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Sunday, September 02, 2012


Fibromyalgia (FMS) is not contagious or terminal. It is a chronic pain illness characterized by widespread musculoskeletal aches, pain, and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time. Fibromyalgia is seen in 3% to 6% of the general population, and is most commonly diagnosed in individuals between the ages of 20 and 50. Fibromyalgia isn't progressive and generally doesn't lead to other conditions or diseases. It can, however, cause pain, depression and lack of sleep. These problems can then interfere with your ability to work at home or on the job, or maintain close family or personal relationships. The frustration of dealing with the often-misunderstood condition also can be a complication of the condition. Fibromyalgia is confusing and often a misunderstood condition. Because its symptoms are quite common and laboratory tests are generally normal, people with fibromyalgia were once told that their condition was "all in their head." I had a doctor tell me that to my face. I was so frustrated and in tears and he told me that and made an appointment for me with an expensive counselor. I cancelled that counseling appointment and found another doctor. My current doctor openly acknowledged that FMS was a real illness and this gave me a lot of emotional relief.

Medical studies have proven that fibromyalgia does indeed exist. In 1990, the American College of Rheumatology, the official body of doctors who treat arthritis and related conditions, finally legitimized fibromyalgia in the medical community by presenting its criteria for diagnosing it. I have been seen by a rheumatologist and a neurologist and had a lot of tests done over the years that prove my FMS isn’t something else.

Fibromyalgia can start as a result of some emotional or physical trauma or major surgery, but there is currently no known strong correlation between any specific type of trigger and the subsequent initiation of fibromyalgia. Symptoms can have a slow onset, and many patients have mild symptoms beginning in childhood, such as growing pains. I had severe growing pains while growing up and would cry and ask for aspirin a lot of nights.

Symptoms are often aggravated by unrelated illness or changes in the weather. They can become more tolerable or less tolerable throughout daily or yearly cycles; however, many people with fibromyalgia find that, at least some of the time, the condition prevents them from performing normal activities such as driving a car or walking up stairs. The following factors are said to temporarily increase the suffering of patients:
Cold weather, especially when damp
Changes in atmospheric pressure (such as with the onset of a cold front)
Malnutrition, hunger, or starvation
Physical activity
Lack of deep (REM) sleep
Increase of stress


Widespread pain. The pain of FMS is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FMS pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain. To me it’s like having a toothache in your muscles or the flu-like aches. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. I have neuropathy in my legs and feet. 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. The pain generally persists for months at a time and is often accompanied by stiffness.

Fatigue and sleep disturbances. FMS is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically. I call it “hitting my brick wall”. There have been times when I’ve had to pull over into a parking lot and lay down in my car until I could get enough energy to drive home.

Irritable bowel syndrome (IBS). Constipation, diarrhea, abdominal pain and bloating.

Headaches and facial pain. Many people who have fibromyalgia also have headaches and facial pain that may be related to tenderness or stiffness in their neck and shoulders.

Heightened sensitivity. It's common for people with fibromyalgia to report being sensitive to odors, noises, bright lights and touch.

Vision problems. From hypersensitive eyes (to bright lights) to blurry vision that doesn’t seem to be helped with your glasses and it comes and goes.


Numbness or tingling sensations in the hands and feet (paresthesia)
Difficulty concentrating, memory impairment (fibro fog)

Mood changes

Chest pain

Irritable bladder

Dry eyes, skin and mouth

Painful menstrual periods



Symptomatic hypoglycemia


The specific cause of fibromyalgia is unknown. It is called an autoimmune syndrome. Most researchers agree that FMS is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FMS patient experiences pain amplification due to abnormal sensory processing in the central nervous system. Doctors believe a number of factors may contribute. These factors may include:

Inherited. Recent studies show that genetic factors may predispose individuals to a genetic susceptibility to FMS. For some, the onset of FMS is slow; however, in a large percentage of patients the onset is triggered by an illness or injury that causes trauma to the body.

Injury. An injury or trauma, particularly in the upper spinal region, may trigger the development of fibromyalgia in some people. Some think it could be emotional trauma that triggers it.

Chemical changes in the brain. Some people with fibromyalgia appear to have alterations in the regulation of certain brain chemicals called neurotransmitters. This may be particularly true of serotonin — which is linked to depression, migraines and gastrointestinal distress — and substance P, a brain chemical associated with pain, stress and anxiety, as well as depression.
Sleep disturbances. Some researchers theorize that disturbed sleep patterns may be a cause rather than just a symptom of fibromyalgia.

Infection. Some researchers believe that a viral or bacterial infection may trigger fibromyalgia.

Abnormalities of the autonomic (sympathetic) nervous system. Your autonomic nervous system is divided into the sympathetic and parasympathetic systems. Your sympathetic nervous system releases norepinephrine and influences the release of epinephrine from the adrenal gland. The sympathetic nervous system also controls bodily functions that you don't consciously control, such as heart rate, blood vessel contraction, sweating, salivary flow and intestinal movements.

Changes in muscle metabolism. For example, deconditioning and decreased blood flow may contribute to decreased strength and fatigue. Differences in metabolism and abnormalities in the hormonal substance that influences the activity of nerves (neuroendocrine) may play a role.

Sometimes I think I inherited it. We think an aunt of ours had it. My sisters have it and I have it. I had terrible growing pains growing up. I had a birth defect that caused me to have to have major surgery at 11. This was a physical and emotional trauma that triggered my first severe Depression. As a teenager I often took days off from school due to back pain and stress. At 16 I had another bout of severe Depression that lasted until I was 18. I had several bouts of severe Depression and Anxiety Attacks off and on since then. The worst time was about 13 years ago and it lasted a couple of years. I also had severely painful periods and got a complete hysterectomy when I was in my twenties. I was on Premarin but then it stopped working and I was having unbearable hot flashes 24/7. I also began having severe Hypoglycemia. Although the lab tests show fairly normal levels of sugar, I crash so bad that I’ve passed out at times and once was taken by ambulance to the hospital with a seizure. Sometimes food controls it but occasionally it doesn’t. I tried the bio-identical hormone treatment and things got worse instead of better. It was one of the worst things I ever tried. So, what caused my FMS? Was it inherited? Have I had it since I was a child? Was it triggered by my surgery at 11 yrs old? Was it triggered by the bouts of Depression? Was it hormonal? How does hypglycemia come into it? Maybe it's something that I was born with and it would have happened to me no matter what else was going on in my life.
I manage my symptoms with medication and I try to keep my life simple and accommodate my limitations as much as I can. I avoid stress as much as I possibly can but there is a lot that I have no control over.

One of the best things I've ever done was physical therapy. After the physical therapist, I joined a gym and got involved in water aerobics. My pain was highly increased for the first 2 months of doing water aerobics. I started very slow (as per my physical therapist). I worked up from 10 mins in the pool to finally being able to work out steadily for 1 hour in the pool. I go between 2-3 times per week for 30-60 mins of workout. I made myself continue to go despite my pain and eventually my body got used to it and my pain settled back down to normal. For a couple of weeks the pool was being serviced so I took the senior low impact aerobics class. It about killed me. But knowing how long it took me to get used to the pool work, I decided I needed to continue doing the low impact aerobics. I try to go once a week and do the pool the other times. Again it took my body about 2 months before the pain settled down back to normal. I also started a water zumba class. I can only do it for 30 mins but I keep going. Anything new or different causes more pain and stiffness but my body will get used to it if I keep doing it. It evidently works different muscles or something so changing it up is difficult. I know exercise increases my pain and stiffness but it makes me healthier and is worth the pain. My expectations are not to run a mile or lift 100 lbs or become a star athlete. I don't want big muscles. But I do need to keep moving and be more active and capable of activity. It does make me feel better physically and mentally. As I said, it's one of the hardest things I've done but one of the best things I've done. Don't expect your pain level to go down. It won't. In fact the pain goes up big time when you first get started and will continue like that for awhile but it won't last forever and it is worth it in the long run. Don't start too fast. My physical therapist warned me to go very slowly so I started working out in the pool for only 10 mins. Then I moved to 12 mins. Then 15 mins, then 20 mins, then 25, then 30, etc. So go very slowly.

A bad day for me now is having no energy. I don’t feel like I can even get out of bed. I won’t even turn on the TV. Nothing interests me. Sometimes it’s accompanied with shaking and always with pain. My body aches like a toothache and nothing helps. I’ve tried hot tub, heating pad, ointments, vitamins, acupuncture, chiropractior, etc and nothing homeopathic touches the pain. Sometimes it’s so bad that I can’t even read. I can’t stand to do anything but lie quietly.

When I’m having a bad day I try to do everything I can to help myself. I have my devotions. I rest a lot for at least a full day. I take my vitamins and meds. I eat. I try to make myself do something that is a controlled exercise like stretches, a very short walk, just anything easy. One of my fears is that I will fall back into severe Depression so I really push myself to do what I can even though I don’t feel like it.

On the 2nd day I will make myself get up and do something even if it’s just to go visit someone or walk through a shop, go to the library, whatever. Just a short something so that I get out and move around a little. I make sure I do my devotions, rest, take my vitamins and meds. The 3rd day I try to do a little more. Sometimes this helps and by the 3rd day I’m more normal and sometimes it takes a week or more. I’m still not EVER normal compared to other women my age. I look stout and fine and people don’t have a clue how very fragile my balance is. I tend to overdo on my good days. On days when I feel normal and healthy I try to get as much done as possible because who knows when I will be able again. Sometimes I think overdoing it triggers another bout.

Sometimes I can be feeling normal and doing my activities and routines when suddenly I'll hit a brick wall. All of the sudden I have no energy and all I can think about is getting home and laying down. I have no energy. It can be that sudden. I'll be out shopping and hit my brick wall and it's all I can do to check out, get in the car, drive home and unload the car before I go to bed.

Keep in mind that just because someone doesn't "look disabled" doesn't mean they aren't. You don't know what their disability is. Just because I'm not in a wheelchair or having to use a walker doesn't mean that I'm not disabled. You may see me working out in the pool and think I'm not disabled. You don't know that when I go home it takes me the rest of the day in bed to recuperate. So don't judge people harshly. You don't want to walk in my shoes.

1 comment:

Cheryl said...

Hi Sharon,

I'm so sorry to hear of your struggles. It must be awful to experience such a range of symptoms at times. You have always been an inspiration to me with all of your wonderful organizational skills and the gift of scrapbooking that you have, etc. Now you have inspired me more...You do all that while struggling with your health at times!

I think that I'll read up on this disorder more because I seem to have symptoms that are similar at times...so thank you for this informative post.

Praying that you can find comfort during your bouts of pain.

With Hope,

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