all symptoms of chronic fatigue syndrome except one problem...

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New Member

Date Joined Feb 2011
Total Posts : 1
   Posted 2/12/2011 3:00 PM (GMT -6)   
I'm almost sure I have CFS.

I sleep 15 hours a day and I'm still exhausted, my memory has been horrible lately and my concentration (although I do have ADHD) , horrible joint and muscle pain, muscle weakness, migraines. I'm always sick: lots of sore throats and I pick up any virus I'm exposed to. I get pneumonia multiple times a year, always get the flu and everything else. I've also had some bowel symptoms as well. I'm very sensitive to a lot of foods. I always have stomach aches, diarrhea and mouth ulcers. Other symptoms I have are orthostatic instability as well as fainting, dizziness, and anxiety. I'm always freezing and cannot tolerate the cold what so ever. The worst part is I'm stressed from not knowing whats wrong with me which causes my symptoms to worsen. I'm only 18 years old and I feel like I'm 85! Basically I have every symptom out there.

But I had some blood work done and I have a high sed rate. Normal for me would be 1-20. Mine is 56, which indicates inflammation. My CRP level was also double the normal rate. I have been seeing a rheumtologist and they cannot find whats wrong. They will not diagnosis me with CFS b/c of my sed rate and CRP level.

Could I still have CFS even though there is inflammation in my body or could it be something else!?
Please help. I'm so tired of feeling awful :(

Post Edited (Nini92) : 2/13/2011 5:02:14 PM (GMT-7)

New Member

Date Joined Feb 2011
Total Posts : 8
   Posted 2/13/2011 5:05 PM (GMT -6)   
Although you meet the research definition for CFS, a clinical diagnosis is much more complex. Inflammation may or may not rule out CFS, but it doesn't preclude it.

Despite the name, Chronic Fatigue Syndrome - also known as myalgic encephalomyelitis and post viral fatigue syndrome - is so much more than being tired. It is a severe complex neuroimmune disease. Below is the clinical definition used to diagnose ME/CFS.

It should not to be confused with the solitary symptom of chronic fatigue which is just one of many symptoms found in over 30 diseases including ME/CFS.

Once thought to be psychological modern scientists consider the cause to be viral although the resulting cascade in multiple body systems may result in other concerns at the tertiary level. There is currently no cure although there are drugs that alleviate some symptoms and counselling may help you with dealing with the fallout from being severely ill - something that is common in all diseases.

The 2003 Canadian Clinical Case Definition is summarized as follows and symptoms from all of the categories are required for a clinical diagnosis of CFS. The full paper can be found in PubMed.

1. POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. A pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.

3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity. Neuropathic pain is also a common symptom

4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following difficulties should be present: Confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: Informational, cognitive, and sensory overload -- e.g., photophobia and hypersensitivity to noise -- and/or emotional overload which may lead to relapses and/or anxiety.


A. AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: E.g., neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities.

B. NEUROENDOCRINE MANIFESTATIONS: Loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.

C. IMMUNE MANIFESTATIONS: Tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.

6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.

Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. J CFS 2002;11(1):7 – 116

Regular Member

Date Joined Feb 2010
Total Posts : 184
   Posted 3/5/2011 5:24 PM (GMT -6)   
These sound so much like neurological Lyme disease. With Lyme testing so poor, I am not sure how to distinguish between CFS and Lyme.

Have you been bitten by a tick, had a rash, been tested for Lyme and co-infections?

New Member

Date Joined Feb 2011
Total Posts : 8
   Posted 3/5/2011 5:39 PM (GMT -6)   
Clinicians who treat CFS patients consider CFS to be a neurological disorder and indeed it is thus classified by the World Health Organization. But just having symptoms in common is not enough as the following study shows.

Spinal Fluid Proteins Distinguish Lyme Disease from Chronic Fatigue Syndrome
ScienceDaily (Feb. 23, 2011) — Patients who suffer from Neurologic Post Treatment Lyme disease (nPTLS) and those with the chronic fatigue syndrome report similar symptoms. However unique proteins discovered in spinal fluid can distinguish those two groups from one another and also from people in normal health, according to new research conducted by a team led by Steven E. Schutzer, MD, of the University of Medicine and Dentistry of New Jersey -- New Jersey Medical School, and Richard D. Smith, Ph.D., of Pacific Northwest National Laboratory.

This finding, published in the journal PLoS ONE, also suggests that both conditions involve the central nervous system and that protein abnormalities in the central nervous system are causes and/or effects of both conditions.

The investigators analyzed spinal fluid from three groups of people. One group consisted of 43 patients who fulfilled the clinical criteria for chronic fatigue syndrome (CFS). The second group consisted of 25 patients who had been diagnosed with, and treated for, Lyme disease but did not completely recover. The third group consisted of 11 healthy control subjects. "Spinal fluid is like a liquid window to the brain," says Dr. Schutzer. By studying the spinal fluid, the research team hoped to find abnormalities that could be used as markers of each condition and could lead to improvements in diagnosis and treatment.

Taking advantage of previously unavailable methods for detailed analysis of spinal fluid, the investigators analyzed the fluid by means of high powered mass spectrometry and special protein separation techniques. They found that each group had more than 2,500 detectable proteins. The research team discovered that there were 738 proteins that were identified only in CFS but not in either healthy normal controls or patients with nPTLS and 692 proteins found only in the nPTLS patients. Previously there had been no available candidate biomarkers to distinguish between the two syndromes, nor even strong evidence that the central nervous system is involved in those conditions.

This research represents the most comprehensive analysis of the complete CSF proteome (collection of proteins) to date for both Chronic Fatigue Syndrome and Neurologic Post Treatment Lyme disease (nPTLS). Prior to this study, many scientists believed that CFS was an umbrella category that included nPTLS. However these results call those previous suppositions into question.

According to Dr. Schutzer, spinal fluid proteins can likely be used as a marker of disease, and this study provides a starting point for research in that area. "One next step will be to find the best biomarkers that will give conclusive diagnostic results," he says. "In addition, if a protein pathway is found to influence either disease, scientists could then develop treatments to target that particular pathway."

"Newer techniques that are being developed by the team will allow researchers to dig even deeper and get more information for these and other neurologic diseases," says Dr. Smith. "These exciting findings are the tip of our research iceberg"
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