which is pots and which isnt

[ramakentesh]

Does anyone know where Pots ends and CFS begins in terms of symptoms? I do get fatigue most days = some days i can barely hold my eyes open or keep my head up for periods - but its not like i cant get out of bed at all all day or anything like that and its only when my symptoms are bad.

[briarrose]

One doesn't pick up where the other one stops, it's not like that. My understanding is that they overlap.

This web site offers information about chronic fatigue syndrome (CFS) and its diagnosis and treatment. In general, in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria:

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

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.

http://www.cdc.gov/ncidod/diseases/cfs/info.htm

You might also want to look at the ndrf website and down load the book they offer through there, I believe it mentions this problem.

http://www.ndrf.org/orthostat.htm

[ramakentesh]

The overlapping is the problem because i get a lot of those from POTS. I wonder how many people have been diagnosed with CFS when they actually have POTS?

[briarrose]

I'm told many CFID's patients actually have POTS.

CFID's = Chronic fatigue immune defiencey syndrome

CFID's puts out a very nice website too. They have a web page in which you can take a short questionnaire that they offer.

http://www.cfids.org/about-cfids/do-i-have-cfids.asp

here was my result

These conditions share many symptoms with CFIDS and can often co-exist. It may be more challenging to make a diagnosis of CFIDS if you already have one of these conditions. However, treatment is available for several of these disorders and may help alleviate symptoms and restore some function. Consult our Related Conditions section or a health care provider for more information about these conditions.

Fibromyalgia

Gastrointestinal Problems

Gulf War Illness

Multiple Chemical Sensitivities/Environmental Illness

Orthostatic Intolerance

[blackwolf]

I was dx'd with Fibro/CFS more than 10 years ago. POTS only came along in March of 2000. Unlike POTS, I could work through 99% of my CFS/Fibro symptoms. POTS has completely taken everthing out of me. I was told by a doc in 2001 that many times they over lap and are often misDx'd.

Sorry, I'm not much help.

Blackwolf

[briarrose]

In my opinion this is a tough question to answer. I'm sure even the best doctor's would have a struggle. I asked DR. Grubb this exact question and I can't remember his exact answer, I knew I should have taken a darn tape recorder with me.

But basically they overlap one another.

I went to a chronic fatigue support group meeting a few months back and they corrected me when I started talking about chronic fatigue and chronic fatigue syndrome and they reminded me that there was a huge difference. Yep, they're right. And there is also CFID's.

[DawnA]

I know that POTS can be caused by many things. These include EDS, viral, MItochondrial myopathy, , chiari malformation and CFS. It is common for people with CFS to have orthostatic intolerance, but you can have orthostatic intolerance without CFS. So they do overlap. THis is how I understand it. Does this make it a little more clear.

I too find the POTS symptoms to be the most debilitating. I have alot of medical problems. But I feel the worst when my POTS symptoms are bad. I really feel for those with bad cases of POTS. My heart goes out to them. I am fortunate, because mine has gotten more manageable.

Dawn

[DawnA]

I just receceived the CFIDS Chronicle and thier is an interesting article, "Joint Hypermobility with CFIDS". It was interesting. Here is a quote: " Hyremobility and the physical features and dysautonomia often associated with it, account for virtually all of the diagnostic features of CFIDS and also explain some of the other symptoms often associated with the illness."

Again, all of this overlaps, makes everything very confusing and it is hard to know what is what.

dawn

[briarrose]

This is from the CFID's link above - CFID's of America website

Diagnosis: Orthostatic Intolerance (OI)

Orthostatic intolerance (OI) is the development of symptoms while standing or sitting upright.1 It has been associated with chronic fatigue and immune dysfunction syndrome (CFIDS) in both adults and children.2,3,4,5,6,7

The connection between OI and CFIDS was first introduced in 1995,8 by Rowe and associates at Johns Hopkins University, who identified neurally mediated hypotension (NMH) in CFIDS patients. Since 1995, scientists have learned much more about the broader problem of OI in CFIDS, of which NMH is just one form. It is now thought that many CFIDS patients (up to 97% in some studies) have some form of OI and it seems to be a particular problem in youth with CFIDS. 7,8,9,10

Types of OI

There are many types of OI, but two forms have been linked with CFIDS in research studies: NMH and postural orthostatic tachycardia syndrome (POTS).

NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.2

POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing.1 It is also known as chronic orthostatic intolerance, or COI.11

The blood pressure and heart rate changes in NMH and POTS are accompanied by orthostatic symptoms such as lightheadedness, dizziness, nausea, fatigue, tremors, breathing or swallowing difficulties, headache, visual disturbances, sweating and pallor. Many patients develop swollen, bluish legs, providing evidence of blood pooling in the lower part of the body.10

Testing

Most doctors are familiar with orthostatic hypotension (OH), which can result in fainting (or syncope, pronounced "sin-coh-pee") very quickly after standing, and can be diagnosed with a simple in-office test of taking the blood pressure first while lying down and again upon standing.

Unlike those with OH, which occurs within the first three minutes of standing,12 CFIDS patients with NMH or POTS often have a delayed form13,14 of orthostatic intolerance, meaning that heart rate and blood pressure changes don't develop for many minutes after standing, making the standard in-office test for acute orthostatic hypotension ineffective in diagnosis. A tilt table test in CFS is considered to be positive if a patient experiences orthostatic symptoms and blood pressure and/or heart rate changes, whether or not he or she faints.2 Patients typically undergo a head-up tilt table test (HUT)15 as an outpatient in a hospital or cardiology office to get a definitive diagnosis. Since the HUT reproduces the symptoms of NMH and POTS, patients often feel worse during and after the test. Some testers administer IV saline following the test to reduce the occurrence of prolonged symptoms.

Dr. David Streeten, a researcher who studied circulatory problems, and who collaborated with CFIDS clinician Dr. David S. Bell, favored the use of a prolonged standing test as more representative of a patient's daily symptoms and experiences than the HUT.16 Blood pressure and heart rate are measured every few minutes while patients lie quietly for 30 minutes and again as they stand quiet and motionless for 60 minutes, or until severe symptoms develop. It is very important that either this test or the HUT be done under close medical supervision, as serious complications, including brief periods of very slow heart rate, can occur during the test.

Pathophysiology

There are several hypothesized causes of NMH and POTS relevant to CFIDS; regardless of the cause, all lead to inadequate blood circulation that may reduce the amount of blood getting back to the heart and brain. Patients may have low blood volume throughout the body17,18,19 or their blood may pool excessively in the extremities10,11 or both.

When healthy people stand, gravity causes about 750 ml of blood to fall to the abdomen and legs, resulting in a decrease in blood flow to the brain.20 In patients with POTS, cerebral blood flow decreases more prominently while standing.21 In one study of adolescents, the amount of blood that pooled in the legs was highest in CFIDS patients and second highest in POTS patients, as determined by measuring the circumference of their calves while lying down and again while standing.7

When the heart receives less blood from the limbs during standing, the brain releases chemicals and alters the pulse and blood pressure in an effort to get the blood flowing upwards again. When this chemical response is accentuated, as in NMH and POTS, patients can develop a rapid heart rate (tachycardia), low blood pressure (hypotension) and orthostatic symptoms (see "Types of OI" above). CFIDS patients can have either NMH or POTS, and some have both conditions.

Researchers have identified several physiological abnormalities in CFIDS patients that are consistent with autonomic nervous system problems such as NMH and POTS. In five studies, adults and adolescents with CFIDS had elevated heart rates at rest compared to healthy and sedentary controls,5,7,9,22,23, although two studies found no difference.2,24Heart rate further increased when patients underwent a tilt test, a finding consistent with POTS.5,7,23

In addition, three studies - one in adults5 and two in adolescents11,6 - found that heart rate variability is significantly reduced in CFS compared to controls. This means that instead of having a heart rate that changes appropriately when faced with orthostatic stress, many CFS patients have reduced modulation of their heart rate, suggesting impairment of the autonomic nervous system.11 In contrast, one study of adults with CFS found that heart rate variability is similar to that in controls.25

Treatment

Effective treatment for NMH and POTS in CFIDS must be individualized. In general, treatment for POTS and NMH helps greatly to alleviate some symptoms, but rarely fully resolves the CFIDS.

The first line of treatment should be non-medical interventions, such as increasing fluids and salt, tilting the head of the bed up a few degrees, wearing compression garments (such as support hose, girdles or abdominal binders), and learning to avoid and cope with things that can make OI worse (such as standing in long lines, being in warm environments and eating large, heavy meals).

If these are not effective, doctors may introduce pharmaceutical treatments such as fludrocortisone (Florinef) to treat low blood volume, and vasoconstrictor medications, including methylphenidate (Ritalin), dextroamphetamine (Dexedrine) and midodrine (ProAmatine) to treat blood pooling, and sometimes drugs to block the release or effect of epinephrine and norepinephrine. Selective serotonin reuptake inhibitors (SSRIs) have been used with some success in patients with POTS, and one randomized trial has demonstrated the efficacy of paroxetine (Paxil) for those with recurrent syncope due to NMH.26

Although randomized trials of treatment for POTS have not been performed, other randomized trials in those with recurrent syncope due to NMH have demonstrated efficacy for atenolol, midodrine and enalapril.27 It is unclear whether these medications will work in CFIDS. Intravenous saline can help reduce symptoms, especially following HUT or other acute exacerbations of symptoms. Common syncope treatments beta-blockers and clonidine may be less effective in POTS and may reflect different causes for POTS and simple fainting.

Conclusion

Further research is required to determine how orthostatic intolerance is involved in CFIDS. It is clear from past studies that OI is associated with CFIDS, but the degree and meaning of that association is still a focus of vigorous research.

[Evie]

Does management of POTS tend to minamise CFS symptoms?

Hi! sorry if my question is naive. I was only diagnosed a few days ago with a form of Orthostatic Intolerence.

The neurologist seemed to mostly give me info on POTS and said that even though i dont get Tachycardia i can still have it. My other specialist called it 'autonomic syncope'. From doing my own reading i think it may be more NCS as i dont get palpatations of the heart (or at least i dont feel them) yet i cant get out of bed before around 10-11 most days or i just faint after two minutes and them am quite bad throughout the day.

I have had CFS for about 6 years and the specialist said that she thinks that POTS is the cause. So we are hoping if i treat the POTS then i will 'be better' so to speak.

From reading on here it seems people tend to suffer from both and i was just wondering if treatment of one tended to help the other or not?

I realise everyones body tends to be different but was just wondering about other peoples experiences.

Thanks

[cnm1]

I suspect that the diagnosis, in part, depends on the type doctor you see. My daughter, Rachel, was originally diagnosed with CFS and we went to see David Bell in NY. He recommended seeing Blair Grubb - that a lot of CFS is autonomic dysfunction. Here is a link to is newsletter when he describes CFS as a dysautonomia. He recommended that once Rachel turns 18 that I take her to Vanderbilt.

http://www.davidsbell.com/LynNewsV1N4.htm

Louise

[briarrose]

I was diagnosed with CFS before POTs and I wouldn't let the doctor write that in my chart because of the way you get treated with that diagnosis. After I was diagnosed with POTS and they started to manage my symptoms I mostly over came the severe fatigued that kept me from doing so many things. So my answer to you would be yes.

I think that you should probably read more about Dysautonomia and NCS. If you haven't experienced tachycardia maybe you don't have POTS but one of the other things that are closely related. Do you have a blood pressure cuff? Your early morning problem might be a drop of blood pressure and not tachycardia at all. You can also research hypotension, orthostatic intolerance, etc.

Mighty mouse has a whole website at the top of the DINET page with many good articles that you can read.

[Evie]

Thanks for your replies

I think i will write a thread introducing myself and explain my symptoms and see what people thing.

I assumed that the dr would have had my results in front of him and would not have pointed me in the dircetion of a POTS diagnosis if there was not some form of heart rate increase yet since i dont feel it and on further reading i think i may have NCS.

Sorry im not sure what a blood pressure cuff is? Is that what they use to measure it? I was in hospital last week and the lowest they managed to measure my blood pressure at was 60/40 before i fainted. I know my blood pressure does drop when i stand. Yet in POTS your heart rate rises is that right? (I have been reading everything i can yet i am a little overwhealmed by it all)

glad to hear that you recoverd from your chronic fatigue symptoms briarrose!

you are right that CFS is a tough diagnosis to deal with. I was excited to get rid of that label heh. Although from the sounds of it Othostatic intolerence syndromes do not appear to have that much more recognition

[Eillyre]

I won't reiterate what everyone else has mentioned already, except that all of the research that I've done has considered POTS and CFS as frequently overlapping, but not necessarily always. Not everyone with CFS has POTS, and not everyone with POTS has CFS (very possibly have fatigue, but not necessarily the syndrome).

Dr. Low said that in my particular case the POTS symptoms would probably be easier to treat than the CFS symptoms (especially because doctors still know so little about the syndrome). Although the Mestinon might lessen some of the CFS symptoms, it probably would not really resolve them because the two conditions are not by any means identical. Many of the precautions (fluids, sodium, etc.) do indeed help both, though.

Evie, to give you the non-technical version , a blood pressure cuff is a length of thick, layered fabric that wraps around your upper arm. A long, narrow tube connects it to a small hollow, egg-shaped rubber ball which you hold in your hand. As you squeeze the little ball, the cuff begins to constrict your arm. You pump the cuff to an appropriate tightness and then watch the little gauge above the rubber ball to determine what your blood pressure is doing. Frequently in hospitals they check your pulse around the same time. Do you know any medical people who might be able to lend you one and supervise until you can do it accurately yourself?

Angela