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New w/ some questions:


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Hi, I'm new and for a long time I've thought i'd had chronic fatigue syndrome since becoming acutely sick in 2000. I have many of the symptoms such as cognitive dysfunction (bad memory, brain fog, concentration/sense of awareness etc.) fatigue, exercise intolerance, dizziness, shortness of breath, feeling cold, tingling in my extremities and others I'm probably forgetting. Since this is so bad, and there is so little treatment, I always try to browse through what look like new or interesting research articles which might be helpful or give me a better understanding of what's happening. Recently I've found a lot of articles which linked CFS and POTS by having similar or identical heart rate, blood pressure, and EKG interval times. In several of the articles it seems the authors seemed to be arguing that CFS and POTS were either the same or very similar. There also is a case report of a person with CFS being very much helped by midodrine.

I don't think I would quite meet the definiton for POTS of having an increase in heart rate of 30 beats or more upon standing, as they did this test on me once, (lie down and then stand up) and though the first time must have been abnormal in some way, though they didn't tell me in what way or how much, the second time must have been relatively normal as thats what the neurologist told me the result was.

While none of the doctors on the list are within driving distance for me, my own doctor is generally pretty open-minded to things that might be helpful for treatment, but I would probably have to track down good, relatively concise, information.

An article:

*that decribes the similarities between POTS and CFS, and summarizes the treatments for POTS (esp, those that may also be applicable to CFS).

*that describes the varying subtypes of POTS and each's effect on how it is treated?

*what you've found the most helpful resources for more information

*any other information I should have handy?

Also general questions related to things I've read on this site:

*I've always had trouble blowing up balloons (how embarrassing :rolleyes: ) since a little kid, which I've read is similar to a valsalva maneuver, would that give me an indication as to if I have some degree of POTS? or a particular type?

*Since being sick I've had severe post-exertional fatigue... would that be an indication of POTS or a specific type? Maybe that the sympathetic nervous system is overactive (is that the case in all type of POTS?)

*My dad has severe IBS, especially after eating, and had a slightly shortened PR interval, the interval of conduction of the impulse from the atria to the ventricle, could this be due to some disorder of the autonomic nervous system?

*Have most people found the "tilting the head of your bed up" thing to be helpful?

Thanks! Sorry for any especially dumb questions! Oftentimes its hard for me to tell if something applies to me enough for it to be useful for treatment, or if i'm just grasping for straws...

Thank-you,

john

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Hi there,

I started out with a diagnosis of CFS and Fibromyalgia. It took almost two years for the docs to make the connection to POTS. I kept telling them that I was short of breath and that my heart raced, yet, when I was examined (usually sitting or laying down) I was fine. It was by fluke that the POTS was found during an asthma test. I had one of the finger heart monitors on and when I stood up, my heart rate went through the roof. The technician happened to catch it and he went to get the doctor. They had me sit and stand several times and then finally sent me to a cardiologist for a tilt table. If it wasn't for that technician, I would still be undiagnosed. Like you, I have read several articles of docs now linking chronic fatigue to autonomic dysfunction. If you read the symptom list of CFS you will see that many of our symptoms are the same. It is an interesting connection. Listen to Ernie and try for some autonomic testing.

Ann

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I was told i had CFS as well - although i couldnt work out why since my immune system wasnt abnormally weak, and I had never heard of CFS patients who trembled all the time when standing or got dizzy and had heart palps.

The test you had isnt really good enough - a proper TIlt Table Test should also measure the narrowing of arteries in your neck upon standing, norepinidrine levels upon standing as well as heart rate increments.

POTS goes up and down, so you might have had a good day when tested. A good way to pass the test is to drink two or three beers the nigth before - i did this because it always makes my symptoms more obvious - so that i was sure that I would be at my worst when tested. (sounds crazy, but i wanted to be sure i wasnt wasting my time)

Some links that I would very much suggest for you are:

Bloodvolume and CFS (POTS often have low blood volume)

http://www.pediatricnetwork.org/medical/CF...cbloodvol99.htm

http://www.findarticles.com/p/articles/mi_...103/ai_53668212

http://www.nymc.edu/fhp/centers/syncope/or...intolerance.htm

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

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John,

Hello! Welcome!

I also have been diagnosed with POTS and CFS. It is so hard to say what symptoms are POTS and which ones are CFS....

I do know that it is common for CFS patients to have trouble with orthostatic intolerance, etc.

Good luck with your research!

Lisa

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Hi, John ... You asked a lot of good questions ... You might check out the many links MightyMouse posted in her "answers to common questions" post that is pinned at the top of the Forum general discussion main page. I think this link will take you there, but you can access it any time. There's a lot to learn ... I hope this leads you to some answers.

http://dinet.ipbhost.com/index.php?showtopic=1954

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Welcome John! First remember no question is ever dumb. The only one i was going to respond to was post exertional fatigue. That is a hallmark of cfids and fibro. I personally believe all these disorders have an autoimmune link and all autoimmune things tie in together, so you will find a lot of overlapping symptoms. I am hopeful the more they find out about cfs and fibro, the more they will eventually be able to link to OI. The only other thing is people on here can find really good links, so follow through on that. Good luck! morgan

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Thanks everyone for your kind replies. My computer totally crashed and wouldn't work with the standard tricks (safe mode, last known good config., hitting with a hammer :) etc.) so I had to wait until my brother came home from college for the wkend to borrow his. I'll most definately print out alot of those links.

much appreciated,

john

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john,

i too was diagnosed with cfs for the first 4 years of my illness. i had a tilt test fairly early on, but was told that the neurally mediated hypotension was secondary. i continued to pursue other options and now have the diagnosis of nmh with pots. cfs is in there too i suppose, but not what we are focused on.

this letter is a bit old, but i really like how he argues for paying more attention to OI conditions and not just labeling things as cfs...

hope it helps.

http://www.ahmf.org/g-rowe.html

welcome and all the best on your healing journey...

emily

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Thanks Emily,

I am somewhat familiar with the research of Peter Rowe, and the great work that people like he and David Bell have done on orthostatic hypotension/loss of blood volume in CFS was one reason, besides having totally consistent symptoms, i thought NMH/POTS was definately something to investigate as a major contributing factor, or cause?

One symptom, or finding, that I've always considered strange, is that after any pressure, usually my skin makes indentations, or creases, that don't go away for a long while -like the blood is not getting there, or not leaving, or maybe something else- and oftentimes also gets flushed with very little pressure. Does anyone have those things themselves or know if they are found in POTS, or in a certain type?

thanks,

john

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