Friday, August 29, 2008


I think I'm finally ready to write this post. Maybe. We'll see how far I get. I'm not really sure where to start.

Things have been going pretty darn good lately considering the circumstances. Money is okay, my husband and I are mostly ok. My mood is okay. Hailey's okay.

I went to see the rheumatologist on the 20th. I was very nervous to go, since she's a specialist and I haven't had good experiences with specialists in the past. And there were nothing but old people all around, so that was odd...I felt like I shouldn't be there. But the staff at the office and the dr. herself were SO incredibly nice. They put me right at ease. I've finally got a diagnosis. Basically I have a couple problems. For one, I have a crooked spine. It's sort of an S shape, curving from side to side. That explains some of my upper back pain. Second of all, the big one. She agreed with my dr. that I do in fact have FMS or Fibromyalgia Syndrome. I don't know why I haven't wanted to write about this. I have very mixed feelings about everything. I'm relieved to know what's wrong with me. We have thought for years that I have this because my aunt has it...but I don't have the pain points you're supposed to have. When I asked the rheumatologist about this she explained that more and more drs these days are realizing you don't HAVE to have these pain points to have FMS. You can have none of them and still have it. So I'm releived to know I don't have something more serious like MS, and I'm relieved to finally have a name for what's wrong with me...I'm not just crazy.

But I'm also...I don't know, weirded out by all this. They don't know what causes FMS. Just a few years ago some people didn't even believe it was a real disease or syndrome or what have you. That it was all in a person's head. But it's not. It's real. And it totally sucks. And there's nothing they can do for it. And I'll have it for the rest of my life. And it will probably just get worse. SO...that sucks.

Luckily my Lexapro that I've been on for a few weeks now is really helping my mood. I'm much happier than I have been in a long time. Even when things aren't going right or I feel like crap, I can still crack a joke. I feel more like my old silly, joking self. My mom and I are being goofy again. I love making her laugh and I haven't been able to do that for so long. I think my husband has really noticed the difference in my mood. For the most part he's been great, acting like he likes me again LOL and being more understanding when I'm not having a good day. I also don't feel so overwhelmed with everything anymore. I feel like I can handle all the challenges life throws my way without getting so worked up. My anxiety is MUCH better. My OCD is still a work in progress. Since starting Lexapro I don't get so upset about dirt and messes as I did before. I love my cat again. If I don't get a chore done one night, I just do it the next. I still want a clean house, I still have that feeling of needing things organized, and I still have my odd quirks that go along with OCD...but at least it's not ruling my life anymore to the point of driving my husband insane.

I'm still having the sleep study done at the recommendation of the rheumatologist. Since that appointment I've noticed just how horrible I sleep. I wake up at least 5 times a night and I toss and turn the rest of the night. I've been trying to get to bed a lot earlier and it seems to be helping a little.

Now I just have to figure out how to deal with this and live with it. It's a work in progress but I think I'm doing ok so far. Considering it's not the greatest diagnosis, I've got a pretty positive outlook on life now. Some days are better than others of course, but all in all I think everything's going to be okay. I've just got to figure out how to deal with this and keep on living.

That's really all I feel like writing right now. I just wanted to get it out there that I am doing better, everything's ok, I'm having fun living life and enjoying my family again.

Some info on FMS...

The main fibromyalgia symptoms include deep muscle pain, painful trigger points or tender points, and morning stiffness. Other major symptoms of fibromyalgia include sleep disorders, fatigue, and anxiety. In order to make an accurate diagnosis, your doctor will need to review your symptoms and signs of fibromyalgia.

What are the common symptoms of fibromyalgia?

Common symptoms of fibromyalgia, also known as fibromyalgia syndrome or FMS, may include:

  • Anxiety
  • Concentration and memory problems -- known as fibro fog
  • Depression
  • Digestive disorders
  • Discoloration of hands and feet (Raynaud's phenomenon)
  • Dryness in mouth, nose, and eyes
  • Fatigue
  • Headaches
  • Irritable bowel syndrome
  • Morning stiffness
  • Pain
  • Painful menstrual cramps
  • Restless legs syndrome
  • Sleep problems
  • Swelling, numbness, and tingling in hands, arms, feet, and legs
  • Trigger points
  • Urinary symptoms

Is pain the most common symptom of fibromyalgia?

Yes. Widespread pain is characteristic of more than 97%of patients with fibromyalgia. In fact, pain is usually what forces a person with fibromyalgia to see his or her doctor.

Unlike the joint pain of osteoarthritis, fibromyalgia pain is felt over the entire body. It is a deep, sharp, dull, throbbing, or aching pain that's felt in the muscles, tendons, and ligaments around the joints. The Arthritis Foundation describes the muscle and tissue pain as tender, aching, throbbing, sore, burning, and gnawing.

For some people with fibromyalgia, the pain comes and goes. The pain also seems to travel throughout the body.

Is fatigue a fibromyalgia symptom?

Next to pain and the tender trigger points, fatigue is a major complaint. Fatigue in fibromyalgia refers to a lingering tiredness that is more constant and limiting than what we would usually expect. Some patients complain of being tired even when they should feel rested, such as when they've had enough sleep. Some patients report the fatigue of fibromyalgia as being similar to symptoms of flu. Some compare it to how it feels after working long hours and missing a lot of sleep.

With fibromyalgia, you may feel:

  • Fatigue on arising in the morning
  • Fatigue after mild activity such as grocery shopping or cooking dinner
  • Too fatigued to start a project such as folding clothes or ironing
  • Too fatigued to exercise
  • More fatigued after exercise
  • Too fatigued for sex
  • Too fatigued to function adequately at work

Are sleep disturbances a common symptom of fibromyalgia?

Sleep disturbances are common in the majority of people with fibromyalgia. While people with fibromyalgia may not have difficulty falling asleep, their sleep is light and easily disturbed. Many awaken in the morning feeling exhausted and unrefreshed. These sleep disturbances may help create a constant state of fatigue.

During sleep, individuals with fibromyalgia are constantly interrupted by bursts of brain activity similar to the activity that occurs in the brain when they are awake. Tests in sleep labs done on individuals with fibromyalgia have shown that people with fibromyalgia experience interruptions in deep sleep. These interruptions limit the amount of time they spend in deep sleep. As a result, their body is unable to rejuvenate itself.

Does morning stiffness affect many fibromyalgia patients?

Studies show that more than 75% of people diagnosed with fibromyalgia feel stiffness in the morning on arising. The stiffness is extensive -- affecting the muscles and joints of the back, arms, and legs. It makes them feel the need to "loosen up" after getting out of bed before beginning their usual activities.

Some people with fibromyalgia report that the morning stiffness may last only a few minutes, but in general, it is usually very noticeable for more than 15 to 20 minutes each day. In some cases, though, the stiffness lasts for hours, and in others it seems to be present all day.

While most people feel stiff when they first wake up, the stiffness associated with fibromyalgia is much more than simply a minor aching. In fact, people with fibromyalgia have the same feeling of stiffness in the morning that people feel with many types of arthritis, especially rheumatoid or inflammatory arthritis.

Is depression a fibromyalgia symptom?

Depression is a key symptom for most people with fibromyalgia. Approximately one out of every four patients with fibromyalgia has current major depression. And one out of every two people with fibromyalgia has a lifetime history of depression.

Stress from the constant pain and fatigue can cause anxiety. Also, chronic pain can result in a person being less active and becoming more withdrawn. This, in turn, can lead to depression.

It is also possible that anxiety and depression may actually be a part of fibromyalgia, just like the pain. Many patients with depression and fibromyalgia tell of having great difficulty concentrating on their work along with impaired short-term memory at times.

What causes swelling and tingling hands with fibromyalgia?

Neurological complaints -- such as numbness, tingling, and burning -- are often present with fibromyalgia. While what causes these feelings is unclear, numbness or tingling sensations in the hands, arms, or legs are felt by more than half of the people with fibromyalgia. The feelings may be especially bothersome when they occur in the mornings along with morning stiffness on arising.

The medical term for these sensations is paresthesia. The sensations usually happen at irregular times. When they do occur, they may last a few minutes or they may be constant. While the sensations can be bothersome, they are not severely limiting.

Are chronic headaches a symptom of fibromyalgia?

Chronic headaches, such as recurrent migraine or tension-type headaches, are common in about 70% of the people with fibromyalgia. They can pose a major problem in a person's ability to cope with and self-manage FMS.

The headaches may be a result of pain in the neck and upper part of the back. They are often caused by tightness and contraction of the muscles of the neck, which results in a type of headache called tension-type headaches or muscle-contraction headaches. They may also be caused by tenderness from trigger points over the back of the head and neck. It is important to remember that other medical problems can cause headaches that should be properly diagnosed and treated by your doctor.

Is irritable bowel syndrome a symptom of FMS?

Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40% to 70% of patients with fibromyalgia. Acid reflux or gastroesophageal reflux disease (GERD) also occurs with the same high frequency.

Do menstrual cramps affect women with fibromyalgia?

Unusually painful menstrual cramps occur in 30% to 40% or more of women with fibromyalgia. These cramps, along with other symptoms, are usually present for years.

How is Raynaud's phenomenon related to fibromyalgia?

Raynaud's phenomena is present in 25% to 50% of the people with fibromyalgia. With Raynaud's, your fingers or toes may become quite pale, cold, or blue when exposed to cold temperatures, for example when you are holding a cold glass. The pale or blue changes usually last a few minutes and may be accompanied by pain. When the hands or feet are warmed, they return to normal.

What is restless legs syndrome with fibromyalgia?

Restless legs syndrome results in discomfort in the legs, especially the areas of the legs below the knees, and the feet. It is especially bothersome at night. The feeling can be painful, but most commonly it is described as the need to move the legs to try to make them comfortable.

Restless legs syndrome often interrupts sleep as the person tries to find a comfortable position for rest. As with other symptoms, restless legs syndrome can be found alone or along with other medical problems.

Investigators are constantly looking at various explanations for the occurrence of fibromyalgia. Some, for example, are exploring hormonal disturbances and chemical imbalances that affect nerve signaling. Other experts believe fibromyalgia with its deep muscle pain is linked to stress, illness, or trauma. Still others think there is a hereditary cause or say there is no explanation at all. But while there is no clear consensus about what causes fibromyalgia, most researchers believe fibromyalgia results not from a single event but from a combination of many physical and emotional stressors.

What causes fibromyalgia?

Some have speculated that lower levels of serotonin in the blood leads to lowered pain thresholds or an increased sensitivity to pain. Serotonin is a neurotransmitter in the brain. It's associated with a calming, anxiety-reducing reaction. The lowered pain thresholds may be caused by the reduced effectiveness of the body's natural endorphin painkillers and the increased presence of a chemical called "substance P." Substance P amplifies pain signals.

There have been some studies that link fibromyalgia to sudden trauma to the central nervous system. Keep in mind, though, theories about what causes fibromyalgia are merely speculative.

Who gets fibromyalgia?

Fibromyalgia is far more common in women than in men. Some interesting studies show that women have approximately seven times less serotonin in the brain. That may explain why fibromyalgia syndrome, or FMS, is more prevalent in women.

Another theory states that fibromyalgia is caused by biochemical changes in the body and may be related to hormonal changes or menopause. In addition, some (but not all) people with fibromyalgia have low levels of human growth hormone, which may contribute to the muscle pain.

Does stress cause fibromyalgia?

Some researchers theorize that stress or poor physical conditioning are factors in the cause of fibromyalgia. Another theory suggests that muscle "microtrauma" (very slight damage) leads to an ongoing cycle of pain and fatigue. This mechanism, like all the others, is still unproven for fibromyalgia.

Do insomnia or sleep disorders cause fibromyalgia?

Most people with FMS experience insomnia or non-restorative sleep -- sleep that is light and not refreshing. Disordered sleep might lead to the lower levels of serotonin, which results in increased pain sensitivity. Researchers have created a lower pain threshold in women by depriving them of sleep, possibly simulating fibromyalgia.

Is depression linked to fibromyalgia?

Some scientists used to believe that because fibromyalgia was accompanied by low-grade depression, there may be a link between the two illnesses. Today, mental health issues are no longer thought to cause fibromyalgia. However, chronic pain can cause feelings of anxiety and depression, which may worsen fibromyalgia symptoms.

Is fibromyalgia hereditary?

Like other rheumatic diseases, fibromyalgia could be the result of a genetic tendency that's passed from mother to daughter. Some researchers believe that a person's genes may regulate the way his or her body processes painful stimuli. These scientists theorize that people with fibromyalgia may have a gene or genes that cause them to react intensely to stimuli that most people would not perceive as painful. To date, these genes have not been isolated or identified.

It's thought that when a person with this genetic tendency is exposed to certain emotional or physical stressors -- such as a traumatic crisis or a serious illness -- there is a change in the body's response to stress. This change can result in a higher sensitivity of the entire body to pain.

What are risk factors for fibromyalgia?

Risk factors are distinct characteristics researchers have identified that may increase your chance of getting a certain illness. While researchers have identified some common risk factors for fibromyalgia, there are still many people with the disease who have none of these traits. Also, some women have fibromyalgia with certain diseases, such as osteoarthritis, rheumatoid arthritis, systemic lupus erythematosus (SLE), or other autoimmune diseases. But others have fibromyalgia without any underlying disease.

Possible risk factors for fibromyalgia include:

  • gender (usually female)
  • genetic disposition (may be inherited)
  • menopause (loss of estrogen)
  • poor physical conditioning
  • surgery
  • trauma to the central nervous system (after an injury, accident, illness, or emotional stress)


Kristin said...

I'm glad you got some answers as to why you were feeling the way you do. Although, I've worked with many FM patients back in my chiropractic/physical therapy days & I know how not-so great you feel - I'm sorry you got the diagnosis that you did.

Answers & treatment management is a good thing though :)

Joanna said...

I am so happy that you now know. You aren't in the dark anymore. Now you hopefully get the meds that will work for you and you will be a good track! I am glad that your mood is on the up!

Ashley said...

Man, that's sucks. Is there good meds that can help relieve the pain? And aren't antidepressants the bomb?