Healthy Living

What People with Fibromyalgia Want You to Know

What People with Fibromyalgia Want You to Know

Key Takeaways

  • Fibromyalgia is a chronic disorder that causes extensive pain, tiredness, and tenderness all over the body.
  • The conditions and requirements for claiming disability due to fibromyalgia are broad.
  • Getting a proper diagnosis for fibromyalgia is a struggle in itself.

Fibromyalgia is a chronic disorder that causes extensive pain, tiredness, and tenderness all over the body. The disorder affects both men and women, though females are far more probable to develop fibromyalgia.

Having fibromyalgia brings constant difficulty to daily life

Fibromyalgia is a chronic disorder, and people with the disease are constantly fighting against pain, fatigue and more. Can you imagine dealing with the following symptoms on a daily, or at least on a very frequent basis?

  • Chronic muscle pain that may either be mild, episodic or totally incapacitating. Also, some may experience muscle spasms or tightness.
  • Feeling moderately or sometimes severely fatigued, and having dwindled energy
  • Difficulty sleeping or trouble returning to sleep (insomnia), or waking up feeling exhausted just like you first went to bed
  • Experiencing stiffness when waking up or after remaining on one side for too long
  • Trouble remembering, focusing, and executing simple mental tasks, which is also known as "fibro fog"
  • Nausea, stomach pain, bloating, and constipation sporadic with diarrhea (irritable bowel syndrome)
  • Tension or migraine episodes
  • Feeling of tenderness in the jaw and facial areas
  • Being sensitive to any of the following: bright lights, cold, odors, noise, medications, certain foods, and cold
  • Feel anxious or depressed
  • Feeling numbness or tingling in your hands, face, arms, legs or feet
  • Increase in urge to urinate or irritable bowel bladder
  • Intolerance to or discomfort from exercises, and muscle pain after the exercise or workout
  • You feel like both hands and feet are swollen when in actual sense it isn’t true

Severe fibromyalgia might require a person to go on disability

What's the criterion for fibromyalgia disability? You first need to fill out a disability application which is evaluated by the SSA. Upon evaluation, the SSA (Social Security Administration) determines if you have MDI (medically determinable impairment) of fibromyalgia.

The conditions and requirements for claiming incapacity due to fibromyalgia are broad. Let's walk through the whole process, as it comprises the following:

  • Signs that must be severe and existing for at the minimum three months
  • Well-documented proof that rules out other disorders
  • Testimonials from you and others about any constraints or helplessness on your day-to-day activities
  • Does fibromyalgia inhibit you from working 

You must also have a minimum of 11 of the 18 tender points above and below your waist and on both sides of your body, or at least 6 constant symptoms of fibromyalgia.

These indications include:

  • Memory or difficulties with your thoughts called “fibro fog”
  • Irritable bowel syndrome (IBS)
  • Anxiety
  • Fatigue
  • Waking up tired
  • Depression

Even though the SSA requires doctor’s diagnosis, you can lose or win your disability application based on symptoms and limitations. The simple truth is the SSA must verify whether you are capable of working even with proof that you have fibromyalgia.

Getting a proper fibromyalgia diagnosis is a struggle in itself

Diagnosis processes range from physical exams to X-rays to lab tests. Sadly, most routine lab tests are never useful on their own for diagnosis of fibromyalgia. And, X-rays of painful areas don't show any abnormality regarding fibromyalgia.

A doctor may have to order numerous tests to rule out other ailments with similar symptoms. Believe it or not, the tests vary from patient to patient.

The diagnosis itself is a long and painful journey. Patients present fibromyalgia signs differently, although pain is the core of it all.

To make matters worse, doctors struggle to extract info they need from their undiagnosed patients. Most patients have a hard time describing their symptoms.

The doctor can assess the extent of your pain when you apply some gentle pressure on specific “tender points” where the aching is more likely to be at its worst.

Criterion most widely used for diagnosing fibromyalgia includes:

  • You have severe pain in 3 to 6 different points of your body, or at least mild pain in 7 or more different points.
  • Your symptoms have persisted at similar levels for a minimum of 3 months.

Post fibromyalgia diagnosis

It may take years to be finally declared by a rheumatologist that you suffer from fibromyalgia. This can be extremely frustrating and disheartening. Patients simply want to know what is wrong. They want to get down to the bottom of it. But, when a diagnosis finally does occur, fibromyalgia patients can be at peace with their situations. People need to work hard to manage fibromyalgia.

Survival tips for fibromyalgia patients

There are a number of things people with fibromyalgia can do in order to deal with their chronic disorder. Here are some tips for you if you have fibromyalgia:

  • Join a support group or start one yourself
  • Stay up-to-date – do a lot of research and obtain helpful info
  • Maintain a healthy diet and exercise too
  • Stretching, swimming, walking and a little yoga can help you deal with the pain
  • Accept help when needed
  • Work with your doctor around managing the condition
  • Don’t overdo your exercises your pain and symptoms will just kick in
  • Understand your limitations – when you feel tired take a rest

Please remember that some tips may work for you while others may not. Consult with your doctor before trying out any exercise or tips.

Relevant fibromyalgia testing

Blood tests are done to rule out other possible conditions such as lupus or arthritis, for example. The tests include blood count, thyroid function, rheumatoid factor and peptide.

A recent discovery of blood testing for fibromyalgia patients called the FM test is touted at 99% accurate by proponents.

The test searches for certain protein molecules called chemokines and cytokines in your blood produced by the white blood cells. Fibromyalgia patients have a smaller number of chemokines and cytokines, for this reason, they have a lower immunity compared to other patients without fibromyalgia.

Basically, lupus and rheumatoid arthritis present the same chronic pain and a weak immune system just like fibromyalgia patients, but they don’t have similar immune system biomarkers – the patterns are different.

Unfortunately, many people with fibromyalgia cannot work due to its chronic and overwhelming symptoms. These symptoms interfere with daily functioning. Some people who aren't working don't have the money or insurance needed for FM blood testing. This causes further strain and frustration – financially and emotionally.

Fibromyalgia is more prevalent in women

Fibromyalgia is much more prevalent among women. According to the NIH (National Institute of Health), 80% to 90% of people who become diagnosed with the ailment are women.

Every so often, men get misdiagnosed for describing fibromyalgia symptoms contrarily. Women frequently report greater fibromyalgia pain compared to men. The reasons behind this may be related to hormones, immune system differences, or genes.

Even so, researchers are uncertain why women are at a greater risk of developing fibromyalgia than men are. The only way to check for it is to rule out other possible illnesses.

Closing thoughts

Reluctance on the side of the patient to talk about the symptoms freely may hinder proper diagnosis. On the flip side – patients are wearied of the process and start exhibiting their anxiety in the doctor’s room. Regrettably, this more often than not backfires and only adds to the mix-up in the diagnosis process.

Sometimes all you need to do is improve communication between you and your doctor by simply preparing a simple, short description of your symptoms. The patient should bring along the list during the doctor’s appointment.

In your list, remember to identify the symptoms and carefully use these specific terms to be clear so as to assist the doctor in diagnosing fibromyalgia.

  • Pain - extensive, everywhere, endless, all over, for a long time
  • Chronic fatigue - extreme, nonstop fatigue that is affecting your ability to do what you want to do
  • Sleep problems - you may talk about the inability to fall asleep and stay asleep
  • Soreness - handshakes, hugs, and other typically non-painful interactions are now causing aching
  • Attentiveness or memory difficulties - also called “fibro fog”
  • Tender points – upper chest, hips, front and back of the neck, elbows, mid- to upper-back of the shoulders, upper buttocks, knees

Don't hesitate to get a second opinion, and don't give up on finding a doctor until you find one who suits you.