CFS

[Maija]

I'm an 19-year old girl. I've had Chronic Fatigue Syndrome since 8/2000. CFS often causes heart symptoms or even heart damage, I started to get them soon after I got ill. First I got tachycardia and palpitations only when cold or very anxious etc, but later they started to appear all the time. I've also got chest pains which I believe are not in my lungs or muscles and tingling and swelling.

My circulation is poor and I have slight NMH. Before I got CFS I had a good circulation despite  my quite low blood pressure, but nowadays I'm always cold. I have a constant fever caused by CFS, from 37.3C (99.1F) to  37.8C (100F). Before CFS my body temp was 36.5C (97.7F). I've accounted my freezing to the fever, but might it also be because of the heart?

In 8/2002, I had my EKG taken. The computer said "T wave changes in inferior leads. Appearances are abnormal and may be due to  myocardial ischemia. Summary: abnormal".

Vent. Rate 77 bpm
P Duration 38 ms
QRS Dur 82 ms
PR Int. 128 ms
QT Int. 456 ms
QTc Int. 484 ms
P-R-T AXIS 10' 114' -15'

Apparently these are normal (not sure about PRT) except for QT/QTc. My potassium levels were 3.6, so can't be hypokalemia.  CFS sometimes causes (left) ventricular hypertrophy. To my  understanding, in my EKG the T waves are positive in V2, V3, V4, V5, V6, I, aVL, but negative in II, III and aVF. I'm not sure about the other leads. I had my free T3 and free T4  measured and they were "in the middle of the scale". My ESR was 9, Sodium 140 MMOL/L, CRP <5. Should I have more tests done? Is it safe for me to exercise 2-5h a week?

[Scientist]

Although I am not a physician (I am unqualified to precribe treatment), I do have experience both as a scientist (my expertise is complex systems and inductive inference) and as a sufferer of CFS and arrhythmia.  I suspect that I may have some useful information for all involved in this posting.

While it's true that the etiology of CFS in unproven and many physicians don't know much about likely causes, research has apparently shown that factors involve chronic infection (viral culprits include EBV, CMV, HHV6, and coxsackie), immune system dysfunction, and genetic differences in proteins.  Some people think that the immune problems are caused largely by the infection, but theories abound.

Whatever one calls the disorder(s) (in Great Britian one name seems to be myalgic encephalomyelitis or ME), some medical practitioners group the somewhat various diseases (superficial names?) by believed causation, and claim successful treatment.  My experience centers around antivirals (not pharmaceuticals, rather certain foods, herbs, IV H2O2, and ionized silver).  I have some evidence that this path is working, but sometimes the symptoms worsen for a period, and progress(?) is very slow (I've been at it over a year; I think that both the CFS and the arrhythmia have improved, but I'm still unsure).  I'll elaborate if anyone wants to ask specific questions.

[Maija]

Thanks for the reply, but obviously you're not very educated about CFS. :-/ Fever, cold sensitivity and tachycardia are all VERY common symptoms of CFS (actually among the most common ones), I'd estimate every single one of those symptoms occurs in 30-60% of CFS patients, whereas many of those symptoms mentioned everywhere like sore throat are uncommon. There are also way too many young people with both LVH and CFS for it to be a coincidence, IMO. I haven't heard of a connection between QT and CFS either.

You made me even more convinced I should be seeing a doctor, unfortunately there are no doctors here that know anything about CFS. I hope your comment will be able to convince your parents to pay me to see someone who knows about heart problems at least, If I get that lucky I'll be sure to ask him to calculate the QT time to see if the computer made an error.

[Cleveland Clinic]

Whoa...no need for anyone to apologize. My shoulders are broad.

Maija, I certainly feel your frustrations. Actually I'm quite familiar with chronic fatigue syndrome. As you might realize, none of the symptoms you mentioned are part of the actual diagnostic criteria for CFS. Again, the actual association with CFS as with other syndromes are loose given how common those symptoms are.

My main concern is too often CFS and other syndromes are explained by other systemic and potentially treatable diseases. That is why I would recommend a second opinion in your case.

Your QTC is on the longer side, but as I mentioned the EKG machine often is not accurate and a health care provider should evaluate and calculate whether it truly is long. If so you should be futher evaluated.

CDC Case Definition of Chronic Fatigue Syndrome (CFS)

1. Clinically evaluated, unexplained, persistent, or relapsing fatigue for at least 6 months that:
-Is of new or definite onset,
-Is not the result of ongoing exertion,
-Is not substantially alleviated by rest, and
-Results in substantial reduction in previous levels of activities.

2. Four or more of the following concurrent symptoms on a persistent or recurrent basis during 6 or more consecutive months of illness, none of which may predate the fatigue:
Self-reported impairment in short-term memory or concentration that is severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
Sore throat
Tender cervical or axillary lymph nodes
Muscle pain
Multijoint pain without joint swelling or redness
Headaches of a new type, pattern, or severity
Unrefreshing sleep
Postexertional malaise lasting more than 24 hours

*Both 1 and 2 are required conditions for a diagnosis of CFS.

[Cleveland Clinic]

Maija, Im sorry to hear you're not well.

Chronic fatigue syndrome is not a well understood entity and somewhat of a controversial diagnosis to make. It is also an overdiagnosed entity. I would make sure you are beinng evaluated by a specialist at a tertiary referral center. You specifically attribute alot of specific symptoms such as tachycardia, fevers and cold sensitivity to this syndrome where the association in the published literature is loose at best. Remember there is ALOT of misinformation on the internet, be careful what you read.

That said, the QTc is often calculated wrong on an ECG by the computer so I wouldn't put much stock in that and would have your physician look at the ecg with you. CFS has no association whatsoever with LVH or the QT interval.

I think before you have more test done you should seek an opinion at a referral center and have them evaluate the testing you already have done.

Overall, if all of the test you have done have been essentially negative, it would probably be ok for you to exercise.