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The Invisible Illness

by Rachel Campbell 7 months ago in health

Living with Fibromyalgia

Fibromyalgia is an invisible illness. It is a condition that has no known cure and seems to be very common nowadays. There are more than 3 million new US cases per year. It is chronic and can last for years or be lifelong. It also affects more women (90%) than men. It is thought to be the result of overactive nerves in the body. Fibromyalgia requires a medical diagnosis and there is no specific test or scan. The most implemented test is referred to as the tender or pressure point test. There are 18 points (9 pairs) on the body that produce pain when pressure is applied. These certain areas are located on the back of the neck, front of the neck, elbows, hips, knees, lower back, upper back, shoulders, and chest.

Possible causes are autoimmune disease, infection, trauma, and heredity. The most common symptoms are widespread muscle pain and tenderness. People may experience any of the following:

*pain in muscles, abdomen, back, neck and it may be chronic, diffuse, sharp, or severe

*gastrointestinal disturbances such as constipation, nausea, bloating and excessive gas, irritable bowel syndrome, frequent urination and irritable bladder, difficulty swallowing, food allergies/sensitivities such as gluten

*extreme fatigue or Chronic Fatigue Syndome, feeling tired, malaise

*pins & needles feelings, sensitivity to cold or heat (allodynia), exaggerated sensitivity to pain (hyperalgesia)

*mood swings, anxiety, nervousness, depression, irritability

*difficulty falling asleep and/or staying asleep, insomnia, restless legs, sleep apnea

*forgetfulness, lack of concentration, confusion, short term memory impairment...all also referred to as "fibro fog"

* headache, migraine, dizziness, ringing in ears (tinnitus), teeth grinding (bruxism), jaw pain or TMJ

*joint stiffness; especially in the mornings

*painful menstruation, PMS, premature menopause, loss of sex drive, impotence in men, vulvodynia, fibrocystic tender breasts

*parasthesias or tingling and/or coldness in hands and/or feet

*allergies

*muscle twitches

*chemical sensitivities such as fragrances

*sensitivities to pressure changes, temperature, & humidity

*sensitivities to light and noise

*poor balance & coordination

*irregular heartbeat, mitral valve prolapse, pain that mimics a heart attack

*nails with ridges or curve under, skin that bruises & scars easily, temporary hair loss, tissue overgrowth such as skin tags

Most common treatment is medication: Selective Serotonin Reuptake Inhibitors (SSRI), analgesics, nonsteroidal anti-inflammatory drugs (NSAIDs), nerve pain medication, and muscle relaxers. Other recommended therapies are yoga, massage, acupuncture, hydrotherapy, and chiropractic techniques.

The average age range at which fibromyalgia is diagnosed is 35 to 45 years old. I was around 22-23 years old when I began experiencing my first symptoms in 2001. I was not formally diagnosed until I was 27 in January, 2006. I was having horrible migraines, extreme fatigue, grinding my teeth during my sleep, crazy right hip pain, and feeling depressed. I already had GERD since 1996. I was also in my first marriage, had step-children, and worked a super stressful job as a legal assistant. I didn't know why I was feeling so bad all of the time and my doctor prescribed me medicine and gave me shots for my symptoms. Fibromyalgia was something that I had not heard of at that time. Needless to say that marriage was strained and only lasted 3 years.

After my divorce in 2003, I quit my high pressure job in 2004. My symptoms seemed to abate for awhile. I had an incident in 2004 when, after moving into a rental house with my sister, I was so sore and it hurt to move my body. I was bed bound for a day. I quit smoking in early 2005 and married my second husband later that year. I still had migraines from time to time and fatigue but I was okay. During this time period, I started working for my doctor as her receptionist. She was monitoring my thyroid which was borderline and something that is called ANA (antinuclear antibodies) was going back and forth from being negative to positive. I joined the Curves workout center for women and experienced a day where I woke up the next morning from working out to my knees being so swollen and sore that I could not walk. I took some Celebrex and it went away. What was going on with me?

Eventually the nurse practitioner who worked with my doctor suggested I see a specialist, a rheumatologist, after the most recent positive ANA results. I made an appointment with a kind older lady whom my mother had previously seen. She drew six vials of blood to test for all autoimmune diseases and extensively questioned me. Upon follow up, my labs were all negative (thank goodness!) so she performed the tender point test on me. There were spots that she pressed that I did not even know we're so painful! I about came up off the exam table several times. I was bewildered. She then told me that, after careful review of all presenting information, she had come to the conclusion that I had fibromyalgia. By now I had heard of this syndrome as my mother had recently been diagnosed as well. I left her office feeling very overwhelmed and discouraged. I so did not want this label. Fibromyalgia was new and a lot of doctors did not understand it. There were not a lot of resources for one to educate oneself. Moreover, society did not recognize the symptoms and illness. It was considered a "fake" illness and patients were generally just considered lazy. Wasn't I too young to have a disease like this?

Later in 2006, I began experiencing some strange out of body feelings and heart palpitations. My heart was beating strangely and I was having pain and weird sensations in my chest. I started seeing a heart specialist who had me wear 2 different Holter monitors and then I did an in-lab day of stress testing. Upon follow up, he said that I had anxiety. Seriously?? All of that just to say I had anxiety?

My second husband was present when the doctor gave me the fibromyalgia diagnosis yet he spent our marriage in denial. He constantly told me it wasn't real and I was just lazy and faking being sick. I was forever reiterating why on earth would I wanna be that young and feel so bad? Who wants to hurt? Who asks for that? I mean...Really?? He never understood; hence, my second divorce after ten years of marriage.

We had spent two years trying to conceive and I finally became pregnant and gave birth to our son in June, 2008. I can honestly say that I felt wonderful during pregnancy until the end when my legs and feet were so swollen. I was blessed to never have had morning sickness. But it wasn't very long post pregnancy before I had to start back on all the medications that I had weaned myself off.

Fast forward to present day. I am deeply ensconced in multiple fibromyalgia symptoms. Cold weather, rain, and intense physical activity preclude flare ups. I am a single mom who works a full-time job, even though it wears me out, to provide for my son and myself but I am determined to be independent. I will be 43 years old this year and do not want to be considered disabled.

Though fibromyalgia is now a common diagnosis, there is still a lot of ignorance surrounding it. Most people do not know what it is and what it involves. I have family and friends who just do not comprehend my illness at all. I can't decide if it's because they just don't want to believe it or they choose not to look it up and educate themselves. It is a serious debilitating illness and mocking anyone who has it really frustrates and angers me.

I do not have a lot of friends and I do not have a social life. Most of the time, I do not feel like going out to do anything. Getting ready requires energy that I do not possess. I am always super tired after work. And if it's wintertime or raining, I am guaranteed to be indoors. The summertime warmth makes me feel best. I love to lay out in the late afternoon sun and relax.

My son is still learning that Mom is kind of fragile. He can't playfully grab, push, smack or tickle me because it hurts. We can't wrestle and he can't sit or lay on me because it hurts. I can't handle a lot of noise...especially loud noises. And I am always so tired. I leave the amusement park trips, go-carting, and other adventures to his father because I cannot walk around and stand for hours at a time without my hips, legs, and feet killing me and then being so stiff and sore the following day. It really depresses me and makes me feel like a failure of a mother to not be able to properly interact and participate in activities with my son. I pray that one day when he is older that he chooses to understand my illness and forgives me for a boring childhood.

Any man that I may become romantically involved with in the future will have to be accepting of my restrictions. I am not too optimistic about finding a person who likes to spend a lot of time home resting. I never know from day to day how I will feel...or even from morning to evening. This greatly hinders making plans ahead. More times than not I have to cancel pre-arranged dates and find myself not able to attend events. It is very irritating and disheartening. A lot of days I just want to scream but I have to tell myself to stay positive. If God has put me in it then he will always help me through it. I am just blessed to be alive!

I currently experience most all of the symptoms listed above. The most prevalent are chronic fatigue, upper back pain, and headaches/migraines. I take Lyrica for my pain and stiffness, Venlafaxine ER for anxiety/depression, Esomeprazole for GERD and gastritis, Loratidine or Ceterizine for allergies, multi-vitamin, Relpax for migraines, Baclofen for muscle tightness, 800 mg Ibuprofen for aches and pains. I cannot live without my heating pad! I have tried yoga but don't have the motivation to practice it regularly. Massages are wonderful but expensive so I usually can only afford one professional one per year. I am interested in holistic and natural remedies and want to pursue these methods. I am also reading a book on detoxing the body. I would like to decrease medication independence, if possible, and try to lead a healthy life. The Mediterranean diet and Keto are currently of interest to me too. Whole grains, fresh fruits and vegetables or meat, cheese, and berries. And the essential oil fad has some benefits.

I pray to one day not be held prisoner to this awful illness that is gripping me so tightly right now. My mother has experienced a wane in her symptoms in recent years so I have hope for future years as well. If you or a loved one, or even someone that you just happen to know, has been diagnosed with fibromyalgia; I beg you to please educate yourself and offer support. Be understanding when plans have to be canceled. Help with housework and errands and childcare. Most of all offer love and lots of hugs.

For information on local support groups, please visit www.fmcpaware.org.

health

Rachel Campbell

I am a single mom living in East TN. I suffer from fibromyalgia and try to make the best of each day. I am a bonafide book worm and used to write poetry in my younger years.

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