FIBROMYALGIA – THE MYSTERY DISEASE

It was recently reported through Good Housekeeping that Lady Gaga has just released a documentary entitled Gaga: Five Foot Two which, among other things, reveals her constant and painful fight with fibromyalgia. Within the film she states that she has no idea how people without her financial means can possibly survive these horrid attacks. Her money allows her to obtain the best of medical treatment and support staff. Others less fortunate struggle on.

The release of this revealing documentary is very good news for those suffering all the same symptoms but not receiving the assistance they need. Hopefully it will raise fibromyalgia awareness to the point where more research will be undertaken to find a cure, or at the very least some more effective pain relief.

For many years people have suffered severe headaches, joint and muscle pain and swelling, touch sensitivity, chronic fatigue, bowel problems, and finally, not surprisingly, depression, but a diagnosis was elusive and a guess, at best. After countless consultations with doctors, test after test, and every conceivable pain medication, no end was ever in sight.

The fear of the unknown is often as worrisome as the pain itself and for these desperately ill patients there was never a reprieve. Often they were told that their pain and related symptoms were psychosomatic or stress related.

When the name fibromyalgia was eventually attached to the malady it was rarely taken seriously, much less recognized as a very real, very painful disease. Naysayers often accused doctors of using this as a convenient label when the symptoms fit no familiar or well known diagnosis. Even worse, the pain-ridden, frustrated, frightened sufferers were accused of being hypochondriacs or “whiners.”

Annette Rush of Alberta, Canada was one such victim. Fibromyalgia is often triggered by stress and this was the case with Annette. Just prior to the manifestation of her symptoms she suffered multiple heart wrenching losses of family members. In 1999 her only brother, brother-in-law, three sisters-in-law, and her beloved husband all succumbed to various diseases such as cancer and dementia. Then in 2000, her mother passed away.

It was then that this heartsick woman suddenly began experiencing general fatigue, insomnia, and constant, wracking body pain. Perhaps understandably, her doctors assumed this was her sorrow and mental anguish manifesting into physical symptoms. During that painful and baffling period, amidst countless medical examinations, Annette was prescribed numerous medications to alleviate the pain but, finally, astoundingly, she was diagnosed in 2015. Fibromyalgia. Sadly, the side effects of the prescribed pain killers were devastating. Lyrica and Percocet eased the pain but produced too many side effects. Aspirin-based drugs caused hemorrhages in her eyes and triggered her ulcer. Ibuprofen is now her safe, most used medication and allows her to keep functioning although in no way guarantees a normal, pain free life.

Another victim, Tammy Grundy, also of Alberta, began manifesting symptoms in 2008. Excruciating muscle and joint pain, swelling of extremities (hands so severe that she had to struggle to open and close her fingers), and constant fatigue were her daily and nightly companions. Suddenly she developed a horribly painful eye condition which resulted in not only pain but redness, incredible sensitivity to light, and general discomfort. Constant application of eye drops was her only relief. The diagnosis: Iritis, or “arthritis of the eye” which is occasionally an unwelcome companion to fibromyalgia.

She was also examined by doctor after doctor, and put through countless MRI’s, CT scans of her head, neck, and back, and extensive blood work. After four agonized years with no results, no answers, her body losing mobility by the day, a new specialist discovered that Tammy was suffering from very nearly all of the typical fibromyalgia pain spots. Finally a diagnosis! Bad news – no magic cure. No one medicine or treatment works for all sufferers of this disease. His instructions were to walk every day, swim a great deal, exercise whenever the pain was less severe, but not to overdue at any of these activities or it would set her back for days. To her consternation, and inadvertently, she discovered this the hard way.

In Tammy’s words, “I have found my own cocktail of pills, after much trial and error.” On good days she gets by on one Aleve per day. On bad days that increases to two to three per day. In addition, each day she consumes four thousand units of Vitamin D and two glucosamine chrondrotin.

“On days when it hurts to move and I need assistance getting out of bed, and even my hair and nails hurt, nothing helps. I have finally learned to listen to my body and can recognize those times when I need a day to relax and do nothing. Emotional events and physically overdoing it tend to send me into a downward spiral.”

A third woman who suffers from fibromyalgia, as well as several other related syndromes, is my friend Lorinda Ramsay. A single mom who lives in Vancouver, B.C., Lorinda struggles painfully through every day of her life with the ravishes of illness, all while attempting to provide her sixteen-year-old daughter with the normal life she deserves.

Lorinda was employed in first radio, then television for several years. It was while working as Promotions Director for a local Vancouver TV station that her fibromyalgia symptoms progressed to the point of becoming so debilitating that it was physically and mentally impossible for her to continue her employment and care for her daughter. Here is Lorinda’s story, in her own words:

“I would wake up each morning in extreme pain throughout my body. As a single mom I would struggle to get my daughter to daycare on time (both before and after school as she was in grade two at that time). Often it would be necessary for me to vomit in a plastic bag on my way to work. I was emotionally and physically exhausted by 8:30 am.

“Most of my work day consisted of popping Tylenol and Advil, having bouts of diarrhea in the company washroom, pacing the floor in an attempt to cope with my stress, all while trying to complete my job responsibilities.

I continued working at a high pace, ignoring my symptoms and not taking care of myself. I was a workaholic, a people pleaser, and desperate to take good care of my daughter. Often I would take my laptop to McDonald's after work so she could eat and play while I sneaked in a few more hours of work.

“Eventually I could no longer cope. I visited my doctor to try and get some answers. In the meantime I went on short term disability for a couple of months while he attempted to diagnose my issues. After a long and painful process he came up with a few different diagnoses, one being fibromyalgia, and I was put on long term disability.

My entire self- esteem centred around my career so I became extremely depressed and worried as to what my future held. To this day I keep a card next to my computer that reads, “A job is not who you are, it’s just something you do.”

“I began to eat healthier, exercise, and take self-improvement courses to assist me in learning how to deal with stress and the disease. The more I learned about the condition, the easier it became to manage the symptoms.

My Pain Specialist at B.C. Women’s Hospital says there are a variety of things that factored in to my diagnosis. When I was seventeen I contracted the mononucleosis virus, caused by the Epstein-Barr virus, which he says initially triggered it. This was followed by the trauma of two car accidents, within two months of each other, and the gene is also hereditary. My mom suffers from FM also.

“About a month before my daughter was born I became unable to walk and this continued until well after she was born. This trauma could have pushed everything to the forefront.

“When I was a new mom my Chronic Fatigue Syndrome (also newly diagnosed) was almost unbearable. It worsens when you reach the age of forty so now it has worsened again. Often by 10:30 am I am exhausted and my brain seems to just shut down. I literally cannot remember simple tasks such as how to turn the stove on or start my vehicle and my own telephone number is beyond me. This is common with fibromyalgia sufferers and is referred to as Fibro-Fog. It was very comforting to finally understand that this is a symptom of the disease and I was not going crazy. It was necessary to train myself to perform my tasks in small sequences and pace myself carefully. Here are two websites which have been very helpful to me:

http://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/fibro-fog.php

http://www.cfidsselfhelp.org/library/how-i-use-pacing-manage-cfs

“As explained by my pain specialist we have multiple tender points on the body and tenderness is felt on eleven to eighteen of these points by fibromyalgia sufferers. They are painful lumps that develop in tight bands of muscle and form when the muscles contract and do not fully release. I had fifteen of these, oddly enough the most tender being on the insides of my ankles.

“ I have experimented with many, many treatments to ease my symptoms and these are the ones that were successful for me: Acupuncture, trigger point injections, relaxation techniques, nutrition, chiropractic care, gentle exercise program or massage, hot baths with Epsom Salts, behavior modifications, posture training, meditation, and an assortment of medications recommended by my doctors. Other patients may benefit from physical and occupational therapy, pain management and coping techniques, and pacing.

Foods To Be Avoided:

As previously mentioned a healthy diet assists in managing fibromyalgia. There is no single set of dietary guidelines that is right for every sufferer but the avoidance of some foods, such as these listed by WebMD, offer benefits to some:

1. Aspartame (NutraSweet) – There is a pain receptor in the nervous system known as NMDA. When pain turns from acute to chronic it opens this receptor. Aspartame stimulates this event.

2. MSG and the nitrates found in processed meats are also to be avoided.

3. Sugar, fructose, and simple carbohydrates can reduce symptoms of chronic yeast infection, a fungus that is sometimes a secondary condition contributing to the pain of fibromyalgia.

4. Caffeine is often used by FM sufferers as it is considered a stimulant. However the boost they get is false and quickly exacerbates fatigue.

5. Yeast – some doctors believe that it fosters the overgrowth of the yeast fungus in the body. This may cause or increase the joint and muscle pain associated with FM.

6. Tomatoes, peppers, potatoes, and eggplant are said to trigger flare-ups of arthritis and fm.

“Avoiding certain foods may help individual patients to better cope with their disease” states nutritionist Samantha Heller. Also helpful is a high potency vitamin supplement as well as supplements containing omega 3 fatty acids.

“A new treatment has recently been discovered called Laser Therapy which is a restore sensor neurostimulator which sends electric currents to automatically neutralize pain.

“The worst thing about fibromyalgia is that stress increases your pain.You must decide to manage your stress, first by identifying your stress triggers. While negative events are of course more stressful, be sure to also assess positive changes in your life. Once this is done, it is possible to begin to figure out strategies for dealing with them. Seek help with this from family and friends. Stress will not disappear from your life but with practise you can learn to manage it and increase your ability to cope. Relaxation techniques are an essential part of stress management.”

Researchers now know that fibromyalgia is a muscular skeletal disorder that amplifies the way the brain processes pain. The condition typically begins following severe physical trauma such as an accident, a surgery, or after massive psychological stress.

Symptoms of fibromyalgia are many and varied and differ in each patient. Here is a list adapted from one compiled by fibromyalgia author Devin Starlanyl, as well as from other sources:

  • Delayed reactions to physical exertion or stressful events

  • Sweats

  • Unexplained weight gain or loss

  • Chocolate and carbohydrate cravings

  • Headaches and migraines

  • Vision changes

  • Pain ranging from mild to severe, that may move around the body

  • Morning stiffness

  • Muscle twitches

  • Diffuse swelling

  • Allergies

  • Mold and yeast sensitivity

  • Shortness of breath

  • Earaches, itchy ears, and/or tinnitus

  • Light or broken sleep patterns

  • Chronic fatigue

  • Sleep starts (falling sensations)

  • Restless muscle twitching

  • Menstrual problems

  • Loss of libido

  • Bloating and nausea

  • Abdominal cramps

  • Pelvic pain

  • Irritable bowel syndrome (as an overlapping condition)

  • Urinary frequency

  • Language impairments, directional disorientation, loss of ability to distinguish some colors, short term memory impairment, trouble concentrating

  • Poor balance and coordination

  • Tingling or burning in limbs

  • Sensitivity to odours, light, and/or noise

  • Sensory overload

  • Panic attacks, tendency to cry easily, mood swings, unaccountable irritability

  • Irregular heart beat

  • Depression (as an overlapping condition)

  • Pronounced nail ridges, nails that curve under, mottled skin, bruising or scarring easily

  • Nose bleeds

Every FM patient has various symptoms, but usually not all, thus making it extremely difficult to obtain an accurate diagnosis.

Finding herself unable to work and thus with countless idle hours on her hands, even though often wracked with pain and fighting to remain awake, Lorinda Ramsay made the decision to research her nemesis thoroughly in order to benefit fellow fm sufferers. Countless hours later she had compiled a comprehensive study on the disease which she has willingly shared with other unfortunate fibromyalgia victims.

Since then this indomitable little person has organized a support group for chronic pain sufferers where she offers information, encouragement, and comfort to those desperately in need.

As well, she volunteers with the People in Pain network (www.pipain.com), which is the only Canadian non-profit organization providing peer-led pain self-management groups in Canada. At this time it services both Alberta and B.C. and hopes to expand across Canada in the near future. The credo of this network is the belief that providing education and support and by connecting people who live with chronic pain to available solutions will improve their quality of life and that of their loved ones.

Another excellent source that Lorinda discovered during her research and her quest for relief is the Fibromyalgia Wellspring Foundation: http://www.fibromyalgiawellspringfoundation.org which holds support groups throughout the lower mainland of B.C. They are now in the process of building an entire Wellness Village to be located in Langley, B.C.

She recommends all chronic pain sufferers to ask their doctors to refer them to the Complex Chronic Diseases Program at B.C. Women’s Hospital for further support and information.

Through Lorinda’s extensive research, she has discovered the following very useful websites for people with fibromyalgia:

Me and Fibromyalgia Society – www.mefm.bc.ca

National ME/FM Action Network – www.mefmaction.net

CFIDS & Fibromyalgia Self Help – www.cfidselfhelp.org

Treating Chronic Fatigue Syndrome & Fibromyalgia – www.treatcfsfm.org

Unquestionably fibromyalgia is a cruel and debilitating disease. It robs its victims of their right to a decent, pain free life and subsequently negatively affects their families, friends, and co-workers But finally, finally there is a glimmer of hope, a light at the end of a very long, dark tunnel. Yes, it is now formally recognized as a legitimate disease and thanks to people like Annette,

Tammy, Lorinda, and countless others, awareness is progressing and the knowledge that help is on the way is very comforting. However much, much more research is necessary in order to discover a complete cure rather than coping mechanisms alone. At this point there are still way more questions than answers.

SOURCES:

Annette Rush – a.k.rush45@gmail.com

Tammy Grundy – tammygrundy@gmail.com

Lorinda Ramsay – lramsay8@hotmail.com

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