Feb 13, 2016

The Fears of Fibromyalgia

Today I'm having a guest blogger and the very fist one on my little blog. Jenna and I have known one another since middle school and a few months ago her life turned pretty grim. I asked her to share her story with you all in case you know someone or may be having certain symptoms like hers. I urge you not to make mean or rude comments because it was tough for her to write so if you are going to comment, please be mindful. It's a sensitive topic.

Caitlin and I grew up going to Junior High together, realizing at this point and time that we were both premature infants. We created an instant bond of friendship that has tied us together ever since, though our lives have crossed in different directions and even headed down different roads. I want to thank Caitlin personally for allowing me the opportunity to share my story and create awareness to the outside public. 
 My name is Jenna Hafft-Larkin. My husband Ryan and I recently celebrated one year of marriage back in December.  We live in a quite, West-Chicago Suburb, called Bartlett with our two fur babies, FrenchÍ & Briè.  I currently work as a part-time Event Manager for a Country Club in Southern Illinois and about 6-months ago, I was diagnosed with Fibromyalgia, a chronic illness, associated with immune deficiency, and severe joint pain.  My life has taken on a large transition. 

Clinical Definition of Fibromyalgia: Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
  • Pain
  • The pain of fibromyalgia is profound, chronic and widespread. It can migrate to all parts of the body and vary in intensity. FM pain has been described as stabbing and shooting pain, with deep muscular aching, throbbing, and twitching. Neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of the person with fibromyalgia. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.
  • Fatigue
  • In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired after a particularly busy day or after a sleepless night. The fatigue of FM is an all-encompassing exhaustion that can interfere with occupational, personal, social or educational activities. Symptoms include profound exhaustion and poor stamina.
  • Sleep problems
  • Many people with fibromyalgia have an associated sleep disorder that prevents them from achieving deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the Stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.
  • Other signs, symptoms, and overlapping conditions
  • Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination.  (For a more complete list of overlapping conditions, please see http://www.fmcpaware.org/overlapping-conditions.html.)

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
My life and Fibromyalgia:  Since my junior year of college, dating back to 2007/2008 I began contracting extremely severe Urinary Track Infections, with several visits to the Emergency Room, rounds of medication, and kidney pain, this was just the start of the early stages of diagnosis.  As time went on, the symptoms would come and go, I was referred to a Urologist, who diagnosed me with Interstitial Cystitis, chronic inflammation of the bladder.  With a diagnosis being discovered I was hopeful that by minor changes in my diet; my symptoms would disappear.  Looking back now into 2010, 2011 and so forth, my bladder infections continued to affect my body, and now I was starting to experience chronic joint pains in my knees.  For years, I visited Orthopedic doctors, I did physical therapy treatments, and all that was released was that the cartilage in my joints was no longer there.  It has been worn down from years of gymnastics and cheerleading, and well I was far to young to be discussing knee-replacement.  Rolling into 2013, after a heavy-hearted breakup, emotional abuse from previous relationships, and some more familiar and close than I imagined, I went into a Stage 3 depression.  I could barely get out of bed in the morning, I was physically, mentally, and emotionally exhausted, I knew I needed help. Depression, trauma, stress, additional symptoms that correspond with Fibromyalgia. 
In early 2014, as I began preparing for a destination wedding, I began having significant digestion problems. I was constantly getting sick from foods I would eat on a normal basis, I was working out heavily, with hopes of losing weight for my wedding, I was working full time, and losing energy fast.  By the end of 2014, 3 months leading up to my wedding, I again went back into physical therapy this time due to back spasms and neck pain. As my husband and I wed, we said, "I do," we escaped into the Jamaican sunset on our honeymoon, I was not prepared for what would come.  
Shortly after a business trip from San Diego, I came down with a violent spell of nausea and bowel problems. I lost my appetite, and I couldn't keep an ounce of food down, one way or the other.  I had no energy, I could barely get out of bed. I spent two weeks between physicians until I was finally sent to a specialist, where they conducted a colonoscopy and an endoscopy. Remember, I'm only 29.  This specialist  was able to conclude, 7 years after the fact, that I had IBS, or what is known as Irritable Bowel Syndrome, another dormant symptom of Fibromyalgia.  But this wasn't the end, between June and August of 2015, I lost approximately 12-pounds, I was still barely keeping food down, I had little to know energy, and I started having tremors in my legs and arms, I was becoming fatigued, along with having insomnia, I was going weeks without more than hour or 2 of sleep, if I was lucky, I couldn't explain what was happening, but I knew I needed answers.  
Mid-August 2015, after significant testing my physician did what is known as a "tremor point" scan.  This is 12-points (joints) within the body that when pressure is applied cause pain.  All 12-had been pinpointed.  I was officially diagnosed with Fibromyalgia, and all the years and diagnosis before me, were all clear symptoms leading up too and cause of my Fibromyalgia.  My life was about to take a drastic turn. 
Starting in September, I began a series of medication therapy, I went through several weeks of insomnia, upset stomach, and depression.  In Mid-November I was finally set on a routine medication treatment program, today, I currently take 10-12 different medications a day.  My physician explained, that my full-time job was no longer and option, and going from being a well-know manager within the Disaster Recovery Industry, I went to a large salary decrease, to taking a part-time job, where if needed I could work at home on flare days.  With just the following two adjustments to my life, my husband and I had just been together 1-year, we just bought a new house, we have friends getting married, and vacations made, much of this has led to lost friendships, pushing back trips, and supplementing where our incomes can go and to what? Not to mention my sweet, husband, just took on a wife with a Chronic Illness, that one I barely understood, and one that to this day he doesn't get, and that he will live with for the rest of his life.  
Fibromyalgia symptoms: 
As the new year has approached, I have had to significantly look into the effects of Fibromyalgia on the human body and what to do when it comes to the future.  Living in Chicago with winter winds that lead to negative temperatures can guarantee days in bed, significant joint pain, and stiffness. Netflix and hot baths have become a daily ritual during the tough days.  Simple tasks, such as blow drying my hair, doing a load of laundry, walking up flights of stairs, can take a week's worth of energy away from me, so switching tasks and asking more of my husband after his 8 to 9 hour work day are now common.  My social scene has diminished, I can't stay out past normally 8 pm because my body is significantly drained and in need of sleep, I can't drink due to the amount of medications I am on, so typically, I am a pretty boring socialite.  My main group of friends have helped in having early dinners, game nights, or even just movie nights.  The extra company, positivity, and extra time they take is truly a blessing.  I've gained back the weight I lost, and it is significantly difficult to lose now that I have to limit myself to "no impact" activities."  Small walks, gentle yoga, and simple stretching are helpful.  With Fibro I've accrued Fibro Fog, the loss of short-term memory, I have TMJ, pain that can come on almost instantly between my neck and lower-jaw bones, I have severe migraines from severe temperature change, as well as tremors that keep me up at night (a spasm of shaking that last for hours within the legs and arms).  The intimacy between my husband and I has become increasingly less, I have severe pain in my sacrum and pelvic area, making sex very painful and at times unbearable. Not having the ability to give my husband the affection and love he deserves is very difficult for me to handle; and it can cause a lot of frustration within a marriage; when satisfaction is no longer guaranteed.  As I work with my physicians on the conditions of building a family, the hardships grow more intense, the transition of medication is difficult, bed rest during the 1st and 3rd trimester is critical, with miscarriage being so high.  This is just a small portion of the daily struggles associated with Fibro. 

The most difficult is that Fibro patients, never truly look sick.  We dress the same, look the same, smile the same, and we usually don't in fact look sick.  Underneath it all, if you were to view our bodies you would see flare lights in tremor points, notice significant shaking when standing still, and would only know may the individual discuss the condition with another. There is no true cure for individuals suffering with Fibromyalgia. Which makes this type of disease so emotional causing such great depression in its victims.  
In all of a matter of days, I realized I would never work full-time again, that I could no longer support my family the way I use too, that child-bearing already being difficult would be such a challenge, that friends simply wouldn't understand, that communication and intimacy with my new husband would drastically subside, that my family, my parents, might have to help with over-coming the insane amount of medical bills that pile up on my counter weekly.  That if I do have a child a caretaker will be needed.  That living in a cold environment makes me feel brittle and many times useless.  That a once motivated, positive person, could have their life so impacted.  That working out would become more of a struggle and a choice rather than an option, that my entire diet would be affected and need to change, that I completely forget what I did just yesterday. Having an immune deficiency disease causes lack of immunity, so when I develop a cold or flu, it takes longer for my body to overcome the infection that the average person, making my Fibro symptoms worse. On average I see my physician about once a month for constant follow-ups on my medication.  I see a massage specialist once or twice a week for joint therapy, I see a Pain Management physician who controls my pain levels through holistic practices and helps with my nutrition, and I see my OBGYN for constant updates on fertility and updated Fibro treatments during pregnancy.  This is simply just a rough overview of the life I am now living and trying to cope with, there is still a long way to go. 
Fibro is a disease that people need to be aware of, that individuals need to support, read, learn, and encourage individuals to share their stories, and love someone who has this chronic disease, you would be surprise how far that love can travel. 
For more information regarding Fibromyalgia Awareness visit: http://www.fmcpaware.org/symptoms
Questions, Comments, on my story I can be reached by email at: jjhafft@gmail.com, linked on IG MrsJLark #fibrofighter. 

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  1. Oh my goodness I am so so sorry to hear the pain and struggle you are going through. If you need someone to talk to I'm here! Keep you head up and try to stay as positive as you can through this. Remember God ha a plan even though we may not see it or understand it.

  2. Oh JENNA! I had no idea! I'm really glad you were able to get a diagnosis, although it took a long, long time. I firmly believe that everything happens for a reason. Keep your head up and keep moving along :)

  3. I love the idea of giving your back pain a name. I’ve tried this and I find that when I tell my back to stop acting up, it seems to work. I go through my day now telling Jacob to stop because he’s hurting me, and for some reason it feels like the pain just disappears for a while.


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