Saturday, May 12, 2012

May 12, 2012 Fibromyalgia Awareness Day! My personal story!

I am a fibromyalgia and chronic pain sufferer and survivor!  I suffer from this invisible disease and yet through Jesus Christ (who suffered so much more for me) I am a survivor through Him!  How many of you reading this article know very little to nothing about fibromyalgia?  And I don't mean the "Lyrica" commercials on tv because they don't show the devasting effects that Fibro has on most of us.  Maybe you have a loved one or a friend with the disease and  are aware because of them?  Well hopefully this blog entry will make you more aware of the invisible disease and also give you some suggestions for helping or being a good comforting friend to someone with the disease.

I am wearing this Unapologetically Purple ribbon on my profile throughout the month of May.  Maybe longer.  I hope this will get my friends to ask about the ribbon.  The purple ribbon is our ribbon for Fibromyalgia.  I was diagnosed 17 years ago with fibromyalgia and there is never a day that I am totally pain free.  I had to give up a teaching career which I loved and go out on disability.  So for the past 17 years I have worked on taking it day by day.  I have hobbies that I work on and my stretching program and keeping our family healthy according to my dietary needs.  I enjoy scrapbooking, birding, beach combing, walking, crafts, cooking and baking.  My husband who recently retired from his job left two years early to take care of me as I have progressed with new symptoms which I need help managing.  He's been home with me for one year now and I know the Lord planned this as no other time have I had this condition as poorly as I have it now.

Fibromyalgia might not be so bad if there weren't so many overlapping conditions.  I have many.  These are the overlapping conditions that I have:

Anxiety Disorders

Anxiety Disorders such as panic disorder described above, are far more common than most people think. In fact, recent estimates from the National Institute of Mental Health (NIMH) show they are the most common mental illness in the United States.
Approximately 40 million American adults ages 18 and older—or 18.1 percent of the adult population—suffer from an anxiety disorder. Anxiety disorders are a unique group of illnesses marked by persistent, irrational, uncontrollable anxiety. These include generalized anxiety disorder, obsessive-compulsive disorder (OCD), panic disorder, posttraumatic stress disorder, social phobia and specific phobias.
Researchers have found that anxiety disorders and chronic pain often occur together. In some patients, the stress associated with living with chronic pain may exacerbate conditions such as anxiety disorders and depression. Feelings of helplessness, loss of control and interference with daily activities from chronic pain can trigger mental health disorders in some pain patients. In some cases, the symptoms of an anxiety disorder may be similar to those of chronic pain and go undiagnosed. It is important to get a correct diagnosis since anxiety disorders are treatable.
The Most Common Anxiety Disorders:
Generalized Anxiety Disorder (GAD) involves excessive and uncontrollable worry about everyday things, such as health, money or work. It is accompanied by physical symptoms such as restlessness, irritability, muscle tension, fatigue and difficulty sleeping or concentrating.
Obsessive-Compulsive Disorder (OCD) entails persistent, recurring thoughts (obsessions) that reflect exaggerated anxiety or fears. Someone with OCD often will practice repetitive behaviors or rituals (compulsions). For instance, obsessing about germs may lead someone with OCD to compulsively washing hands—perhaps 50 times or more per day.
Panic Disorder includes severe attacks of terror or sudden rushes of intense anxiety and discomfort. Symptoms can mimic those found in heart disease, respiratory problems or thyroid problems, and individuals often fear they are dying, having a heart attack or about to faint. The symptoms experienced during a panic attack are real and overwhelming, but not life threatening.
Posttraumatic Stress Disorder (PTSD) can follow exposure to a traumatic event, such as a car accident, rape, a terrorist attack or other violence. Symptoms include reliving the traumatic event, avoidance, detachment or difficulty sleeping and concentrating. Though it is commonly associated with veterans, any traumatic event can trigger PTSD.
Social Anxiety Disorder (SAD) is characterized by extreme anxiety about being judged by others or behaving in a way that might cause embarrassment or ridicule. People who have SAD have what feels like exaggerated stage fright all the time. SAD is also called social phobia.
Specific phobias are intense fear reactions that lead a person to avoid specific objects, places or situations, such as flying, heights or highway driving. The level of fear is excessive and unreasonable. Although the person with a phobia recognizes the fear as being irrational, even simply thinking about it can cause extreme anxiety.
Visit http://www.adaa.org for more information or contact ADAA at 240-485-1001.

I personally have all of the above and see a psychiatrist once or more a month for help and medication for them.    

Back Pain

Back Pain Causes of mechanical back pain (BP) generally are attributed to an acute traumatic event, but they may also include cumulative trauma.  The severity of an acute traumatic event varies widely, from twisting one's back to being involved in a motor vehicle collision.  Mechanical BP due to cumulative trauma tends to occur more commonly in the workplace.

The pathophysiology of mechanical BP remains complex and multifaceted. Multiple anatomic structures and elements of the spine (eg, bones, ligaments, tendons, disks, muscle) are all suspected to have a role. Many of these components of the spine have sensory innervation that can generate nociceptive (a sensory receptor that responds to pain) signals representing responses to tissue-damaging stimuli. Other causes could be neuropathic (dysfunction of the nervous system--e.g, sciatica). Most chronic BP cases most likely involve mixed nociceptive and neuropathic etiologies.


The concept of a biomechanical degenerative spiral has an appealing quality and is gaining wider acceptance. This concept postulates the breakdown of the annular fibers and allows PLA2 and glutamate, and possibly other as-yet unknown compounds, to leak into the epidural space. The weakened vertebra and disk segment become more susceptible to vibration and physical overload, resulting in compression and stimulating release of substance P. Substance P, in turn, stimulates histamine and leukotriene release, leading to an altering of nerve impulse transmission. The neurons become sensitized further to mechanical stimulation, possibly causing ischemia, which attracts polymorphonuclear cells and monocytes to areas that facilitate further disk degeneration and produce more pain.


The National Pain Foundation – http://www.nationalpainfoundation.org/cat/862/back-and-neck




Depression

Depression in fibromyalgia is a controversial topic. In support of the contention that fibromyalgia is not a psychiatric illness, some authors believe that no correlation exists between fibromyalgia symptoms and psychological factors; others have determined that fibromyalgia is not a psychiatric disorder. The depression associated with fibromyalgia is believed to result from the pain, sleep deprivation, and dysfunction.
Depression in fibromyalgia may be treated with a regimen that includes nonpharmaceuticals. Antidepressants may help, but the clinician also should address other symptoms, such as fatigue or pain. Modifying diet and practicing good sleep hygiene are crucial. Starting a rehabilitation exercise program also is important. Some authors suggest that behavioral modification techniques and stress management also should be employed.
 
For further information, please see http://fmscommunity.org/fibro.htm
The National Institute of Mental Health (NIMH) – http://www.nimh.nih.gov/health/topics/depression/index.shtml


Female Urethral Syndrome

Female Urethral Syndrome Urethral syndrome is present in one quarter of patients presenting with lower urinary tract symptoms.
Urethral syndrome, or frequency-dysuria syndrome, is characterized by frequency, dysuria and suprapubic discomfort without any objective finding of urological abnormalities or infection.  Dysuria or constant suprapubic discomfort is partially relieved by voiding. Patients also may report of difficulty in starting urination, slow stream, and a feeling of incomplete emptying of the bladder. Most patients are women aged 30-50 years. Vaginal discharge and vaginal lesions must be excluded. History is important, and diagnosis is by exclusion.
In urethral syndrome, the etiology is unknown. Historically, urethral stenosis (narrowing) was thought to be the cause of urethral syndrome. Currently theorized etiologies include hormonal imbalances, inflammation of the "female prostate" (Skene glands and the paraurethral glands), a reaction to certain foods, environmental chemicals (eg, douches, bubble bath, soaps, contraceptive gels, condoms), hypersensitivity following urinary tract infection, and traumatic sexual intercourse. Regardless of the initial pain-causing event, the patient has both involuntary spasms and voluntary tightening of the pelvic musculature during the painful episode, which, in addition to any residual irritant or reinjury, starts a vicious circle of worsening dysfunction of the pelvic floor musculature. Often, the original cause of the pain has healed, but the pelvic floor dysfunction persists and is worsened by patient anxiety and frustration with the condition.


Irritable Bowel Syndrome (IBS)

Irritable Bowel Syndrome (IBS) is the most common functional gastrointestinal (GI) disorder with worldwide prevalence rates ranging from 9-23 percent and U.S. rates generally in the area of 10-15 percent. Functional disorders are conditions where there is an absence of structural or biochemical abnormalities on diagnostic tests, which could explain symptoms.
IBS is best understood as a long-term or recurrent (chronic) disorder of gastrointestinal functioning. It is characterized by multiple symptoms involving a disturbance in the regulation of bowel function that results in unusual sensitivity and muscle activity. These disturbances can produce symptoms of abdominal pain or discomfort, bloating or a sense of gaseousness, and altered bowel habits (diarrhea and/or constipation).
Abdominal pain and/or discomfort is the key symptom of IBS and is often relieved with the passing of a bowel movement (defecation). There are many causes for abdominal pain, but in IBS, the pain or discomfort is associated with a change in bowel habits. While everyone suffers from an occasional bowel disturbance, for those with IBS the symptoms are more severe, or occur more often either continuously or off and on. IBS affects men and women of all ages.
Symptoms can vary and sometimes seem contradictory, such as alternating diarrhea and constipation. The intensity and location of abdominal pain in IBS are highly variable, even at different times within a single person. The symptoms of IBS are produced by abnormal functioning of the nerves and muscles of the bowel. In IBS there is no evidence of an organic disease (where structural or biochemical abnormalities are found), yet, something—a "dysregulation" between the brain, the gut, and the central nervous system—causes the bowel to become "irritated," or overly sensitive to stimuli. Symptoms may occur even in response to normal events, such as eating a meal.
Upper gastrointestinal symptoms are commonly reported by IBS patients with 25 percent to 50 percent of patients reporting heartburn, nausea, abdominal fullness, and bloating. In addition, a significant number report intermittent upper abdominal discomfort or pain (dyspepsia).
Many IBS patients also report non-gastrointestinal symptoms such as fatigue, muscle pain, sleep disturbances, and sexual dysfunction. Up to 66 percent of IBS patients report non-gastrointestinal symptoms compared to less than 15 percent of healthy individuals. These non-gastrointestinal symptoms may be due to IBS coexistence with another disease or condition such as fibromyalgia, chronic fatigue syndrome, and interstitial cystitis. For example, the estimated prevalence of IBS in patients with fibromyalgia (FMS) is 30 percent or more with similar findings of FMS in patients with irritable bowel syndrome.

International Foundation for Functional Gastrointestinal Disorders– http://www.aboutibs.org/
Find out more by going to www.iffgd.org/ or www.aboutibs.org/; or call toll-free at 1-888-964-2001.

Lumbar Denegerative Disk Disease



Lumbar Denegerative Disk Disease As humans age, they endure both macrotraumas and microtraumas and undergo changes in posture that alter and redistribute biomechanical forces unevenly on the lumbar spine. Natural progression of degeneration of the lumbar segment with motion proceeds with characteristic anatomic, biomechanical, radiologic, and clinical findings in lumbar degenerative disk disease (LDDD).
 
For more information, please see http://www.emedicine.com/PMR/topic67.htm

Osteoarthritis (OA)

Osteoarthritis (OA) is a chronic disease process affecting synovial joints, particularly large weight-bearing joints. OA is particularly common in older patients but can occur in younger patients either through a genetic mechanism or, more commonly, because of previous joint trauma.
Joints can be classified as synovial, fibrous, or combination joints, based on the presence or absence of a synovial membrane and the amount of motion that occurs in the joint. Normal synovial joints allow a significant amount of motion along their extremely smooth articular surface. These joints are comprised of a synovial membrane, articular or hyaline cartilage, subchondral bone, synovial fluid, and a joint capsule.
Although traditional teaching prescribes that OA affects primarily the articular cartilage of synovial joints, pathophysiologic changes also occur in the synovial fluid, as well as in the underlying (subchondral) bone and overlying joint capsule. The affected cartilage initially develops small tears, known as fibrillations, at the articular surface, followed by larger tears; the cartilage eventually fragments off into joints. The cartilage-forming cells (ie, chondrocytes) replicate in an attempt to keep up with the cartilage loss; however, they eventually are unable to do so, and the underlying bone becomes exposed because of gross areas of bone denuded of cartilage.
The osteoarthritic joint is characterized by decreased concentration of hyaluronic acid because of reduced production by synoviocytes and increased water content because of inflammation, particularly during later stages of the disease.
Pain is usually of insidious onset, is generally described as aching or throbbing, and may result from changes that have occurred over the last 15-20 years. Most often, the pain is worse with activity involving the affected joint and is initially relieved with rest; eventually pain occurs even at rest. Since cartilage itself is not innervated, the pain is presumed to be from a combination of mechanisms, including (1) osteophytic periosteal elevation, (2) vascular congestion of subchondral bone leading to increased intraosseous pressure, (3) synovitis with activation of synovial membrane nociceptors, (4) fatigue of muscles that cross the joint, and (5) overall joint contracture.
In addition to the underlying pathophysiologic changes described above, overall, the joint may undergo mechanical deformation with resultant malalignment and instability. Alternatively, the joint can ankylose.

For more information, please see http://www.emedicine.com/PMR/topic93.htm

Osteoarthritis – – Mayo Clinic – http://www.mayoclinic.com/health/osteoarthritis/DS00019


Thyroid Dysfunction

Hypothyroidism (underactive thyroid) is a condition in which your thyroid gland doesn't produce enough of certain important hormones.  This condition is also called Graves
Women, especially those older than 50, are more likely to have hypothyroidism. Hypothyroidism upsets the normal balance of chemical reactions in your body. It seldom causes symptoms in the early stages,
but over time, untreated hypothyroidism can cause a number of health problems, such as obesity, joint pain, infertility and heart disease.
The signs and symptoms of hypothyroidism vary widely, depending on the severity of the hormone deficiency. But in general, any problems you do have tend to develop slowly, often over a number of years.  At first, you may barely notice the symptoms of hypothyroidism, such as fatigue and sluggishness, or you may simply attribute them to getting older. But as your metabolism continues to slow, you may develop more obvious signs and symptoms. Hypothyroidism symptom may include:
  • Fatigue
  • Sluggishness
  • Increased sensitivity to cold
  • Constipation
  • Pale, dry skin
  • A puffy face
  • Hoarse voice
  • An elevated blood cholesterol level
  • Unexplained weight gain
  • Muscle aches, tenderness and stiffness
  • Muscle weakness
  • Pain, stiffness or swelling in your joints
  • Brittle fingernails and hair
  • Heavier than normal menstrual periods
  • Depression

When hypothyroidism isn't treated, signs and symptoms can gradually become more severe. Constant stimulation of your thyroid to release more hormones may lead to an enlarged thyroid (goiter). In addition, you may become more forgetful, your thought processes may slow or you may feel depressed.

For more information, please see http://www.mayoclinic.com/health/hypothyroidism

*Much thanks to the NFMCPA for the above information.*

Resources for Fibromyalgia & Education

 National Council on Independent Living

Advocates for people with disabilities who strive to live independently
1710 Rhode Island Ave. NW
5th Floor
Washington, DC 20036
(877) 525-3400


Bureau of Primary Health Care
Website provides referrals to health care providers across the country
U.S. Department of Health and Human Services
Health Resources and Services Administration
Parklawn Building
5600 Fishers Lane
Rockville, Maryland 20857
(888) ASK-HRSA
http://ask.hrsa.gov/pc



Patient Advocate Foundation
A pharmaceutical co-payment assistance program for insured patients suffering with chronic pain.(866) 512-3861
www.copays.org/
 
 
Needy Meds
 
Partnership for Prescription Assistance
Search for prescription assistance programs by state
(888) 4PPA - NOW
 
Lilly Cares
Program of Eli Lilly to help indigent patients without insurance. Requires no fees.
(800) 545-6962
 
Together RX Access
Patient assistance program for those who do not have drug coverage. Amount of assistance is dependent on total household income.
(800) 444-4106
 
Astra Zeneca
Foundation Patient Assistance Program
Provides medications free to qualifying
(800) 424-3727
 
Bridges to Access
GlaxoSmithKline’s patient assistance program for non-oncology medicines provides GSK prescription medicines to eligible low-income patients without prescription drug benefits.
(866) PATIENT
 
The Medicine Program
(866) 694-3893
 
Novartis
Patient assistance program
(800) 277-2254
 
RxHope
(877) 979-4673
 
Helping Patients
 
Lawson Healthcare Foundation
(888) 380-6337
 
Free Drug Card Program

Mental Health & Counseling

National Institute of Mental Health
6001 Executive Boulevard
Room 8184, MSC 9663
Bethesda, MD 20892-9663
(866) 615-6464

American Psychiatric Association
1000 Wilson Boulevard, Suite 1825
Arlington, VA 22209-3901
(703) 907-7300

American Psychological Association
Does not offer referrals
750 First Street, NE
Washington, DC 20002-4242

National Mental Health Association
2000 Beavregard St.
6th Floor
Alexandria, VA 22311
(800) 969-NMHA

National Suicide Prevention Lifeline
1-800-273-TALK (8255)

Pain Management

American Academy of Pain Management
13947 Mono Way, Suite A
Sonora, CA 95370
(209) 533-9744

American Academy of Pain Medicine

American Pain Foundation
201 N. Charles St., Suite 710
Baltimore, MD 21201
(888) 615-7246

North American Spine Society
22 Calendar Court, 2nd Floor
LaGrange, IL 60525
(877) 774-6337

Pain Treatment Topics
202 Shermer Road
Glenview, IL 60025
(847) 724-0862
 Disclaimer:  Please consult with your physician for medical care and treatment. The information in this blog is not a substitute for professional medical advice.
I know this has been a lengthy entry but if you are seeking help for yourself or for a loved one I hope that some if not all of this information might be helpful.   Another article that I wrote that you might be interested in reading is "My Name is Fibromyalgia."   

And finally ...  God knows all about my disease and He gives me exactly what He knows I can handle.  I trust in Him each day, each hour!  Today I select this passage:  Matthew 10:29, 31 "Are not two sparrows sold for a copper coin?  And not one of them falls to the ground apart from Your Father's will...  Do not fear, therefore; you are of more value than many sparrows."  



13 comments:

Real Life Deals said...

I'm one of those who no very little about this disease. Thanks for being willing to share your story and raise awareness. Praying today that you will have a better day than you have been having this week!

Clancy Cash Harrison MS, RD, LDN said...

Thank you for this post. It is very insightful. I hope you are feeling better today. You are in my thoughts and prayers.

John Mullin said...

As Carolyn's husband, I see these problems and pains every day. For the family of the person afflicted with this disease the daily thought is "I wish there was something more I could do to stop the suffering"

Teressa Morris said...

My 17-year-old son has GAD and chronic pain. Doctors tend to assume he is making up his systems when they see that he is under psychiatric care. Thank you so much for bringing light to the problems of people with chronic illness. God Bless You and Your Family.

Debbie McConnell said...

I have heard of this disease but knew little of it. Thanks for sharing with us. Hoping you're feeling better today.

Zack said...

Great post. So much good information. Thank you for enlightening me about this disease. Praying for you.

Diane said...

Great post Carolyn! So many people assume because a person might have a smile on their face that they are not suffering! There needs to be more awareness of Fibro and other similar diseases!

Debi@The Spring Mount 6 Pack said...

Thank you for sharing. I have this and was diagnosed when I was 17, so about 18 years ago. I am in constant chronic pain all the time and because I am psycho about telling anything personal about myself(like feelings and emotional) I rarely say anything. But the pain can be the worst thing in the world and it disrupts everything. I have not have a moment of pain free since I was 17.

Dale Roach said...

I am really thankful for this article. It is a great resource of education and connecting me with some very valuable information. Please know that my prayers are with you and your family. Thank you for sharing your heart and knowledge.

Mimi B said...

Wow Carolyn! I had no idea there were so many overlapping issues. I think depression can definitely stem from living with Fibro if it's not even a direct sub-issue. I can't imagine having to live with all of this. Lord bless your hubby for being your caretaker. God will be your strength in those days of weakness. <3

Carolyn M said...

Thank you all for your comments... very meaningful to me as your friend and co-blogger as I am not afraid to share from my heart and head about illnesses that I have. Thank you for sharing your understanding of the topic. Before the Lyrica commercials Fibro was pretty much laughed at in the world. "If you can't see it, it must not exist!" I was fortunate to have a very sharp Dr. now almost 18 years ago for me with this disease. I have been through the ringer though with a bad rheumatologist who seems too old to be working in the field anymore. Finally with the help of my Dr. I was able to get in to see this Rheumatologist who saw me last week (1st appointment) to start treatement with me. I will see her again in two weeks for a follow-up appointment on all the blood work that was done on me and for the therapies she wants to do with me. I spend a lot of my time on my exercise ball... doing a lot of stretching and I have a stretch rope that I step on and stretch as well. Thank you again! AND don't I have the most incredible husband who not only works with me as a caregiver but he is my encourager and everything you could possibly want in a husband. I have that guy who is one in a gazillion!! Love you John!

ruthhill74 said...

Carolyn,

You help to remind me that my lot in life is not so bad. I can't imagine having to deal with all this. God bless you!

Petula Wright said...

Sigh... is what I think when I read your post. I so truly understand and feel for you regarding the "additional" issues that I don't have to deal with. Leaving life with these illnesses is a challenge, but like you said it's day to day. Great post; very informative.

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