One man’s voice

Dealing with the effects of Fibromyalgia and Chronic Fatigue Syndrome

Posted on June 30th, 2008 in On Family, On Marriage, Personal Messages, Rants | No Comments »

A few weeks ago my wife was diagnosed with Fibromyalgia. Fibromyalgia is a very lifestyle disturbing illness that is very difficult to diagnose and ever more difficult to treat. In a nutshell:

The defining symptoms of fibromyalgia are chronic, widespread pain and tenderness to light touch. Other symptoms can include moderate to severe fatigue, a heightened and painful response to gentle touch (allodynia), needle-like tingling of the skin, muscle aches, prolonged muscle spasms, weakness in the limbs, nerve pain, functional bowel disturbances, and chronic sleep disturbances. Sleep disturbances may be related to a phenomenon called alpha-delta sleep, a condition in which deep sleep (associated with delta waves) is frequently interrupted by bursts of alpha waves, which normally occur during wakefulness. Slow-wave sleep is often dramatically reduced.

Many patients experience cognitive dysfunction (known as “brain fog” or “fibrofog”), which may be characterized by impaired concentration, problems with short and long-term memory, short-term memory consolidation, genitourinary symptoms and interstitial cystitis, dermatological disorders, headaches, myoclonic twitches, and symptomatic hypoglycemia. Although fibromyalgia is classified based on the presence of chronic widespread pain, pain may also be localized in areas such as the shoulders, neck, low back, hips, or other areas. Many sufferers also experience varying degrees of facial pain and have high rates of comorbid temporomandibular joint disorder. Not all patients have all symptoms.

Wikipedia

At first I thought the doctor was spot on because my wife has exhibited many of those symptoms in the past eight months that she has been ill. There were a few inconsistencies with the diagnosis in my opinion, but for the most part all of the things that are encompassed by fibromyalgia were apparent in my wife’s lack of health for the last eight months.

Then a few days ago my wife found Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS, or CFS for short) and began to look closer at that. Now I have read about CFS. In fact, when my wife first got sick back in November I read I about CFS and thought that the symptoms seemed eerily similar to what she was experiencing. I even suggested it to my wife’s doctor in January and, as of about a month ago, the only thing related to it that was ever put in my wife’s chart was “fatigue”. Not CFS, just fatigue.

Looking closer as CFS you’ll find:

CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.

…

Additional symptoms are reported by people with CFIDS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.

CFIDS Association of America

The more I look at CFS the more I think that this is where the problem lies. I think my wife has been stricken by this illness more than I am thinking fibromyalgia. Here is my thought process:

If you look closely you can see that many of the symptoms Sandi exhibits are found in CFS. And while the fibromyalgia camp still carries with it a heavy list of things that suck, Sandi is experiencing more of the CFS related issues than the fibromyalgia ones.

This leads me to think the doctors have misdiagnosed her. Which means they are treating something that is not what she has. Which means the chances of her improving her health are pretty much crap. Which means that our family is going to continue to go through hell daily until something can be done.

The most daunting thing about CFS, as I continue to study it, is the insanely long recovery period. It is one in which people with CFS may never actually fully recover. And in general that period is between two and five years. How badly does that suck to be the poor soul with CFS? Living, day in and day out like you have just gotten run over by a train and knowing that you are going to be run over again tomorrow as soon as you wake up, and then again the next day, and again the next, and so on. For years.

I really feel a great deal of sympathy for my wife right now because she is in a place that no one should ever have to be. Her life is very hard right now and as such, the lives of her family members are very hard right now. But praise God, there are people that are willing to help us and many have already helped us.

I am just trying to wade through the stuff that I have take care of now that my wife is, in effect, incapacitated. But that will be for tomorrow’s post I think, one in which I will call out for help from single parents that are trying to raise kids, take care of the house and take care of the bills.

That ought to be fun.