tkgoodspirit

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Although its name trivializes the illness as little more than mere tiredness, chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), brings with it a constellation of debilitating symptoms. Here is the differnce between CFIDS and CFS. The Center for Control considers CFS as an immune disorder, while this is still a topic of debate amoung many docs.

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.

The symptoms of CFIDS are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.

Other Common Symptoms
Additional symptoms are frequently 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.

Here is a study that has been documented that shows significant results of blood tests drawn on CFS patients which looked at the amounts of protien in the blood of those with CFS. Again, this study mentions doc's names, but it is not copywrite protected and is in "printable form" to be shared.

Protein May Lead to First Test for Chronic Fatigue Syndrome
Feb. 16, 2000 (New York) -- It's been labeled everything from a stress disorder to the "yuppie flu," but a study in the February issue of The American Journal of Medicine suggests that chronic fatigue syndrome (CFS), for which there is no real diagnostic test, causes changes to the immune system that can be seen in the blood of sufferers. The findings could help lead to a test to diagnose CFS and to distinguish patients with CFS from those with other disorders characterized by chronic fatigue, such as fibromyalgia and depression.

CFS surfaced in the mid-1980s when physicians in resorts and towns near Lake Tahoe began seeing a small cluster of people, primarily women, with similar, debilitating flu-like symptoms that included low-grade fever, body aches, short-term memory loss, sleep disturbances, and fatigue that persisted for months.

According to the CDC, chronic fatigue symptoms now affect more than 14 million people between the ages of 17 and 69. CFS is twice as common in women as in men. Diagnosis is often difficult because most laboratory tests show normal or near-normal results and serve only to rule out conditions with similar symptoms, such as thyroid disease. For years, researchers have looked for markers that would point to defects in the immune system that might cause CFS. Such signs could not only further understanding of how CFS affects the body, but also help legitimize the existence of a disease that some in the medical community question.

In the new study, Kenny De Meirleir, MD, PhD, and colleagues from the Vrije University of Brussels, Belgium, looked for the presence of a protein known as 2-5A binding protein in the blood of 57 people who had had CFS for an average of seven years. They compared blood samples from these patients with blood from healthy subjects and patients with fibromyalgia or depression.

The protein was found in 88% of CFS patients, 38% of fibromyalgia patients, 32% of healthy people, and 14% of depressed patients.

According to the researchers, the protein is directly involved in the immune system's ability to fight viruses that can invade the body. Up to 90% of patients with CFS report that their symptoms started after a viral infection. This has led some researchers to suggest that certain viruses may actually cause CFS. But others say a dysfunction of the immune system that causes it to fail to respond, or to over-respond, to invading viruses may lead to CFS symptoms.

De Meirleir and colleagues cannot say, based on the small size of their study, how many people with CFS have the defective immune-system component that leads to the presence of the protein in their blood. Further research also is needed to determine whether the immune dysfunction "is associated with a particular stage of the illness or if it fluctuates over time," they write.

Vital Information:
Chronic fatigue symptoms affect more than 14 million people, characterized by flu-like symptoms including low-grade fever, body aches, short-term memory loss, sleep disturbances, and fatigue that persists for months.
Chronic fatigue syndrome has no diagnostic test, but this could change, as researchers have discovered a protein in the blood that is associated with the condition.
Researchers hope a test can be developed so that CFS can be accurately diagnosed and not confused with other conditions such as fibromyalgia and depression.

"Wings", I would suggest that before your DH sees the doc, that he keep a "diary" of symptoms. Like how long he sleeps on his days off, swollen glands, sore throats, etc. Remember, swollen glands are not just in the neck. They are in the arm pit, the groin area, anywhere there are lymph nodes. The neck, armpit and groin area, are most commonly affected tho.

Okay, hopefully I won't have to "split" the post. I'm not known for my "brief" posts! Unfortunately.

I hope this helps you and your family, my dear. I honestly hope that all this is simply temporary and is being caused by all the stress of your upcoming surgery. You know, typically, men hold it all in, which could certainly lead to exhaustion. Have him learn as much as he can about CFS and what can cause it. I mentioned EBV, some docs will debate that. But it is believed that CFS is classified as a disease of the immune system caused by something viral or bacterial. Again, debated by some docs, as mentioned earlier in the post. Hopefully, this classification will include FM as you noticed, the two are similar. All this debating! Makes ya nuts!

I posted a reply to your thread about Blue about your upcoming surgery, so I hope it isn't deleted. If it is, I think you already know how I feel about you. I would only ask one favor of your family, that possibly your daughter post here on the board that your surgery was sucessful and that you are doing fine. I think once we hear from someone after your surgery, we will all be able to breathe a sigh of relief, and be able to "hang on" until we hear from you

As far as medication goes, for me personally, I asked my GP about a medication called "Provigil". It's a stimulant and it had indeed given me relief from the extreme exhaustion I was feeling. I take 200mg once in the morning and it helps keep me from taking so many naps. I am still tired, sometimes tired enough to still take a nap. However, now, sometimes I won't sleep, but I'll merely "rest". I have been in a lot of pain lately though and sleeping during the day for an hour or so seems to be the only relief I get from the pain. I think that doing this PT is making me more tired and I'm actually experiencing MORE pain. I go three times a week, and after my session on Friday, the whole weekend is spent with me "recovering". My therapist doesn't seem to get this for some odd reason. My pain level actually raises after I get home from therapy, the bursitis in my shoulder is off the charts as far as pain goes, and I have a trigger point in my neck that is so sore and tight, my whole jaw aches. I felt light headed and my legs were numb today during one of my exercises, I had to stop. Thank goodness, I have only the rest of this week and one more week to go!

Have your hubby ask about Provigil or any other kind of stimulant that may help him with his exhaustion.

Hugs,
tk

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