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.

9 thoughts on “Hello 2012 & Hello to Coping with Ankylosing Spondylitis, Fibromyalgia & CFIDS!

  1. Thank you for your story, it is my story as well. I am now in my 5th year of these diagnosis’ and still looking, searching for a life that I can live, since loosing my “other” life.

    • Thank you so much Liz!! I’m very happy that my story is one that you can also relate too. I think we are always searching and adapting. However, how successful we are depends upon our mindset, which can naturally waiver at times. I started The Positive Pear to help us all maintain that positive focus. ❤

  2. Hi there….I’m curious of your mention of hypermobility syndrome. I was diagnosed with AS back in April, but when going for a second opinion last week, that rheumy mentioned hypermobility syndrome as opposed to AS ( since I had had no xrays or bloodwork to test for HLA-B27 ). I am trying to be positive about all of this, but admit that lately I’ve been flagging. I have been feeling AWFUL for at least 10 years…and thought yes! I have a diagnosis at last. But my second opinion the other day made me feel like “Oh crap! Back to square one….” Especially if the xrays don’t show anything….and I’m not HLA-B27 positive. I’m not saying that I want to be sick…..but having a diagnosis gave me a focus on how to take care of myself. Now I admit to being discouraged. To be fair, second opinion doctor thinks that it is quite possible I have hypermobility syndrome and fibromyalgia on top of AS (pending xray and lab results). Am I wrong in feeling like doctors seem to use different criteria on making diagnoses? It doesn’t seem like folks are on the same page. I actually love the rheumy who made my diagnosis…she is the first to listen to me. Really listen. And she requested the second opinion to get a second pair of eyes on me. And I’m thankful to her. Just how to cope in the meantime. I have also been out of work since May–on short-term disability. And I’m worried about what happens when that runs out in the beginning of December. I have no stamina to make it through a workday…and miss all the hiking and whatnot I used to do. I am so sorry to ramble here….I normally really do have a positive outlook….but I am struggling a bit today. I’m so thankful for your blog, and everything else I’ve found on the web…invaluable support.

    • Hi Anmillios~ I’m so sorry to hear of your struggle and I can so relate to the strong need to have a name for what plagues you, because it will allow you to move forward. I have been there, I went most of my life without a diagnosis. It wasn’t until my disease had progressed many, many years later that I’d finally received answers for the many symptoms that I’d experienced since childhood. As a result of the many misdiagnosis, I begin to focus on simply being healthy and taking good care of myself. This mindset really helped me several years later when I did finally have a name for my disease. As a result of the path I chose I also had real, viable, healthy, alternative solutions as well. I think it’s difficult for doctors to diagnose AS without HLA-B27 and without having a testing protocol in place for the new genes that have been associated with Ankylosing Spondylitis. This leaves many patients undiagnosed or worse misdiagnosed and you’re right, many within the medical community are not on the same page when it comes to such an elusive disease.

      Hypermobility Syndrome not only allows for extremely flexible joints, it can also contributes to chronic pain. However the chronic pain associated with HBS is usually experienced as a result of injury, due to extending the joints beyond their normal range of motion. However with AS, you don’t need an injury, though your body tends to overreact to injury, you can wake up stiff and in pain without provocation. Fibromyalgia for me has a far more neurological impact, with chronic pain being in specific areas and the fatigue from both conditions is simply exhausting…excuse the pun. Getting answers to these types of diseases/conditions takes a great deal of perseverance and the right doctors. Please don’t give up hope! Become as knowledgeable of each conditions as you possibly can and continue to seek out doctors who are just as willing as your are to find answers. Thinking of you and you will remain in my thoughts and prayers. Big Hugs!!<3

      Singapore and China Scientists Identify New Genes Associated With Ankylosing Spondylitis (AS):
      https://thepositivepear.com/2011/12/07/singapore-and-china-scientists-identify-new-genes-associated-with-ankylosing-spondylitis-as/

  3. Hi there, I have a question about diet and fibromyalgia. I have AS and follow a no starch diet which has thankfully led to full remission. But if I cheat I get pain, so it’s a no brainier. I have a friend with severe fibromyalgia. Is the no starch diet helpful for that too? I know I read something by Dr Alan Ebringer on fibromyalgia but can’t find it. I don’t want to recommend trying the starch free diet to my friend if it is totally unrelated. Any ideas?
    Thanks,
    nic

    • Hi Nicola~

      A no starch diet is challenging yet quite effective. It works very well for many conditions including AS & diabetes among many others, but a Fibro sufferer might benefit best from a low-carb diet. Though a low starch diet will be just as effective, it’s not necessary. A reduction or elimination of simple carbs such as breads, pastas, cakes, cookies pastries etc. will do wonders. A fibro sufferer could get away with eating healthy whole grains, where as an AS sufferer might find that whole grains can exacerbate their pain. It’s also good for sufferers to maintain a food journal to keep track of what type of reactions they have to certain foods. This helps with knowing which foods to eliminate and why.

  4. I have just been diagnosed with FM after almost 5 years of trying to figure out what was wrong with me so I am still in the very early stages of learning about the condition. Tonight is the first time I have looked at your blog and I have found it massively helpful already so a big thank you. Lynnette

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s