIDS and subsequent progress as I do with my AS. Through my own very unique journey, I’ve learned that having an  invisible chronic illness, or two or three, though incredibly challenging is not at all a death sentence, but another way of living life.  Here’s to an amazing 2012, where we will continue living “Chronically Happy, Healthy, Fit & Fab” while coping with Ankylosing Spondylitis, Fibromyalgia & Chronic Fatigue and Immune Dysfunction Syndrome CFIDS.

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