Self-Portrait - photograph by Kristy Throndson copyright 2012

My Symptomology

Since ME/CFS & Fibromyalgia patients seem to have such a wide variety and severity of symptoms, I thought I would list mine here so that readers of my site would understand my personal perspective on the diseases and understand that my experience may be very different from their own or those they know.

Fatigue:  This symptom has been present consistently since the onset of my illness about two years ago.  The severity has ranged from, a lack of stamina and tiring easily, to not being able to climb a flight of stairs or lift my arms higher than chest level.  Some days I can barely lift my body from the bed or couch.  I needed lots of sleep and I become so tired during the day I need to lay down for two to three hours.

Weakness:  These first two symptoms are interrelated and sometimes it's difficult to define what exactly I'm experiencing.  I usually define weakness as a feeling in the muscles.  For example, when I walk, my leg muscles feel shaky and burn when they're even slightly over-exerted.  It's as though you're driving an old car that's running out of fuel, sputtering and shaking.  When I'm experiencing severe bouts of weakness, I can't, for example, fold bed sheets.  The weight of the sheets is too heavy and I can't lift my arms high enough, the muscles simply give out.  This symptom, also, has been present from the beginning, varying in severity.

Shortness of Breath & Heart Arrythmias: These two symptoms have appeared during particularly severe episodes of the disease(s).  They usually appear together.  When I'm walking or otherwise exerting myself, my heart pauses, then beats one strong beat that almost sounds like a deep "clunk".  I find myself sighing frequently and suddenly feeling as though I'm suffocating and need to take a big deep breath.

Profuse Sweating: This also appears in phases.  Sometimes walking across the room or even bending down or reaching high will cause me to start sweating.   I have to change my clothes several times a day because they're soaked through.

Body Pain:  This sounds like a generalization but it's the only phrase that really fits.  The pain I feel is everywhere in my body from my fingers to my toes.  It's hard to describe, but the best comparison I can think of is the deep aching pain you get when you have a high fever.  This symptom is usually lasts for at least a month when it shows up.  I usually spend a lot of time laying on a heating pad and taking hot showers since that's the only thing that helps at all.  I notice that lack of sleep definitely intensifies the pain.

Eye Pain:  Usually the eye pain is present at the same time as the other body pains.  My eyes become very sensitive to light and feel heavy and sore. 

Sore Throat/ Hoarse Voice: This is another symptom that comes and goes.  The sore throat is never severe, really just annoying.  I always feel like I need to clear my throat and my voice gets gravely. 

Feeling Feverish:  When I first got ill, I must have taken my temperature four times a day.  I just couldn't believe that I didn't have a fever.  I was flushed, sweaty, hot then cold with chills and of course, had those feverish aches.  This sensation is present a lot of the time but to varying degrees.  

Cognitive Impairment:This was something that took me a while to realize.  At first it seemed like I was forgetting names and appointments more than normal, but I'm a pretty forgetful person to begin with so I thought maybe it was my imagination.  When I started making major mistakes at work, I knew something was different and very wrong.  I'm the manager of a small hotel and normally very detail oriented and precise.  After a few occasions where guests called the hotel, claimed they had spoken to me and I had no recollection of the conversation, I really started to worry.  One day I made so many mistakes and was so confused, that I called my employers and told them I needed to take a medical leave.  Sometimes when I'm really in a "fog" I have a hard time following a simple conversation.

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What Are the Symptoms of Fibromyalgia?

Symptoms of fibromyalgia include:

  • Chronic muscle pain, muscle spasms or tightness, weakness in the limbs, and leg cramps
  • Moderate or severe fatigue and decreased energy
  • Insomnia or waking up feeling just as tired as when you went to sleep
  • Stiffness upon waking or after staying in one position for too long
  • Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”)
  • Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
  • Tension or migraine headaches
  • Jaw and facial tenderness
  • Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
  • Feeling anxious or depressed
  • Numbness or tingling in the face, arms, hands, legs, or feet
  • Increase in urinary urgency or frequency (irritable bladder)
  • Reduced tolerance for exercise and muscle pain after exercise
  • A feeling of swelling (without actual swelling) in the hands and feet
  • Painful menstrual periods
  • Dizziness

Fibromyalgia symptoms may intensify depending on the time of day -- morning, late afternoon, and evening tend to be the worst times, while 11 a.m. to 3 p.m. tends to be the best time. Symptoms may also get worse with fatigue, tension, inactivity, changes in the weather, cold or drafty conditions, overexertion, hormonal fluctuations (such as just before your period or during menopause), stress, depression, or other emotional factors.

If the condition is not diagnosed and treated early, symptoms can go on indefinitely, or they may disappear for months and then recur.

from WebMD


Chronic Fatigue Syndrome - Symptoms

The main symptom of chronic fatigue syndrome (CFS) is a devastating tiredness or exhaustion that has lasted at least 6 months and does not improve much with rest. This fatigue also is so severe that it interferes with your work, your play, and your social activities. The fatigue and other symptoms described below may begin suddenly or they may develop gradually over weeks or months.

Other long-term symptoms include:

  • Forgetfulness, memory loss, confusion, or difficulty concentrating.
  • Sore throat.
  • A fever.
  • Tender lymph nodes in the neck or armpits.
  • Muscle pain.
  • Joint pain without redness or swelling.
  • Headaches that are different from other headaches you have had in the past.
  • Unrefreshing sleep (waking up feeling tired or not rested).
  • Feeling unwell after exercise or other physical activities.

Because CFS is not easily diagnosed, health experts have established some rules to help them recognize the disease. To be diagnosed with CFS, you must have fatigue and at least four of the symptoms listed above. At least four of your symptoms must have started at the same time as or after your fatigue began, and they must have lasted for at least 6 months.

But if you have symptoms of CFS, such as often feeling very tired for no clear reason, you may still get treatment even if you don’t quite meet these criteria. For instance, your doctor may decide you need treatment even if you have had symptoms for less than 6 months.

Some people with CFS develop a condition in which their heart rate increases and their blood pressure drops when they stand or sit up from a reclining position. This is often described as feeling "lightheaded" or feeling faint or dizzy. This condition is called orthostatic hypotension.

Depression is common and can make your other symptoms worse. Antidepressant medicines can help you feel better.

CFS causes symptoms that are the same as many other diseases, especially early on. For this reason, it can be diagnosed only after a thorough evaluation has ruled out other conditions with similar symptoms.

from WebMD: