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Today is Chronic Fatigue Syndrome & Fibromyalgia Awareness Day…
Today is both Fibromyalgia & Chronic Fatigue Syndrome (CFIDS/CFS/ME/MCS) Awareness Day. The purpose of awareness days is to educate, draw attention, dispel myths and to offer support to those who battle these conditions each day of their lives. The Positive Pear provides information on these conditions as well as, methods for living with & coping with these invisible chronic illness positively, naturally & holistically. Sending many healing hugs & amazing positive energy to all who are battling these chronic conditions. Remember it is possible to live Chronically, Healthy, Happy, Fit & Fab!!
Why Should I Be Positive When I Have Every Right To Be Negative?
I’ve considered writing about this topic in many different ways over the past few months. I’ve started a few drafts, yet I struggled a bit with the most appropriate way to approach this subject. I desire to help others understand the importance of having a positive mental attitude while fighting chronic health conditions, without inadvertently trivializing anyone’s emotional or physical pain. I’ve also sat back and observed and I can’t help but notice the amount of negativity that comes from people who are physically suffering. When I’ve chimed in with my messages of hope and sunshine, I’ve been asked if I even know what its like to live with chronic pain or chronic illness. I initially found this surprising, then realized by the many negative comments and private conversations, that many feel they must appear downtrodden to be taken seriously. After all, living with chronic illness can often mean their conditions are also invisible to the naked eye and because these conditions are also difficult to diagnose, they’ve had much to endure. This showed me the great need for positivity within this group who are living with Invisible Chronic Illness and I set out to share my positive message.
By the way, the answer to that question is yes, I do know what its like to live with invisible chronic illness, as I’ve lived with two chronic conditions since childhood and another that I developed after a horrible car accident a few years back. I have Ankylosing Spondylitis, Fibromyalgia and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Like most of my fellow sufferers I look fine, and because of my positive and very hopeful outlook on life, on the surface I might also act fine. I’m an eternal optimist and in spite of my difficulties and physical challenges, I’m the type of person who is most likely to see the glass half full, rather than half empty.
Why is this? When like most of you I’ve lived with symptoms of chronic invisible illness for many years, going undiagnosed or being misdiagnosed. I’ve also had my symptoms trivialized or blatantly disregarded by numerous doctors. I’ve had “friends” incapable of understanding why I would have bouts of spontaneous swelling or why I was physically debilitated for 8 months, using a cane & crutches without a single diagnosis. As a teen my mother would tell me that I was being lazy and would force me out of bed at 2am to wash dishes that I couldn’t get to because of fatigue, during what I know now to be AS & CFIDS flares. My mom would also suggest that I was far too young to be tired all of the time and that I needed to “snap” myself out of it. As my conditions progressed, I can recall my husband asking how long I’d plan to be sick, when it came to cooking and cleaning the house, as he sat and watched football. I’m sure that if I asked each of you to list below your many encounters with insensitive people, doctors, friends, strangers, or family members, that the comment section would be full. However, I know the effects of dwelling on the negative and as I recall these situations, I can still tap into the awful feelings that I’d experienced at those precise moments. I also know that as easily as I can focus on the negative, I can also think of many positive situations in my life to draw upon. I can name 20 very supportive friends, at least one doctor who finally listened to me, leading to a correct diagnosis. I can think of a phone conversation with my mom, as I explained the spontaneous swelling that I’d experienced as a child, was the result of AS and the debilitating fatigue I’d also lived with since childhood, was due to Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS/CFS. My husband has since taken over the cooking and cleaning, as I now sit and watch the occasional football game. My friends and family are now my biggest supporters, and I do not harbor resentment toward them because they did not understand invisible chronic Illness. I didn’t even understand it myself and I’d lived with (3) of these conditions for most of my life. I’ve also found great healing in forgiveness and not so much of others, but of myself. Letting go of much of the guilt that comes from being chronically ill. Allowing myself to mourn the loss of the former me and embracing all of who I am today.
Through knowledge I empower myself. I also posses an inner strength and a sense of joy that absolutely no one can steal from me. As my own health advocate I walk into a doctor’s office and I can say with great confidence that I’m looking for someone to partner with me in my health care. I want a doctor who is more knowledgeable about my conditions than I am and sensitive to my needs as a patient and when they are neither, I fire them. That’s right fire them! I recently “fired” my primary care physician after 8 years and I used the term “fired” because Its empowering. She had not been at all helpful in identifying any of the (3) chronic conditions that I have, because she continually trivialized or ignored my symptoms. I even had to demand appointments with specialist, because she would never refer me on her own. On one occasion dragging myself to an Infectious Disease Specialist, simply to prove that I did not have Lyme Disease. However, I had to sever ties, when she blatantly lied about finding a lump in my breast preventing me from receiving the type of mammogram that I needed. I felt this was an attempt on her part to hide her lack of cooperation with me on my many mammogram requests in the past. Now faced with a rather large lump she could have been exposed or worse liable. It was obvious to me that her reputation was of far more importance to her than my health, so, I “fired” her! I asked for a meeting with her boss, which I received, where he apologized on behalf of his department and proceeded to order the mammogram and ultrasound that I needed.
Even from this situation I can find a positive. I’ve gained even more confidence to stand up for myself as a patient. I can share my experiences with others, so that they too can the find their inner strength. I am not a victim of chronic illness and neither are you. As a result, I do not allow the autoimmune disease that I have or the two other invisible illnesses take control of my thinking or to define who I am. I choose to navigate through life with a positive mental attitude and so can you. because it is a choice. I also find great strength in controlling things that are within my ability to control. I exercise daily, I eat healthy, healing foods, I take natural herbs and supplements to give me energy and to help with managing the multitude of symptoms that I encounter. Knowing that stress is a symptom trigger, I keep my stress levels low by resting when needed, meditating, practicing yoga, making sure that I have some “me” time and by being grateful and truly appreciative for all that is right in my life. Being positive does not come at the risk of ignoring the emotional, mental or physical pain, the bad moments in life or the negative situations that we encounter. Life is full of those. Feel free to face those head on, cope with them, feel the anger and the frustration and be ready to stand up for yourself when needed. What’s most important about the negative things that we encounter in our lives, is not the fact that we encounter them, it is how we recover from them and its easiest when we do not allow these moments to consume us, instead allowing ourselves to learn, grow and move on.
Without question each day brings its own challenges, especially when living with chronic pain & invisible chronic illness, but we do have a choice when it comes to being negative ~vs~ being positive. Deciding to have a positive mental attitude not only empowers us, but it gives us the opportunity to see the wonderful things that each day brings.
Another TPP article giving us the why’s and how to’s: “Being Positive when Living with a Chronic Illness”
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.
