World A.S. Day is today May 4, 2013. The goal is to help draw awareness to Ankylosing Spondylitis which is a physically debilitating disease affecting over 2 million men, women & children. In spite of chronic pain, crippling symptoms & incredible discomfort, many thrive while living with this autoimmune disease. The Positive Pear offers comfort, support and helpful tools one would need to continue thriving while living with A.S. Sending love & hugs to all those thriving & surviving!! ♥ Read more about Ankylosing Spondylitis: http://thepositivepear.com/invisible-chronic-illness/ankylosing-spondylitis/
If you or someone you know suffers from a invisible chronic illness you may not always know exactly what to say, or you might be surrounded by friends and family members who may not always have the perfect words to encourage you, though they love and support you. I not only suffer from autoimmune disease and other chronic conditions, but I know of others who battle invisible chronic illness well. There are times when I feel that I know precisely what to say because I’m a fellow sufferer, but there are also times when I’d simply prefer to just give these friends a huge hug to let them know that everything will be OK. I also envision these hugs being powerful in their healing abilities, thus rejuvenating my friends and family members who suffer, so for one brief moment they’re able to put the symptoms of their physical ailments aside to deal with other matters of life which also need their attention.
I began to ponder how I could reflect the impact of such a hug in words, especially since many of my friends are in other parts of the country and in other parts of the world. This is when I came up with “The Holistic Healing Hug” holistic meaning “whole body wellness” combined with a hug that heals….a perfect combination. To my surprise my family was not only excited that I’d come up with this idea, but they also seemed relived to have something prepared to give me when they felt compelled. My daughter printed out “The Holistic Healing Hug” and put it on the wall of my office and at that point I knew just how powerful these words could be for others out there who also have loved ones who battle invisible chronic illness, so I’m sharing “The Holistic Healing Hug” with all of you. Please feel free to share this post or the picture with anyone you know who could use a “whole body wellness” healing hug to support them in a day of managing their chronic invisible illness. Lots of Love & Many Healing Hugs to You!!
For You My Friend….The Holistic Healing Hug
“I’m giving you this healing hug in hopes that it will sustain and support you through your day. Though it can not actually heal you, perhaps it can reinvigorate you while allowing peace to flow through you. Giving you the opportunity to mend that which is broken, while enabling you to harness the rejuvenating power which dwells within you. May you feel loved & supported by all around you through the embrace of this holistic healing hug.”
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I’m a health, wellness and fitness professional & blogger. I also live with a form of autoimmune arthritis known as Ankylosing Spondylitis, as well as Fibromyalgia & Chronic Fatigue Syndrome & Immune Dysfunction Syndrome. I blog about how to navigate the symptoms of these conditions naturally and holistically, while also maintaining a positive mental attitude. I created The Positive Pear as a resource, where it’s my philosophy that we can be “Chroncially happy, healthy, fit & fab” in spite of living with Invisible Chronic Illness.
“Being Positive when Living with a Chronic Illness” has it’s own meaning for everyone. To many who are sick it’s a way of trivializing their suffering and to a small minority it’s this wonderful, peaceful state of mind that requires being completely oblivious to the realities of life. What does it mean to you? Being positive does not come at the risk of ignoring the realities of life, while pretending to be happy. It’s really about being as positive as possible in light of the circumstance, and that gives us the motivation and the ability to enjoy all that we can. I am an eternal optimist, I will always see the class have full and I will always find the positive side to any situation, but I am also a realist. Naturally “being positive” does involve” some degree of happy thoughts and smiling faces but that’s certainly not all. Being positive is a state of mind accompanied by appropriate action. Which if taken at the appropriate time will take us in the direction that we need to go.
I started the “The Positive Pear because I saw the need to encourage a positive mental attitude among people who suffer from invisible chronic illness, and more specifically auto-immune arthritis and aside from saying “be positive” I wanted to define exactly that meant to people who are battling chronic health conditions. While also providing effective tools, to help with achieving this goal. Those who live with chronic illness do not need permission or help with negativity. It’s a natural state of mind that we can easily gravitate towards, when we’re suffering. However people do need permission, encouragement and direction in terms of how to being positive. Sufferers need to know that it’s ok to smile, be happy and enjoy life without the risk of trivializing their own suffering. They need to know that it is not a requirement to appear downtrodden to be taken seriously.
“The seed of suffering in you may be strong, but don’t wait until you have no more suffering before allowing yourself to be happy.” ~Thich Nhat Hanh~
When I was asked by Tiffany Westrich, founder/CEO of the International Autoimmune Arthritis Movement (IAAM) & WAAD Event Coordinator, to host a the chat ”Being Positive when Living with a Chronic Illness” I was honored and very excited to have the opportunity to discuss a subject that I enjoy immensely. I also knew that I had my work cut out for me, because this is not an easy subject to tackle with people who are in pain. I thought I’d start by addressing a few misconceptions relating to being positive and living with invisible chronic illness by counteracting these misconceptions with a few truths.
Misconception #1) In order to appear positive I need to smile, be fake and pretend to be happy all of the time:
Ok, let’s be real here, whose happy, or feels like smiling all of the time & who benefits from “fake” positivisty?? Absolutely no one. Though I’m often happy and I do happen to smile a lot, there are days when I simply do not have it in me. Some days you will not have it in you and that’s perfectly acceptable. We have to look at life realistically and accept ourselves for who are, where we are in our lives and how we truly feel. We are wonderful people who happen to be afflicted with a chronic illness. We have both good days and bad days and sometimes we feel wonderful and there are many times when we do not. Self Acceptance is important one of the very first steps to being positive. If we have unreasonable expectations of ourselves, then it becomes very difficult for us to be happy and when we’re unhappy we can not be positive.
Misconception #2) I can’t complain, nor can I speak openly and honestly about how my chronic illness affects me:
This is a very common misconception. I think the mistake that many of us make is not establishing the proper support systems. We attempt to talk about chronic illness and our symptoms with people who do not understand and have no way of knowing what we’re going through, so they can not provide the proper encouragement that we need. As a result they inadvertently trivialize our suffering. If we can not find people within our families or within our communities, we have wonderful online communities filled with people who can understand what we’re experiencing. Sometimes you need to complain, other times you need to cry and it’s during these times that you truly need someone who will be there for you without judgement. We also want to make sure that within our support systems that we have people who are truly supportive. If needed, we have the right to remove toxic, negative people from our lives. Remember “Once You Remove Negative People Positive Ones Appear” & Be Positive & Surround Yourself with Positive People. If you haven’t already, begin the process of establishing a good support system.
Misconception #3) Being positive means I must ignore the bad things that happen in life:
Another common misconception. As we roll with the ebb and flow of life it isn’t hard to miss that bad things sometimes happen. Additionally, misunderstandings, disagreements and conflict also happen just like eating, sleeping and breathing. However, how we handle the bad things that we encounter is what truly matters. We must keep in mind our physical challenges and the impact that stress has on our symptoms and we’ll need to approach situation accordingly. It is important to deal with whatever comes our way. If we’re upset, sad or even angry. It is important to acknowledge how we’re truly feeling, why we’re having such feelings and the best way of coping with these feelings. Seek resolution, by addressing issues if and when needed, or by ignoring them if appropriate. Most importantly being prepared to move on once an issue is resolved. Harboring anger resentment or ill feelings do not benefit us. Being positive does not come at the risk of ignoring one’s own feelings even the bad things in life. However, we can not remain in this “bad” place. We deal with our rough patch, pick ourselves up, dust ourselves off and forge ahead! During these challenging times, I like to refer to a poem entitled “Don’t Quit” “When things go wrong, as they sometimes will” read it & refer to it, because it serves as a nice reminder.
“People have a hard time letting go of their suffering. Out of a fear of the unknown, they prefer suffering that is familiar.” ~Thich Nhat Hanh~
If “being positive” is none of misconceptions that we’ve discussed, then what is it? Being positive while fighting chronic illness means having a positive mental attitude, inner and outer strength, peace, contentment, wellness and ultimately happiness. After all, in spite of battling chronic invisible illness we also deserve happiness. Be willing to let go of some of the self limiting belief systems and open yourself up to other possibilities. What are the best ways in which we can achieve a positive way of thinking? I’ve separated these methods into (4) categories. Giving us the opportunity to briefly discuss the impact that adapting these methods will have on our frame of mind, health, well-being and over all attitude.
1) Brain Food: “All that we are is the result of what we have thought. The mind is everything. What we think we become.” ~Buddha~ What we feed our minds is just an important as what we feed our bodies. Feeding our brains positivity and encouragement while help us to feel both positive and encouraged. This is why you’ll find beautiful picture with inspirational messages in many of the posts on “The Positive Pear”. I think we need constant reminders, because we have the distraction of our symptoms to contend with. We also want to surround ourselves with positive people who can reinforce the type of thinking that we like to have. Just as we’d surround ourselves with successful people, if we were striving for success. Also having reasonable expectation of ourselves, while accepting ourselves for who we truly are and where we are in our in our lives. May is Mental Health month and a reminder to those of us who suffer from physical conditions. We must be mindful of the impact that our conditions have on our mental and emotional health as well. Keeping an eye out for symptoms of depression, stress and anxiety. Educating ourselves about our conditions, all of it’s symptoms and the appropriate treatment and all treatment alternatives not just medications.
2) Healthy Nutrition: Our bodies are working to hard to function as they should, in spite of having compromised immune systems and numerous symptoms. It is important to feed our bodies whole food nutrition and “real food” (chemical-free) focusing on anti-inflammatory foods such as fruit and vegetables, drinking ample water and eat healthy protein. While reducing simple carbohydrates such as: cakes, cookies, pizza, pasta excessive amounts of sugar and completely avoiding processed foods. When eating carbohydrates make sure they are complex carbohydrates, such as those found in fruit, vegetables and whole grains. A good rule of thumb, when “eating for healing” is that if you can’t grow it, then you probably shouldn’t eat it. Though that only roughly covers it:) Have you considered juicing? It’s a wonderful way of getting massive amounts of anti-inflammatory greens into our system without reeking havoc on the digestion system. (check out TPP’s Organic Juicing section) Additionally we want to limit our chemical exposure such as insecticides and pesticides, by buying organic whenever possible and keeping a good fruit & organic/chemical free fruit/veggie cleaner on hand. We also want to avoid GMO foods where the DNA of the food has been altered to grow these precise chemicals within the foods themselves. What we feed our bodies is incredibly important when battling invisible chronic illness, because we use food as fuel and what we put into our bodies can exacerbate or symptoms. We want good fuel, because we want to feel good as often as possible.
3) Exercise: Exercise is crucial to all, especially those of us who suffer from chronic illness. Staying fit can even help us to manage certain symptoms, such as depression, stiffness and chronic pain. What are some exercises that are helpful? For Autoimmune Arthritis Sufferers, strength training is incredibly important, because strong muscles relieve stress on the joints. Yoga is a wonderful way of maintaining flexibility, detoxifying the body, and fighting depression. Dance-Fitness such as Zumba, Salsa, Hip Hop Cardio, Hula Hopping are typically low-impact, incredibly fun and a wonderful way to sneak in weekly cardiovascular exercise without feeling like you’re working out. Also Swimming, Pool Aerobics, Biking, Hiking & lastly Walking which is something that everyone can do and it’s something that you can incorporate into a weekly fitness routine. Exercise reduces stress, allows us to maintain our mobility and it also releases endorphin’s which helps to regulate the pain centers in the brain.
4) Symptom Management: Using a well-balanced approach to managing our disease and chronic conditions is incredibly helpful. Eating well, getting proper amounts of rest and reducing your stress levels are incredibly important in reducing symptoms such as flares. Using healing methods such as exercise, yoga and meditation, natural and alternative therapies such as acupuncture, massage, TENS, MENS, chiropractic treatment (for those without musculoskeletal conditions) herbal supplements, food based supplements such as protein powders which are high in amino acids can be a great way to supplement current treatment methods. Though this falls more under “brain food” educating yourself about your medications and all potential side effects and making changes if needed is also helpful for symptom management. Is your condition something that can be managed naturally and holistically? Consider it as an option and if not, further consider adding a few of these alternative therapies & unique healing elements to your overall care.
Brain Food, Exercise, Healthy Nutrition, Symptom Management are (4) of the key areas to helping us in working toward balance. Being balanced is crucial to achieving and maintaining a positive mental attitude and our positive mental attitude allows us to maintain our hopeful outlook on life. Thank you for taking the time to read this post on how to “Be Positive When Living with a Chronic Illness” and thank to those of you who also joined us for the WADD “World Autoimmune Arthritis Day” Live Chat hosted by The Positive Pear. It is without question, very possible to live “Chronically Happy, Healthy, Fit & Fab” in spite of battling chronic invisible illness.
“I am still determined to be cheerful and happy in whatever situation I may be, for I’ve learned from experience that the greater part of our happiness or misery depends on our dispositions and not on our circumstances.” First Lady ~Martha Washignton~
(All rights reserved. Please feel free to share this article in its entirety, excerpts or links provided full & clear credit is given to The Positive Pear Blog)
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!!
May is mental health awareness month. Our mental health is an aspect of invisible chronic illness that we can easily overlook, because we’re busy focusing on the pain, discomfort or numerous other symptoms that accompany our autoimmune disease or chronic conditions. We must keep in mind the importance of paying close attention to our mental and emotional health, as well as our physical well-being. Depression is not only a symptom of conditions which affect the brain, such as Fibromyalgia and Chronic Fatigue Syndrome, or a symptom of conditions that affect mobility such as autoimmune arthritis, it’s also one of the leading causes of disability effecting approximately 120 million people worldwide. Being able to recognize the signs of depression and having a well established support system is incredibly important. Symptoms of depression include: anxiety, persistent sadness and hopelessness, loneliness, sense of loss, withdrawal from friends & loved ones, isolation, loss of interest in activities, enjoyment, feelings of guilt, low self-worth, sleep disturbance, disruption in appetite, low energy, and poor concentration. There are ways in which we can manage our own symptoms of mild depression and these methods also work with antidepressants and anti-anxiety medications. Such as exercise, yoga, meditation, lifestyle management, stress management, balanced whole-food nutrition, and nutritional & herbal supplements. Within our support systems it is incredibly important to also include a mental health professional who is capable of easily recognizing when depression exceeds our ability to self manage, in which case medication or psychotherapy might be needed.
It’s hard to believe that this awareness effort has been underway since 1949, especially since mental illness was incredibly taboo until recent years. We are so fortunate to live in society where advocacy is alive and well. Education is at our finger tips and we can openly discuss invisible chronic illness in all of its forms. Along with Depression & Major Depression also known as Major Depressive Disorder (MDD) & clinical depression, there are numerous other mental disorders which fall into the category of mental health and require awareness such as: ADHD, Generalized Anxiety Disorder GAD, Panic Disorder, Eating Disorders, Asperger’s Syndrome, Autism, Bipolar Disorder, Conduct Disorder, Borderline Personality Disorder (BPD), Dissociative Disorders, Obsessive-compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD), Phobia, Reactive Attachment Disorder, Post-traumatic Stress Disorder (PTSD), Schizophrenia, Self-injuring Behaviors, Social Phobia and Tourette Syndrome.
1st week in May is National Children’s Mental Health Awareness Week
The entire month of May is Mental Health Awareness Month
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”
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
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::
Migraines & tension headaches
Vision Problems/Visual blurring
(Parasthesias) Numbness & Tingling face, arms, hands, legs and feet
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)
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
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
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
Muscle & Joint Pain without redness or swelling
Fibromyalgia, CFIDS/CFS & Ankylosing Spondylitis Overlapping Symptoms:
Glute, Neck & Back pain
My Symptoms of Ankylosing Spondylitis :
Muscle & Joint Pain
Pain & Stiffness of spine & joints
Chronic Inflammation, neck, back, knees, ankles, heels, hips & chest wall
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.
Controlling your anxiety and stress levels might be helpful in controlling inflammation, as well as ward off aging related chronic illnesses. When we are in a constant state of worry relating to daily life such as work, school, finances, family etc; our bodies begin to recognize this continued exposure as a threat. Thus Immediately activating the stress response by switching the body’s systems to “fight or flight” mode, a physiological response normally reserved for dangerous situations. The hypothalamus gland in the brain sets the response in motion by triggering the nervous system, which in turn alerts the adrenal glands to release a huge surge of stress hormones known as epinephrine (adrenaline), norepinephrine (noradrenaline) and cortisol directly into the bloodstream which causes several physical changes in the body. Including increasing the heart rate, elevating blood pressure and boosting our energy supply. Cortisol the primary stress hormone, also increases our levels of glucose in the bloodstream and enhances the brain’s use of glucose, which allows us to think faster to plan an escape. The release of cortisol also minimizes the use of crucial functions of the body. Functions such as the immune system, digestive system and reproductive system, rendering them temporarily useless, which would allow us to flee a truly dangerous situation much more quickly. Because several areas of the brain are alerted, this physiological state also effects our mood among other things. In a real life emergency these responses would be beneficial, but imagine what’s happening to the body each time you are under mental, physical or emotional stress. Being exposed frequently to stressful situations creates a constant release of these hormones and over long periods of time can be incredibly be harmful to the immune system.
In a real “fight or flight” situation the body completely returns to normal after the perceived threat has been removed. Stress hormone levels decrease, cortisol levels drop, heart rate returns to normal, blood pressure returns to its original level and body functions such as, the immune, digestive and reproduction systems resume their normal routines. However, with the continued exposure to stress, the body remains in constant “fight or flight” mode with the inability to regulate itself. The continued release of these stress hormones can lead to an impaired immune system. Thus breaking down the body’s ability to discern allies from helpers. As a result, the body begins to view everything as a threat causing immune malfunctions such as chronic inflammation. Which is the number one contributing factor to aging related diseases and major symptoms and conditions such as allergies, chronic headaches, obesity, diabetes, adrenal fatigue, autoimmune diseases, hypertension, heart disease, strokes, insomnia, digestive issues, depression and memory impairment. It can also trigger the inflammatory response in the body, which would naturally effect chronic inflammatory diseases of the joints (arthritis) and skin (eczema). Imagine what the continued exposure to stressful situations can do to someone battling an autoimmune disease and chronic inflammatory conditions such as Ankylosing Spondylitis, or a syndrome such a Fibromyalgia which is directly effected by stress.
We are living in very stressful times, but stress does not have to dominate your life. If you learn to master healthy stress reducing techniques now, you can limit your risk of chronic illness, aging related disease or the risk of exacerbating symptoms associated with diseases or conditions that you may already have. There is one technique that we can employ at anytime allowing us to reap immediate positive health benefits, while allowing us to regain control of our minds & bodies and that would be to adapt both an inner & outer smile. It sounds far too simple to actually work, but you can have confidence in knowing that by putting on an immediate outer smile, in spite of whatever stressful situation that you might be experiencing, it forces an inward shift. Which then becomes an inner smile or a positive mental attitude. This chain reaction then tells the body that everything is going to be ok. This causes the body to then immediately stop releasing stress hormones, which returns the blood pressure to normal, while also allowing the immune and digestive systems to regain their normal functions. It also releases endorphins which is a natural pain killer and serotonin which is a mood enhancer. By simply utilizing this little technique we can immediately create a positive mental attitude, which not only allows us to problem solve more effectively, but when used regularly combined with a healthy lifestyle can also extend our lives. Remember when you are under stress, remove yourself from the situation, close your eyes, take a deep cleansing breath and immediately adapt both an inner & outer smile. Have several each day and share a few with friends. Wishing you many beautiful and stress free days ahead “The Positive Pear” Blog:)
Other natural stress management techniques here on the positive pear.
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Over 100 million American live with chronic health conditions and illnesses, such as autoimmune arthritis, ankylosing spondilitis (AS), multiple sclerosis (MS), diabetes, Crohn’s and lupus to mention only a few. Our symptoms—like pain, fatigue, muscle aches and weakness, disturbances in vision, cognitive difficulty, intestinal distress and memory loss—aren’t always visible to the naked eye. The ones closest to us, such as family, friends and co-workers can’t always recognize the sense of loss, loneliness and isolation, that we as sufferers can experience. In spite of the many obstacles that we strive to overcome daily associated with living with chronic illness, we can strive to live full and very meaningful lives regardless of the severity of our conditions. It takes having a good support system, becoming our own health advocates, through knowledge and education about our conditions, symptoms, medications, natural supplements, appropriate healthy nutrition. While also knowing the types of exercise that works for own individual lifestyle and abilities which helps to reduce our levels of stress, which can trigger symptoms. While striving to maintain a positive mental attitude. As someone living with multiple chronic invisible illnesses, I understand the many daily challenges that sufferers can experience and I encourage you to recognize that as a statistical group, or as beautiful, unique individuals, we are so much stronger than we think! YOU are much strong than you think!!
“You never know how STRONG you are until being strong is the only choice you have” ~Unknown~
“Whatever doesn’t kill you makes you stronger” ~Friedrich Nietzsche~
Beautiful people don’t just happen: ”The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” ~Elisabeth Kubler-Ross~