Has anyone come across any articles comparing POTS and CFS? I am really interested in learning more about the similarities and differences between the two.

I believe 1 difference between POTS and CFS is the pain with POTS. Many patients with POTS have some sort of pain, either migraine headaches, or abdominal pain like my son. My son has abdominal pain 24/7, but seems to be better with the meds that he is on. He says it's more manageable.

Dr. Philip Fischer at Mayo Clinic states in his findings "It is also not completely clears how POTS relates to what is sometimes called the chronic fatigue syndrome. Chronic fatigue, like irritable bowel syndrome, often follows an illness or is triggered by an illness. Lots of these patients probably really have autonomic dysfunction or even overt POTS".-AUTONOMIC DYSFUNCTION AND POTS-Dr. Philip Fischer, 10-30-06


If anybody finds any more articles, I'd be interested to read their findings also.

Amazing..... I am pretty new with POTS but learning more and more every day.

Cybermom, I read what you said about abdominal pain that your son has. I am sorry that he has to deal with this.

Prior to learning about ITS & POTS, I have been dealing with unexplained abdominal pain for years. My doctors did everything including several surgeries and could not FIX ME. I finally went to a pain specialist and a permament pain stimulator was implanted which has been a godsend.

I never thought about there being a connection to the POTS. Can you share the type of pain your son has?

Much Peace to All,

Susan

Chronic Fatiuge is defined by a series of symptoms. POTS is defined by symptoms together with he results of an abnormal TTT.

From the CDC website...
A great deal of debate has surrounded the issue of how best to define CFS. In an effort to resolve these issues, an international panel of CFS research experts convened in 1994 to draft a definition of CFS that would be useful both to researchers studying the illness and to clinicians diagnosing it. In essence, in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria:

1. Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and

2.Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours.

The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue.

If you'll notice, dizziness is not one of the most prominent symptoms of CFS, where it is the most common symptom of POTS.

Also, most people diagnosed with CFS do not have orthostatic tachycardia, which is a requirement to get diagnosed with POTS.

There is no doubt that POTS causes fatigue and may be misdiagnosed as CFS, but it is not CFS. CFS can only be diagnosed after all other medical conditions cuasing fatigue have been eliminated and if you have been diagnosed with POTS then that is a medical condition that should exclude the diagnosis of CFS.

I just read in a bunch of places that there is a high prevalence of orthostatic hypotension in CFS. Then why the heck are people getting diagnosed with CFS and not orthostatic hypotension? This is confusing.

Susan S

My son has pain in his upper abdominal region (under his rib cage)and he describes it like somebody takes a soft ball and pushes it into his abdomen.

Mayo Clinic pediatric pain clinic tried a TINS with my son, to see if it helps with his abdominal pain. It didn't do anything, he didn't feel any relief at all. (I forgot what TINS stands for, but it's an electrical device with leads to nerve endings)

Prior to his POTS diagnosis, he had his gallbladder removed here in the Detroit area, and the pain seemed to get worse. During this time, he had a CT scan of his abdomen, and they found "abnormal amount of fluids" but could not explain why.

It turns out, Mayo Clinic viewed the CT scan, and explained it very well. My son has trouble with "pooling of blood in his abdominal region" causing his pain. The blood pools there, and doesn't flow where it should. He doesn't have nausea, but has pain and constipation.

quote:

Originally posted by Sunflower Power:
I just read in a bunch of places that there is a high prevalence of orthostatic hypotension in CFS. Then why the heck are people getting diagnosed with CFS and not orthostatic hypotension? This is confusing.

There is a list of other symptoms that go with CFS. You can get both diagnoses. But just because you have orthostatic hypotension doesn't mean you have CFS. CFS is much yuckier and awful than simple orthostatic hypotension.

And I say all this have had dys, then developing CFS (viral-induced), then getting the orthostatic hypotension very badly, then recovering from the severe orthostatic hypotension, going into remission from the CFS, and back to my dys.

This gets to be a very involved topic. I am actually wanting to avoid a diagnosis of CFS, but it has been floated by a doc or two. My PCP initially thought it was possible, but emphasized that it is a diagnosis of exclusion, and I want to make certain that everything possible is excluded, because once you get that CFS label, it is hard for any doc to look past it.

It does concern me that POTS is often misdiagnosed as CFS. Then how do you get the diagnosis corrected? There are even instances where certain docs won't see CFS patients.

Anybody had experience with this?

Luckily, I do not fit the criteria for CFS, but if I did I would stay far far far away from that label. Not only because of the stigma, but also because the docs will stop looking for a diagnosis more specific than CFS.

It seems to me that CFS is very similar to IBS. It's a way of saying, "we don't know. we give up."

Orthostatic Intolerance is key in POTS and neurocardiogenic syncope (vasovagal syncope).

CFS and Fibromyalgia patients can have a lot of pain and fatigue, but they aren't usually defined as having orthostatic intolerance. (And the Fibro patients will have key points on the body that are very painful when touched/ pushed on. And CFS patients usually complain of overall fatigue and muscle aches.) POTS and neurocardiogenic syncope have lots of fatigue as well, but these patients flunk orthostatic intolerance testing, such as TTT.

Nikole, this maybe a silly question but have you ever read "Betrayal of the brain" by Jay A Goldstein?

I think the key here is noting that both of these condition's acronyms end in an "S". In both cases for syndrome. A syndrome is not a disease or a "medical condition". It is a collection of symptoms. No offense, as I know this will be a touchy subject, but to any of you who have gotten a "POTS diagnosis"; you really have not been diagnosed with anything.

Your symptoms have been given a name. That is all. My analogy is always with fever which is a common symptom we are all familiar with. A diagnosis of POTS is akin to going to the doctors with a fever and having him tell you, you have HTS (Hyper-thermic syndrome) It means nothing and is in essense a throw away diagnosis. If we are lucky, we have a fairly decent drug set to work with to try and treat the symptom, but that is all.

There is no underlying pathology assoiciated with this diagnosis. We simply took a collection of symptoms numerous people had and put a name to it. CFS and POTS are both just such diagnoses. Just as fever can have a number of underlying causes, it is likely POTS patients do not have a uniform pathology in all patients. Some may have an autoimmune disease that attacked their nerves. Others may have had a direct viral insult to the heart that causes a type of heart failure. Still others may have abnomal hormonal responses causing low blood volume. The list of possible causes goes on and on.

Being "diagnosed" with either of these illnesses simply means you meet the criteria (set of symptoms) defined for it. POTS = a rise in heart rate of 20-30bpm or exceeding 120bpm upon becoming upright. CFS = nonremitting fatigue lasting longer than 6 months. The definitions of the various sydromes generally mean if you find the underlying pathology ("Oh look, you have cancer. That is probably making you tired") ("Oh look, you have a bleeding ulcer making you hypovolemic and anemic giving you POTS.) you no longer "have the syndrome". You have symptoms caused by the underlying pathology as that is a much more helpful diagnosis.

In either the POTS or the CFS case, the docs should continue to look for the underlying pathology. In reality though, these syndomes come into being because a significant portion of people develop a similar set of symptoms and no underlying pathology is found. Therefore to communicate and study the group as a whole, the syndromes are made up and (if you are lucky?) you get "diagnosed" with one of them.

If your heart rate goes up too much upon standing and you are extremely fatigue for more than 6 months you have both CFS and POTS. Do you have 2 diseases? Most likely no, as the same underlying pathology is likely causing both.

Spektre

Most doctors, confronted with someone with long-term fatigue and dizziness, will resort to CFS because they don't even know this "definition" from the CDC. I had people tell me i had CFS for three years when the only criterion that I fit was extreme fatigue.

Too bad nobody noticed that was because I had crazy HR's and BP's.. and orthostatic hypotension that was making me tired all the time.

Dr. Stewart in Westchester hypothesizes that many adolescents especially are diagnosed with CFS for this reason, but in actuality have POTS or OI.

I take back what I said about CFS patients not experiencing orthostatic intolerance. Read below.

http://www.immunesupport.com/library/showarticle.cfm/ID/8600

A Matched Case Control Study of Orthostatic Intolerance in Children/Adolescents With Chronic Fatigue Syndrome – Source: Pediatric Research, Dec 10, 2007

by BC Galland, et al.
ImmuneSupport.com

12-28-2007

[Note: Head up tilt testing evaluates how the body’s autonomic nervous system regulates blood pressure/blood supply to the brain in response to the simple stress of changing head elevation. Orthostatic intolerance involves an exaggerated increase in heart rate on elevation that is often accompanied by low blood pressure & dizziness, faintness, etc.]

To define cardiovascular and heart rate variability (HRV) changes following head-up tilt (HUT) in children/adolescents with Chronic Fatigue Syndrome (CFS) in comparison to age- and gender-matched controls.


Twenty-six children/adolescents with CFS (11-19 years) and controls underwent 70-degree HUT for a maximum of 30 min, but returned to horizontal earlier at the participant's request with symptoms of orthostatic intolerance (OI) that included lightheadedness.


Using electrocardiography and beat-beat finger blood pressure, a positive tilt was defined as OI with 1) neurally mediated hypotension (NMH); bradycardia (HR <75% of baseline), and hypotension [systolic pressure (SysP) drops >25 mm Hg)] or 2) postural orthostatic tachycardia syndrome (POTS); HR increase >30 bpm, or HR >120 bpm (with/without hypotension).

Thirteen CFS and five controls exhibited orthostatic intolerance generating a sensitivity and specificity for HUT of 50.0% and 80.8%, respectively.
POTS without hypotension occurred in seven CFS subjects but no controls.
POTS with hypotension and NMH occurred in both.
Predominant sympathetic components to HRV on HUT were measured in CFS tilt-positive subjects.

In conclusion, CFS subjects were more susceptible to OI than controls, the cardiovascular response predominantly manifest as POTS without hypotension, a response unique to CFS suggesting further investigation is warranted with respect to the pathophysiologic mechanisms involved.


Source: Pediatric Research. Dec 10, 2007. [E-pub ahead of print] PMID: 18091356, by Galland BC, Jackson PM, Sayers RM, Taylor BJ. Department of Women’s & Children’s Health, University of Otago, Dunedin, New Zealand.