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Four types of Fatigue May 12th CFS/ME Awareness POTS

Blog entry posted by George, May 12, 2012.

POTS
The current definition of POTS is as follows.

Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia (Your autonomic nervous system becomes messed up and no longer sends the right signals to the rest of your body)
- to be more specific orthostatic intolerance, in which a change from the laying position to an upright position causes an abnormally large increase in heart rate (how fast your heart beats), called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively. Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down.

A simple way to put it is that your heart feels like its going beat right out of your chest, there is often pressure or tightness across the chest area and your breathing becomes difficult or “labored”. In addition you feel better lying down and when you try to sit up you experience nausea, dizziness and a feeling as if gravity is pulling you back down. Once sitting up a person stabilizes but then standing causes nausea, and dizziness and again it feels as if gravity just makes you want to drop right back down.

The fatigue associated with POTS is extreme and can be fatal if not handled properly.

Who gets it:
Nearly all ME patients have problems with autonomic nervous system and most will experience bout’s of POTS off and on through out their illness. The difficulty is that POTS comes and goes. Many patients do not recognize the fact that they are experiencing POTS for several days and patients are often so ill during the time they are having a bout of POTS that they are unable to go to the doctor.

What you can tell your doctor:
General practitioners are not well versed in POTS or in the various medications that are available to treat it. According to the Dysautonomia Information Network many GP’s don’t know enough about this illness to avoid doing harm by sending patients to cardiologist who haven’t completed training or are not familiar with the illness.

Check out dinet.org for more information and a list of doctors who are competent in treating this problem. A good doctor able to deal with POTS can really help the ME patient live a much better quality of life.
Terms you doctor is listening for when discussing POTS:

- Difficulty sitting or standing
- Lightheadeness, vertigo
- Extreme fatigue
- Excessive thirst
- Headache
- chest pain or discomfort
- Cold hands and feet
- Frequent urination


What can be done about it:
Until you can see a competent doctor there are a few things you can do to help with symptoms. Taking a CoQ10 supplement at one mg per pound of body weight, keeping hydrated and make sure to drink at least one 8 oz glass of electrolytes per day is helpful. The most important thing is to get up and walk around for at least a few minutes during bouts of POTS. The urge to sleep can be overwhelming and lead to dehydration and death.

The most common drug to help patients with POTS is Florinef which increases sodium retention and increases blood volume and pressure however; this can be a problem for people with high blood pressure. Beta blockers also work by blocking the effects of epinephrine and norepinephrine release by the ANS but they can have extreme side effects. A competent cardiologist is a must for dealing with medication related to POTS.

One of easiest solutions is the infusion of saline on regular schedule to keep blood and sodium volumes at optimal levels this is sometimes overlooked by doctors as it’s not the easiest solution for them. Don’t be afraid to suggest it!

Summary

One of the biggest challenges for persons with ME is separating out the various types of fatigue, and dealing with each one to get the most out of life. In addition to knowing and understanding the different types of fatigue, people with ME often face days and weeks of mixing and matching different types of fatigue one on top of the other.

But if we understand nothing else about our illness it’s important to understand that each type of fatigue is unique and has its own underlying biological cause. The shear volume of multisystem failures that ME/CFS patients deal with on a day to day basis is what robs us of the opportunity to engage fully in life. Once people in the medical profession begin to understand this then we just might get moving in the right direction. In the mean time we can work toward creating a language the really describes what is going on with ME/CFS.
merylg and RustyJ like this.
  1. George
    Hey guys, between the POTS, the PEM, the occasional PENE (earned, big grins) and a bad flare, I just keep reactivating the EBV, I really needed a long down time. I missed you guys too but just couldn't hang. Separating out the 4 distinct fatigue types really helped me get back on my feet so I wanted to share. I live in the sticks and the doc's here struggle with treating basic illnesses, ME they just completely freak on! (snort)

    Don, interesting information, thank you for taking the time to share. I expect that a lot of the underlying causes that keep ME sufferers down can be treated if someone would sit down and suss out the different problems and deal with the one by one. A big one that I left out was sleep problems and the attendant fatigue problems caused by that. If each component of the fatigue was treated it would lighten the load and most of us could probably get on with something resembling a life. (grins)

    Hey biophile how ya doin? I like your approach with the heart rate monitor. It would be great to have someone write about the overall experience. I look forward to readin' it in the future.

    Alex (squeals of doggie delight!, Big grins) Very good points, (as always, grins) about what works for one form of disautonomia doesn't work for another. That could probably be it's very own series. The 'dinet.org' has got some great break downs on that. There is also another group that has a really fact filled page on all the different aspects of disautonomia I'll see if I can find the link.

    Googsta, love your avatar! My Hero! Thank you for the absolute highest praise, 'cause clear and easy was what I was aimin' for and if I achieved that I'm going to do the Snoopy dance. . . . . . . . . in my head. (grins)
    Otis likes this.
  2. Don Quichotte
    Just a thought that crossed my mind, while reading this.
    I once diagnosed a patient with POTS . I didn't know anything about this entity at that time, but some of her symptoms reminded me of a rare condition called-familial dysautonomia.
    I am saying this because this is a known and well-recognized condition that most physicians know very little about ( I happened to do part of my training as a medical student in one of the centers specializing in it so knew more than the experts who saw this patient and were puzzled by her symptoms and thought it was "psychological".
    Maybe you can get in touch with one of those centers and see if they can help with thinking of further research/treatments. http://en.wikipedia.org/wiki/Familial_dysautonomia
    George likes this.
  3. biophile
    Last year I purchased a blood pressure heart rate monitor and did some experiments. I'm still in the process of writing a blog of the results but it seems that I have POTS but not NMH. I have long suspected POTS but without evidence of NMH I had wondered why I still experienced symptoms of reduced blood flow when upright or standing up, perhaps normal blood pressure in the body did not mirror blood flow in the brain, but as George wrote in this blog: "Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively." That may explain it!
    George likes this.
  4. alex3619
    First let me say Welcome Back George, we missed your wise doggy view of the world.

    I would like to expand on this point by adding that some without POTS have Neurally Mediated Hypotension. Thats my diagnosis. When I get worn out too much I start passing out. My pulse does not race, I lose blood pressure. The trigger is moving up - standing, walking up stairs, whatever. The blood rushes out of my brain and I am out cold till after I wake up lying flat. This is harder to treat as electrolytes or saline are not always a good idea. Looking forward to seeing more of your views, Alex
    George likes this.
  5. Googsta
    Excellent George, easy to comprehend for the general public. It answered many questions I have concerning POTS also.
    George likes this.