Fibromyalgia - A Disability, but NOT an "Inability"
Written: May 12 '01
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Pros: FIBROMYALGIA - Now being recognized by the medical community, and Social Security Disability Administrators.
Cons: Fodder for the "Disease of the Month" folks, prior to a rheumatologist's bonafide diagnosis.
The Bottom Line: Fibromyalgia has been with us for decades. Interest, however, in this potentially debilitating condition is increasing. Obtaining the support of others similarly afflicted is essential to living with it.
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| fiona32's Full Review: Adult Health Issues |
This Epinion is my better-late-than-never (I hope!) contribution to a write-off hosted by tinasamuels entitled "Random Thoughts Editorial Write-Off". At the end of my essay is a list of the other fine participants, if you haven't already checked them all out. And a special thanks to Tina and Dawn for helping me deal with "technical difficulties".....nuff said!
I was diagnosed with Fibromyalgia approximately 5 years ago, after 20+ years of dealing with the symptoms, and the fear that I was probably just neurotic, with an abysmally low pain threshold. Doctors didn't talk about fibromyalgia, (or fibrositis, as it was called, among other things, 20 years ago). The emotional toll, prior to diagnosis, that it takes on those of us who truly do have it(about 4% of the population),can be significant.
For all of that time, I had run the gamut,trying to understand my almost yearly medical leave since about age 30, because of the leg, neck and back pain, and the other most common Fibromyalgia symtoms. These include IBS (Irritable Bowel Syndrome) severe daily headaches, and most of all, the physical fatigue, that would hit out of the blue, for a day or a month or more.
Today I thank God for what I found out, and what my life is like. I never thought I'd say that - even up to a couple years ago, before I incorporated some holistic aspects into my daily discipline that helped me see things with some serendipity, and from a spiritual perspective (not all days, believe me!)
I personally think one of the worst things we can deal with is being in mystery; guessing, fearing the worst, just plain not knowing, and letting our imaginations run wild.
But I didn't want to voice the fears, lest I be thought a hypochondriac or complainer, and at work, a malingerer. So I kept quiet, and kept doing it all, and then some - raising two daughters (with lots of help from my ex-husband during their teens), working 50+ hours a week, and getting my BS degree. (It only took 22 years!) And the illness' symptoms continued, unidentified, untreated.
WHAT IS FIBROMYALGIA?
Obviously I have a file that is 2 inches thick, having gathered so much information these past few years,through my own research, at seminars and our FM Support Group. So I'm going to copy some information verbatim from doctor's handouts, and will put that in quotes. They can do a better job than I can.I can see that this will probably need to be continued in another Epinion, taking a different tack, as far as the relief of living in acceptance and adjustments today, and how I manage it. Being able to do things with my family and friends, like going to auctions, flea-markets, taking my grandsons to Lake Michigan metal-detecting and bird-watching (Theron, my 12 year old, not me!), gardening (with limitations),swimming, are wonderful activities I no longer take for granted. I'd thought they were definitely relegated to a past I'd have to accept.
SYMPTOMS
"Fibromyalgia is a 'chronic invisible illness'. It isn't just a form of muscular rheumatism. It's actually a type of neurotransmitter dysfunction. (Neurotranmitters are what the brain uses to tell the body what to do). We think 4% or more of all people have FM.
It's a neuromuscular chronic pain condition with 18 specific trigger points, that not only refer pain, but can also cause symptoms such as extreme dizziness, migraines, buckling knees, and calf, foot,shoulder and neck pain. Diffuse body-wide pain is the major symptom of Fibromyalgia. An American College of Rheumatology study in 1992 found that the impact of FM on one's life is as bad, or worse, than Rheumatoid Arthritis. They listed one major factor in this as "clinician bias". FM patients don't look sick unless they're in a major exacerbation or "flare-up. Until the last 5 to 7 years, not only clinicians, but family and friends just often did not understand, leaving the patient with self-doubt, guilt, confusion and loss of self-esteem".
(ON A PERSONAL NOTE, I DON'T NECESSARILY AGREE WITH THE ABOVE, regarding Rheumatoid Arthritis. I have friends with this debilating illness, and my respect and compassion for what they go through day to day is incredible. I don't choose to make this a 'better/worse' comparison. I have osteoarthritis, and have had 5 knee surgeries, and still would not begin to compare the lifestyle adjustments. It's not a question of which is more difficult to live with: rheumatoid arthritis, lupus, fibromyalgia, or other auto-immune diseases. They are each specific, chronic illnesses. The similarities are present and life altering. In approximately 25% of FM patients, they are forced to use canes, limb braces, electric carts and wheelchairs, in order to maintain some semblance of a normal life. It just is not all about the disabilities involved - I guess that's what I've had to learn and re-learn over these past few years. My daughter's favorite quote, since she read about Helen Keller in 2nd grade, is that "life is either a daring adventure, or it's nothing". I really cannot disagree with a word of that for myself today. And it has nothing to do with the particular illness I have.
Emotionally, mentally - life can be, and for the most part is very good. (I have a wonderful 70 year old friend who calls "normal - just a setting on a washing machine").
Self-pity, self-absorbtion, isolation - these are what I think are the real enemies with FM patients. It is why I stopped going to our local Support Group after about 6 months, til the focus of it changed. We're all individuals, with different coping mechanisms, degrees of progression, and immune systems. And when I really got down to it, ......(and this took some time; believe me).....so what? I would call myself a healthy woman today, who happens to have fibromyalgia and arthritis. Period.
HOW IT WAS THEN, WHAT IT'S LIKE NOW - A BRIEF OVERVIEW:
I can remember coming home from a day sitting at GM typing for 8 hours, hurting like heck, but going out and running 2-4 miles each night before I made the girls' dinner. (I was divorced after 7 years of marriage). I even ran in a few 5 and l0K races. After all, my pain could be "all in my head". NOT! The symptoms back then, 20-25 years ago, were just starting though. So I 'pushed'. I convinced myself that it must be mental/emotional (as many women do for years, before diagnosis). The pain ran from severe upper, mid and lower back pain that prevented me from sitting for more than 30-45 minutes at a time, to leg and foot pain that simply defied explanation. My now 32 year-old daughter remembers rolling the wooden rolling pin up and down my back each night after work, as I lay on the floor, during what we now know were flare-ups, and what soon followed -- another medical leave for 2-3 months. Thank God I refused to have back surgery.
"One symptom of FM is a type of dysfunctional sleep called the alpha-delta sleep anomaly. As soon as people with FM reach the deep level sleep (REM - the Rapid Eye Movement phase), alpha brain waves intrude and can jolt them back to shallow sleep or wake them entirely. Not only are we denied refreshing sleep, but delta level is when the body does repair work and chemical replenishment".
When I was diagnosed, (which I still think of as a miracle in itself - that my General Practice doctor had just returned from an Arthritis Seminar and learned about all of the undiagnosed, untreated Fibromyalgia patients), I was told by my rheumatologist, after peppering him with every question I'd had for years, that this was multi-faceted -
a sleeping disorder, a disordered muscle tension feedback system, thus the reputation I had as the family klutz, dropping glasses of water, hot drinks - and the pain was acute as well as chronic, because my muscles never had an opportunity to relax'. He also explained to me that my gastric problems, (the IBS, the bladder spasms I lived with, the chronic tension/migraine headaches that progressed in frequency, had EVERYTHING to do with fibromyalgia.
But to be relieved at hearing a diagnosis still sounds kind of ludicrous. Yet I'm sure those of you that may already be getting treatment for Fibromyalgia know from whence I speak! Again, that "just knowing, finally, what is wrong with me!" Most people acknowledge that their symptoms began at an early age, that about 25% are men, and that it is generally at least l0 years of searching and misdiagnosing, before the appropriate Trigger Point Tests are done, and Fibromyalgia is diagnosed.
SOME FINAL MEDICAL INFORMATION FROM THE RESOURCES I REFERRED TO:
"If people with Fibromyalgia are immobile at any time, such as during travel, or sitting in a meeting, or sleeping, their muscles get rigid and painful. The usual medical tests come back negative, which often causes us to battle disbelief from our companions and health care providers. Symptoms can fluctuate from hour to hour and day to day, and often worsen with changes in the weather.
Fibromyalgia and chronic Myofascial Pain Syndrome (another syndrome so close to Fibromyalgia that they're sometimes labelled interchangeably), were two of the most undiagnosed illnesses there have been for many years. Doctors often referred patients to psychologists or psychiatrists. Yet recent studies show that psychologically, these patients have the same amount of abnormal psychology as Rheumatoid Arthritis patients". (In other words, we can be depressed, angry, frustrated ----- euphoric, silly, delighted; all those feelings we all can choose, to some extent obviously).
"Research is showing that people with FM have low growth hormone, which is involved with muscle repair. Some researchers think that the key problem is a central nervous system abnormality upstream of the spinal cord. The FM body is an engine idling at 35% power, rather than a normal 5%. Most FM patients have memory and cognitive impairments". This is referred to in our Support Groups as "Fibro-Fog" - memory lapses, directional impairment, inability to recall simple words, which is he-- for a writer!....and most of all, the debilating and unpredictable fatigue.
Again, this topic could go on for pages, so I'll stop here, and revisit it from a different vantage point later. I do hope this information has given any readers that can identify with anything I've shared, some hope. If you feel like the "Princess and the Pea" from nursery stories, and have accepted the fact that for you, little things that others take for granted, like wringing out a washcloth, or writing a letter, or opening a bottle of Diet Coke, become pain endurance sessions, some of your symptoms may be due to Fibromyalgia. FM simply amplifies what is called "trigger point pain", of which there are l8 specific trigger points that physicians use as the litmus test for their diagnoses.
Leaving this on a positive note, not ALL patients with Fibromyalgia are on Disability, it is NOT progressive like MS, (which it's often confused with in the diagnostic stage), and like anything in life, as I've tried to stress, we have the ability to adjust. I personally think we can adjust to almost anything, if we allow ourselves an appropriate time for grieving. For me it was grieving a major lifestyle change -from 38 years of working full-time, being a social worker and therapist, to being a 50+ 'medically retired' woman. And I love my life today. I may have less money, but I have a lot more time. And I guess it's all relative. Without my own spiritual path, and the comfort I find in it, I wouldn't be writing this. That I know.
Living with Fibromalgia, CFS, Myofascial Pain Syndrome; it is being done by thousands of people today,and living a quality of life that encompasses joy, compassion, gratitude, kindness - and balance.
If anyone would like to e-mail me regarding questions they may have, please do not hesitate. This is not something you brought on yourself, and while there is no cure, there are medications, herbs and supplements, and what has worked well for me, those "lifestyle changes"......moderate exercise, visualization, nutrition, and other holistic bodywork like acupuncture, chiropractic, massage and others. Also, there are countless Message Boards, Web-sites, and Medical Articles on the Internet on Fibromyalgia. And remember, the people that are closest to you, even your young children, are affected by your condition; share your knowledge of FM with them, and allow them to ventilate their own feelings. You might be surprised at all the support you have! You do NOT need to go through this alone.
Please read the other Random Thoughts of these great writers: tinasamuels,mom2tyzick,debbie26,westerbear,fallyn96,mimi369,marytara,mom2daniel and aliventiasylum!
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Epinions.com ID:
fiona32
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Member: Marty Lentz
Location: Michigan
Reviews written: 22
Trusted by: 57 members
About Me:
Former Alcohol-Drug Abuse/Family Therapist, divorced, live in W. Michigan - love grandchildren and Gateway!!
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