Canadian Criteria -- What Additional Symptoms Do You Have?

[slayadragon]

I am working on a project compiling all the symptoms associated with ME/CFS.

Many people I encounter say that they not only qualify for the Canadian Criteria, but also have a bunch of symptoms not on it.

I know a lot of them, but I'd like it to be complete.

So if you have additional symptoms that seem associated with your ME/CFS (rather than a direct result of some other defined illness that you have) -- or if you know of additional symptoms associated with ME/CFS -- would you please share them?

The Canadian Criteria are below.

Thanks very much for your help.

Best, Lisa

*

Canadian Criteria for Chronic Fatigue Syndrome

A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7.

Fatigue

The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

Post-Exertional Malaise and/or Post-Exertional Fatigue

There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatiguability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patients cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer.

Sleep Dysfunction

There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

Pain

There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.

Neurological/Cognitive Manifestations

Two or more of the following difficulties should be present: confusion; impairment of concentration and short-term memory consolidation; disorientation; difficulty with information processing, categorizing and word retrieval; perceptual and sensory disturbances (e.g. spatial instability and disorientation and inability to focus vision). Ataxia, muscle weakness and fasciculations are common. There may be overload phenomena: cognitive, sensory (e.g. photophobia and hypersensitivity to noise) and/or emotional overload, which may lead to crash periods and/or anxiety.

At Least One Symptom from Two of the Following Categories

Autonomic Manifestations: orthostatic intolerance (neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension); light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea

Neuroendocrine Manifestations: loss of thermostatic stability (subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities); intolerance of extremes of heat and cold; marked weight change (anorexia or abnormal appetite); loss of adaptability and worsening of symptoms with stress.

Immune Manifestations: tender lymph nodes; recurrent sore throat; recurrent flu-like symptoms; general malaise; new sensitivities to food, medications and/or chemicals.

The illness persists for at least six months. It usually has a distinct onset, although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children.

 

[Woody]

Have you checked Jodi Bassett's Hummingbird site? She has an extensive list there. Here's the link just in case you haven't seen it. http://www.hfme.org/themesymptomlist.htm

 

[jstefl]

I would like to add two more unusual symptoms.

The first is my periodontal disease. It has improved greatly since I took Valcyte. In a casual conversation with Dr. KDM, he said the he has seen this also.

The other was a pulmonary embolism that I suffered three years ago. I have been on blood thinners since then. Dr. KDM also told me that he believes that this is related to my CFS.

 

[Enid]

It looks great to me as a diagnostic tool - concise and allowing for "things" not necessarily happening together. But can I add - loss of consciousness (twice), sudden unexplained weight loss (1 stone), mouth ulcers, loss of muscular ability to breathe (twice) and nothing to with anxiety but lungs failing to function. Oh and linked with mouth ulcers rapid tooth decay could count as oral symptoms too. The listing is headed "Criteria" and I see Hummingbird's longer listing suggested by Woody is the full "story" for me.

 

[fla]

Tinnitus (high pitched hissing). It only showed up many months after my onset so perhaps not a useful symptom for initial diagnosis.

 

[Sing]

Two more recent finds in my case (I'm in my low 60's and have had ME/CFS for many years.)

Small Fiber Neuropathy (non-myelinated nerves in skin and elsewhere are dying back)

Abnormally low GFR (kidney filtering rate) consistent with "moderate" kidney disease

 

[ixchelkali]

Not only do the symptoms wax and wane (both from day-to-day and as the disease progresses), but the amount I can do without causing an exacerbation (the "energy envelope") fluctuates from day to day.

Inability to multi-task

Difficulty learning new things

Momentarily forgetting how to do something that's normally automatic, like how to tie my shoes or brush my teeth

Difficulty doing arithmetic (dyscalculia)

Choosing the wrong word, frequently one that sounds similar or is related in meaning, such as "table" instead of "chair" (Paraphasia)

Vertical lines, like deep fingerprint lines, on fingertips

Vertical ridges on fingernails

Salt craving

Frequent canker sores

Facial redness similar to rosacea

 

[Cloud]

Lisa, I'm surprised that you've met "many people" who say they don't fit the CCC. I've never had the pain, (and the CCC says that's true for a small sub group), but I fit all the rest perfectly. Also, I've had Tinnitus 24/7 for at least 10 years now.

 

[slayadragon]

What I meant was, I've met a lot of people who've met the CCC, plus had additional symptoms not on the CCC (like the ones people brought up on this thread) that they think are associated with their ME/CFS.

Thanks to all for your contributions. These are very helpful.

Best, Lisa

 

[taniaaust1]

slaydragon .. my symptom list is at http://forums.phoenixrising.me/entry.php?501-My-67-symptoms-of-CFS-ME .. The list got updated but does need to be updated again sometime. Ive actually got 91 or 92 different symptoms and things now going wrong in my body. A few not on that list which I can think of right now are
1/ Testosterone deficiency (seems to be a very common issue in us from talks to others at this site)
2/ Ligament tearing for no reason (my shoulder tendon ripped and wouldnt heal... Ive spoken to many others with CFS who have had similar thing happen... so this may be possibly more common in CFS/ME .. ligaments tearing and not healing).

3/ Hardly no Molybdenum in my body at all (this is an essential trace mineral and deficiencies of this are rare esp in tube fed patients... Ive only heard of one other at this site being tested for it and she had a deficiency of it too.. So i dont know if its more common in CFS/ME or not so dont add this to your list unless its studied further). The doctor said it must be due to my diet.. the thing is it cant be due to my diet as I do eat molybdenum containing foods so there is no reason why I'd have a bad deficiency of it. (now im having to take supplement of it)
*Note.. issues with molydenum will cause MCS as its needed for the body to be able to deal with chemicals and things like saccharin, alcohol etc. So it may turn out that this rare condition is highly connected.

4/ Hyperinsuleinemia (high insulin) . That may not be a CFS thing but rather due to me having Polycystic ovulation syndrome.. in which 95% end up diabetic or with insulin resistance

5/ Thou not a CFS/ME symptom.. Asperger's I think is made worst by CFS/ME. If I hadnt got CFS/ME i probably would of never been diagnosed with it thou I did show signs of it throu childhood. Trying to deal with the CFS/ME and the stress that brings.. brings out the Asperger's more.