Insomniac by Maya Angelou

I always say sleep is for the weak, but I think Maya Angelou says it so much better.

Insomniac by Maya Angelou


There are some nights when
sleep plays coy,
aloof and disdainful.
And all the wiles
that I employ to win
its service to my side
are useless as wounded pride,
and much more painful.

Ok so I'm Bipolar, Now What?

I don't really know what this means, I feel like I'm stumbling around in the dark. Ok, I kind of already figured I was bipolar, but hearing the doctor say it is another thing. That probably sounds silly. The thing is the doctor said we will deal with this after we get the neuropathy under better control and see where that leaves me basically. So I decided to do a little research on the internet on my own. 

Here is some of what I found: 

Doctors usually diagnose mental disorders using guidelines from the Diagnostic and Statistical Manual of Mental Disorders, or DSM. According to the DSM, there are four basic types of bipolar disorder:

1.      Bipolar I Disorder is mainly defined by manic or mixed episodes that last at least seven days, or by manic symptoms that are so severe that the person needs immediate hospital care. Usually, the person also has depressive episodes, typically lasting at least two weeks. The symptoms of mania or depression must be a major change from the person's normal behavior.

2.     Bipolar II Disorder is defined by a pattern of depressive episodes shifting back and forth with hypomanic episodes, but no full-blown manic or mixed episodes.

3.     Bipolar Disorder Not Otherwise Specified (BP-NOS) is diagnosed when a person has symptoms of the illness that do not meet diagnostic criteria for either bipolar I or II. The symptoms may not last long enough, or the person may have too few symptoms, to be diagnosed with bipolar I or II. However, the symptoms are clearly out of the person's normal range of behavior.

4.     Cyclothymic Disorder, or Cyclothymia, is a mild form of bipolar disorder. People who have cyclothymia have episodes of hypomania that shift back and forth with mild depression for at least two years. However, the symptoms do not meet the diagnostic requirements for any other type of bipolar disorder.

I think this would mean that I am Bipolar II. I have never had a full blown manic episode, more what is described as hypomania. I get extra creative during these periods and can not stop doing things no matter how much pain I am in. But, if I take two xanax, and crawl in bed, a lot of twitching ensues, and then I fall asleep and am ok the next day. 

Here is more information from WebMD on Bipolar II: II disorder (pronounced "bipolar two") is a form of mental illness. Bipolar II is similar to bipolar I disorder, with moods cycling between high and low over time.

However, in bipolar II disorder, the "up" moods never reach full-on mania. The less-intense elevated moods in bipolar II disorder are called hypomanic episodes, or hypomania.

A person affected by bipolar II disorder has had at least one hypomanic episode in life. Most people with bipolar II disorder also suffer from episodes of depression. (This is where the term "manic depression" comes from.)

In between episodes of hypomania and depression, many people with bipolar II disorder live normal lives.

Who Is At Risk for Bipolar II Disorder?

Virtually anyone can develop bipolar II disorder. About 2.5% of the U.S. population suffers from some form of bipolar disorder -- almost 6 million people.

Most people are in their teens or early 20s when symptoms first start. Nearly everyone with bipolar II disorder develops it before age 50. People with an immediate family member with bipolar are at higher risk.

What Are the Symptoms of Bipolar II Disorder?

During a hypomanic episode, elevated mood can manifest itself as either euphoria (feeling "high") or as irritability.

Symptoms during hypomanic episodes include:

·        Flying suddenly from one idea to the next

·        Rapid, "pressured" speech

·        Increased energy, with hyperactivity and decreased need for sleep

People experiencing hypomanic episodes are often quite pleasant to be around. They can often seem like the "life of the party" -- making jokes, taking an intense interest in other people and activities, and infecting others with their positive mood.

What's so bad about that, you might ask? Hypomania can also lead to erratic and unhealthy behavior. People in hypomanic episodes might spend money they don't have (my husband would say I know that one well), seek out sex with people they normally wouldn't, and engage in other impulsive or risky behaviors.

Also, the vast majority of people with bipolar II disorder experience significant depressive episodes. These can occur soon after hypomania subsides, or much later. Some people cycle back and forth between hypomania and depression, while others have long periods of normal mood in between episodes.

Untreated, an episode of hypomania can last anywhere from a few days to several years. Most commonly, symptoms continue for a few weeks to a few months.

Depressive episodes in bipolar II disorder are similar to "regular" clinical depression, with depressed mood, loss of pleasure, low energy and activity, feelings of guilt or worthlessness, and thoughts of suicide. Depressive symptoms of bipolar disorder can last weeks, months, or rarely years.

What Are the Treatments for Bipolar II Disorder?

Hypomania often masquerades as happiness and relentless optimism. When hypomania is not causing unhealthy behavior, it generally goes untreated. This is in contrast to true mania, which nearly always requires treatment with medications.

People with bipolar II disorder can benefit from preventive medications that level out moods over the long term. These prevent the negative consequences of hypomania, and also help to prevent episodes of depression.

Mood stabilizers

Lithium: This simple metal in pill form is highly effective at controlling mood swings in bipolar disorder. Lithium has been used for more than a century to treat bipolar disorder. Lithium can take weeks to work fully, making it better for long-term treatment than for sudden hypomanic episodes. Blood levels of lithium must be monitored to avoid side effects.

Depakote (divalproex): This antiseizure medication also works to level out moods. It has a more rapid onset of action than lithium, and it can also be used for prevention.

Some other antiseizure medicines, such as Tegretol (carbamazepine), are also effective mood stabilizers.

Treatment for Depression in Bipolar II Disorder

When taken for depression by someone with bipolar II disorder, common antidepressants like Prozac, Zoloft, and Paxil can set off a full-on manic episode. For this reason, the first treatment for depression should be lithium, Depakote, or an antipsychotic. If these fail after a few weeks, an antidepressant can be safely started. Psychotherapy, such as cognitive-behavioral therapy, can also help.

Can Bipolar II Disorder Be Prevented?

The causes of bipolar disorder are not well understood. It's not known if bipolar II disorder can be prevented entirely. It is possible to prevent some episodes of hypomania or depression, once bipolar disorder has developed. Regular therapy sessions with a psychologist or social worker can stabilize mood, leading to fewer hospitalizations and feeling better overall. Taking medicine on a regular basis also leads to fewer hypomanic or depressive episodes.

How Is Bipolar II Disorder Different From Other Types of Bipolar Disorder?

People with bipolar I disorder experience true mania -- a severe, abnormally elevated mood with erratic behavior. Manic symptoms lead to serious disruptions in life, causing legal or major personal problems. In bipolar II disorder, the symptoms of elevate mood never reach full-on mania. Bipolar II can be thought of as a milder form of bipolar disorder.

Electromyogram (EMG) and Nerve Conduction Studies

I have an appointment next Monday with Dr. Cuervo at the Neurodiagnostic Laboratory here in Lakeland. These are the tests that the scheduler mentioned the doctor may be wanting me to take:

An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. Nerves control the muscles in the body by electrical signals (impulses), and these impulses make the muscles react in specific ways. Nerve and muscle disorders cause the muscles to react in abnormal ways.

Measuring the electrical activity in muscles and nerves can help find diseases that damage muscle tissue (such as muscular dystrophy) or nerves (such as amyotrophic lateral sclerosis or peripheral neuropathies). EMG and nerve conduction studies are often done together to give more complete information.

Why It Is Done

An electromyogram (EMG) is done to find diseases that damage muscle tissue, nerves, or the junctions between nerve and muscle (neuromuscular junctions). These disorders may include a herniated disc, amyotrophic lateral sclerosis (ALS), or myasthenia gravis (MG). Find the cause of weakness, paralysis, or muscle twitching. Problems in a muscle, the nerves supplying a muscle, the spinal cord, or the area of the brain that controls a muscle can cause these symptoms. The EMG does not show brain or spinal cord diseases.

Nerve conduction studies are done to find damage to the peripheral nervous system, which includes all the nerves that lead away from the brain and spinal cord and the smaller nerves that branch out from those nerves. Nerve conduction studies are often used to help find nerve disorders, such as carpal tunnel syndrome or Guillain-Barré syndrome.

Both EMG and nerve conduction studies can help diagnose neuropathy.

How To Prepare

Tell your doctor if you:

• Are taking any medicines. Certain medicines that act on the nervous system (such as muscle relaxants and anticholinergics) can change electromyogram (EMG) results. You may need to stop taking these medicines 3 to 6 days before the test.
• Have had bleeding problems or take blood thinners, such as warfarin (Coumadin) or heparin. If you take blood thinners, your doctor will tell you when to stop taking them before the test.
• Have a pacemaker.

Important instructions to be aware of:

• Do not smoke for 3 hours before the test.
• Do not eat or drink foods that contain caffeine (such as coffee, tea, cola, and chocolate) for 2 to 3 hours before the test.
• Wear loose-fitting clothing so your muscles and nerves can be tested. You may be given a hospital gown to wear

Fibromyalgia: Time for the rheumatologists to hand over?

I have one question about this article that I would like comments on... the article calls for community-based teams of health providers consisting of occupational therapists, physiotherapists, psychologists, nurses and social workers asking them to work alongside GP’s. But then it goes on to mention that fibromyalgia is a chronic central nervous system problem. Doesn't that mean a neurologist should be included in the team?

The American College of Rheumatologists developed diagnostic criteria for fibromyalgia in 1990, the culmination of many years of debate and disparagement of the existence of this pain problem. At the time, it was thought that it was a rheumatic complaint due to the presence of body pain and soft tissue tenderness, so the diagnosis and management of it was firmly in the rheumatologists camp. Research over the last few years shows that it is in fact a pain syndrome centered in the nervous system. Two rheumatologists now suggest that fibromyalgia should no longer be managed by rheumatologists and it should be handed over to…primary care physicians.



The information above is drawn from an editorial by Shir and Fitzcharles, in The Journal of Rheumatology 2009; 36:4. What does this startling suggestion mean really?

There are several points that this editorial makes:

1.Fibromyalgia is no longer a diagnosis of exclusion, and diagnostic accuracy by GP’s has improved significantly (at least in the US)


2.Exclusion of serious rheumatological or other disorders seems to be carried out quite effectively by GP’s


3.Few investigations are needed to increase diagnostic accuracy


4.‘Successful management necessitates approaching the patient as a whole biopsychosocial being, with treatment strategies directed towards physical and psychological complaints within the context of family and society.’


I’m not going to argue with these points at all, but I am going to suggest that leaving the management of fibromyalgia simply to the family physician might not be the best thing for the person with FM. I don’t doubt the clinical skill of GP’s, and I think they are the best group to diagnose FM – but managing FM isn’t a single-clinician job.


While GP’s certainly know how to diagnose, and can prescribe the majority of medications used to manage fibromyalgia, my worry is that the rest of the management is not a medical task. In fact it’s a biopsychosocial problem, as the 4th point above makes. IMHO GP’s don’t have time or access to services in the community to help people with fibromyalgia to live well, it takes a team to do this.


If I had a wand, or the ear of a health funder, I’d be suggesting the formation of community-based teams of health providers consisting of occupational therapists, physiotherapists, psychologists, nurses and social workers. I’d be asking them to work alongside GP’s, (perhaps even in the same buildings!) so that people being seen by the GP could then be included in a team approach to help them develop active coping strategies to live well, despite their health problems.


Now, as it happens, I don’t have the wand or ear, but I can hope. As Shir and Fitzcharles state:
…the pathogenesis of FM is now firmly centered in the nervous system, and FM is not a musculoskeletal complaint. Optimal patient management requires attention to the many symptom components of FM in addition to pain management. Patients with FMwill also require prolonged care with continued tailoring of treatments, as symptoms are likely to change over time.


Maybe one day soon my dream of community-based interdisciplinary teams to help people be well despite pain (or other chronic health problems) will be realised. The sooner a biopsychosocial approach to managing these problems is adopted the better.

If you’re a person with fibromyalgia, some caveats about anything on the internet:


FM has been a wonderful thing for people who sell so-called ‘cures’. It’s such a diffuse problem, has been questioned for years by the medical community, is often not clearly diagnosed, and changes its presentation often – so people who are either unscrupulous, or are credulous can go about selling all sorts of potions, pills and gadgets for the ‘cure’ of the disorder.

FM doesn’t respond to very much, it’s a chronic central nervous system problem, and living with it means learning how to LIVE with it, not fight it, defeat it, or beat it. It won’t just disappear of its own accord, and it won’t disappear because of some herbal, crystal, magnetic Thing.

Be sceptical, ask for evidence and don’t accept anecdote or endorsements as evidence for the power of any treatment. Self management is really the only way to live well with FM, although some medications can help. Here’s a good site for learning about self management for FM, and here’s a brief overview of a study about how self management can improve the outcomes of exercise in FM.


SHIR, Y., & FITZCHARLES, M. (2009). Should Rheumatologists Retain Ownership of Fibromyalgia? The Journal of Rheumatology, 36 (4), 667-670 DOI: 10.3899/jrheum.08107

Pink Lemonade

This recipe is from my friend Stacey's blog. Stacey actually has several blogs each covering a fantastic, informative array of topics. This recipe comes from her blog at http://everybitcookinggardening.blogspot.com. She also has a fantastic blog about her struggles with fibromyalgia, and lupus while raising a family. This can be found at http://fibroandi.blogspot.com.

Ingredients

1 cup lemon juice, freshly squeezed or bottled

1 cup strawberries, sliced

1/2 cup splenda
5 cups water

1 lemon (optional, for slices)

Directions:

In a blender, puree lemon juice and strawberries. Strain through fine mesh strainer pressing berries with spatula. Combine juice, splenda, and water and stir until splenda is dissolved. Pour into a jar and cover. Refrigerate. Add lemon slices before serving. (ok call me lazy but I just put everything in the blender and didn't strain a thing, there was a foam on the top, but the lemonade was fantastic!).

The Long Search for Fibromyalgia Support

By ANNE UNDERWOOD
Fabrizio Costantini for The New York Times

Judy Robinson has been living with fibromyalgia.

Glenn Robinson was always physically affectionate with his wife, Judy. But after she underwent abdominal surgery four years ago, everything changed.

Long after the incision healed, Judy had pain in her hips, her lower back, her legs, her muscles, her skin. When Glenn tried to tickle or squeeze her, she would shy away. Hugs would elicit a grimace. “Don’t touch me; it hurts,” she would say, backing off. Glenn reacted the way any husband would. “I got angry,” he said.

The couple’s social life ground to a halt. Judy, 48, began begging off picnics, barbecues and trips to the boat races at Belle Isle Park in Detroit, where they live.

“We would make plans to get together with friends for dinner,” said Glenn, 50. “Come that day, beautiful weather, she wouldn’t want to leave the house.”

There were days when Judy didn’t even want to talk on the phone. And though she soldiered through eight-hour workdays in the shipping and receiving department of a leather company, she would take breaks to sit in the bathroom and cry.

The Robinsons became desperate to find out what could possibly be causing Judy’s pain. M.R.I.’s turned up nothing more than a herniated disc or osteoarthritis. Both can be excruciating, but neither could account for the pains Judy felt all over her body. Her doctor prescribed narcotics, but even those didn’t help. It hurt to wash her face. It hurt to raise her arm. It hurt to sleep. It still does.

“If you touch my back, it feels like it’s all bruised,” she said. “Lately it’s felt like electroshocks.”

In March 2009, after four years of suffering, Judy finally found a new doctor who could name her ailment: fibromyalgia.

If there is a circle of purgatory that Dante forgot, it might be the one reserved for fibromyalgia sufferers. The problem isn’t just pervasive pain. It’s the challenge of having a condition that is not well understood. It doesn’t help that there is no objective medical test to confirm it — no blood test, no cheek swab, no X-ray — just a patient’s subjective reports. Nor does it help that there is no cure. Many physicians don’t want to be bothered with incurable patients.

If doctors don’t sympathize, why would friends? How do you explain to people that you have no broken bones or burns or even infections, yet your body hurts all over? You look fine, yet beg off work and social engagements. Are you a malingerer? Are you just trying to claim disability? Are you simply crazy? And why don’t you get better?

“Divorce is a big problem,” said Sharon Waldrop, head of the Fibromyalgia Association of Michigan.

And yet, this is a huge improvement over the situation a few decades ago. Until 1990, when the American College of Rheumatology published diagnostic criteria, fibromyalgia was routinely dismissed as the imaginary sufferings of hysterical, middle-age women.

Muhammad Yunus, a rheumatologist at the University of Illinois College of Medicine at Peoria, has been a pivotal figure in the field. He published the first scientific study describing clinical characteristics of the disease in 1981 and the first genetic linkage study in 1999. But when he expressed his initial interest in fibromyalgia in the late 1970s, his mentor discouraged him. “ ‘You will ruin your academic career by dealing with these crazy people,’ ” he said his mentor told him. “ ‘They’re women. They’re complainers. They’re lazy.’ ”

Today, research is validating their suffering, showing that people with fibromyalgia really do process pain differently. The syndrome is recognized by the World Health Organization, the Centers for Disease Control and Prevention, the American College of Rheumatology, the Arthritis Foundation, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The Food and Drug Administration has approved three drugs to treat it — Lyrica, Cymbalta and Savella are the brand names — and fibromyalgia has its own diagnostic code for insurance forms.

“Insurance companies don’t have a code number for a disease unless it’s real,” said Dr. Mark Pellegrino, founder of the Ohio Rehab Center in Canton and the author of 15 books on fibromyalgia.

Doctors today have a much better idea of how to treat the ailment — not only with drugs, but also with exercise and measures to improve sleep. And though the suffering never totally goes away, it is possible to vastly reduce the pain and learn to cope with what remains.

Minnie Lee, 37, a financial planner in Playa Del Rey, Calif., is one who has managed successfully. Once bedridden with stabbing pains in her back, she now exercises regularly and has completed half a dozen triathlons. She even writes a fibromyalgia blog that offers encouragement to other sufferers.

Yet there are still rampant misconceptions, even among physicians.

“A year ago, a doctor told me only women had fibromyalgia,” said Randy Wold, 58, a drag racer and retired auto mechanic from Cypress, Calif., who has suffered from fibromyalgia since the early 1990s. Today he races his 1979 Z 28 Camaro and 1989 Pontiac Firebird with the logo for the National Fibromyalgia Association emblazoned on them and makes an announcement that if there is a man there with pain, he’s willing to talk. Without such support, he says, it can be hard for a man to get a diagnosis.

And no matter what gender the patient is, struggles with insurance companies are common. Lynne Matallana, president and founder of the National Fibromyalgia Association, says many members have complained that insurers make it difficult to receive the approved drugs for fibromyalgia.

“Since these drugs are new, there is no generic version,” she said. “But insurance companies often require that doctors prescribe generics first.”

As a result, patients have to demonstrate that they have failed to respond to cheaper drugs, prescribed off-label for fibromyalgia, before they get the ones that work best.

To Judy Robinson, such complaints are minor, compared with the stress and frustration of living with an undiagnosed disease.

Now that she has finally put a name to her ailment, she has found the right drug to treat it. Equally important, knowing the name of her condition has led her to her local fibromyalgia association, where she and Glenn have gotten emotional support and extensive information.

“Before this,” Glenn said, “I never really understood before what Judy was going through.”

I have to say I know exactly what this woman has been through, and I'm sure you do too. I love the reference to Dante's circles of purgatory, it's so true. I couldn't have said it better about not wanting to be touched. My husband can certainly empathize with her husband. Maybe there should be a support group for husbands, wives, and families of this disease. I am sure my husband could use someone to talk to who would understand,, like the support group I have. I too cringe at being touched. I used to love to snuggle. When we first met we would lay on the couch snuggled together for hours, just watching tv, my husband's arms around me. Now, I can't take the weight of his arm, it causes pressure. Pressue = pain. No, before you ask, sex is not an option. I've told my husband he can leave me, find someone who can give him the affection he craves, the physical needs he has. But, luckily for me this amazing man says our relationship has never been about the physical aspect.
I've also cried in the bathroom at work from the pain, slept in the stall from sleep apnea (before I was diagnosed), even fell asleep in the middle of a phone call with a customer, and broke my car in half in a total Dukes of Hazzard jump over 2 fences and a ditch. Landed in a cow pasture, luckily for me the cows were in the other pasture that day. Might have been cool to see, if I weren't sleeping. I wasn't hurt thank goodness, and neither were any cows. Unfortunately the gorgeous red firebird my brother gave me was broken in half, unrepairable. Sorry about that bro.

Excellent news

I did call Lilly Pharmaceuticals today and my application for prescription assistance was approved. This means cymbalta for free, what a relief. We have a limited insurance plan through my husband's work so it is not covered. And, with only him working we couldn't really afford it, but it helps with the pain. I missed a few days this week, because I was running out. I could barely crawl out of bed, I was so stiff and sore. This will cover me for a year. Every drug company is different. I know for a famiy of 2 I believe Lilly was a maximum of 44,000 a year. Which is pretty high. The website link is  http://www.lillycares.com/index.jsp. The medication is shipped to your doctor. If your doctor is better than mine they may actually call and tell you it's there. Good thing I have an appointment tomorrow!