Chronic Fatigue Syndrome

[dizzygirl]

Is CFS considered a totally seperate issue from pots? I guess im asking can you have pots AND cfs?

Also.. for those that have CFS.. and fatigue from pots.. what do you do to help combat this?

and how does this exactly work.. i mean do chronic illness's causes cfs? Or is cfs something that is kind of there BEfore a chronic illness jits you? how exactly does it work?

[flop]

Hi Linda,

you've asked some good questions but I don't think any of them have concrete answers, well not yet anyway. As far as I understand it there have been studies on patients with CFS which showed that some (perhaps about 20% - can't really remember the figures) met the diagnostic criteria for POTS. The interpretation would be that in those patients the POTS caused the CFS (of course it could always be the other way round - chicken and egg situation).

So some but not all CFS patients have POTS, similarly I think that some POTS patients also get diagnosed with CFS. I'm not entirely sure how that works as I thought that CFS was a diagnosis of exclusion and that being diagnosed with POTS would mean that you hadn't "excluded" all possible other diagnoses.

I wish that someone knew the "cure" for the excessive tiredness, no matter what diagnostic lable it is given. There are many opinions about rest versus exercise. Personally I can say that resting too much makes my fatigue worse. Also that pushing myself too hard, especially physical exertion, really wipes me out for several days afterwards. I think that it is probably wise to try to find a balance where you can push yourself within your limitations and gradually expand your ability to exert yourself.

Flop

[yogini]

Hi Linda,

I don't know a ton about CFS, but I believe it's more than just being tired all of the time - I think it involves a "syndrome" of other symptoms, such as fevers, sore throat, etc. Most people with POTS are probably tired a lot, but I do think CFS is separate from POTS...though many people have both conditions, and both conditions can have a common cause. Confusing, I know!

-Rita

[Sophia3]

mY "cfs" DX Came in 1985 when they called it adult chronic mono...interfered with social life and had to work odd office hours (late mornings until evening) to get enough sleep. THEN the fatigue and insomnia were unbearable by 1990.

In 98 confirmed to have autonomic dysfunction by my doc..and when Grubb saw it said the tilt table was a no brainer POTS. Grubb says POTS can cause horrible fatigue like running in place and have the stamina of somebody with congestive heart failure. some of us live with this fatigue everyday so YES..POTS is CFS in some people.

CFS is another UMBRELLA of terms to cover MANY ILLNESSES same as ANS problems. But in some of us the POTS is obvious and the CFS UNREAL.

This CFS question is SO OLD I just figured many old timers on this board and another site knew of the CFS/POTS OVER LAP. but I started getting the CFIDS CHRONICLE back in 1991.

[Sophia3]

I dug out my old NDRF tapes from 2000 and Grubb and the other docs mention the fatigue/POTS issues. Might be worth watching those if you have them or borrowing them from somebody. Still worth getting to keep on hand, too, though POORLY EDITED! SHEESH, seeing GRAPHS on your TV screen for way too long at times can drive you NUTS but the speakers are great!

The information from Dr. Streeten is great, and Grubb, and Robertson is on there, and Low, and Mathias from London, Goldstein, and that spanish doc I COULD NOT UNDERSTAND at all and wish they had close captioning lol.

But I had forgotten all the great info Grubb gave in his talk!

Hard to believe Dr. Streeten died shortly after the tapes were made but am glad I have him on video ...he was such a sweet, dear man. Plus it's cool SEEING and HEARING the docs we read about on the message boards.

IF ONLY more dods were like he and Grubb.

this link mentions CFS and OI as well...been posted on some message boards before

http://www.phoenix-cfs.org/Orthostatic%20I...20-%20Types.htm

[LilySnick12]

According to my daughter's Doctors at Mayo Clinic POTS and CFS are two different diagnosis.

My daughter does have both Pots and CFS. The symptons are similar in the fatigue and tireness.

She does take naps whenever possible. The key for her is to pace herself. If she is overly active and pushes herself, she'll be down for days after. She has been having success with massage therapy and is also getting weekly injections of b-12, b complex, which does help to boost her energy level. She also is monitored for annemia.

She pushes fluids mostly water, as gatorade and the additional salt intake doesn't appear to be much help for her.

[kmpower]

According to Dr. Paul Cheney (I think he is at Duke), they would be connected. He is really a specialist in chronic fatigue, but now is testing his patients with tilt to measure specific cardiac dysfunctions. His key diagnostic criterion is "Isovolumetric Relaxation Time" (IVRT) on tilt, which is a function of the energy of heart muscle cells. It is an energy measurement more than a heart measurement. His treatments are multifaceted depending on what is wrong in the energy systems of the patient.

I learned the above in a recent interview with Dr. Cheney at the Functional Medicine Institute.

OLL

[Sophia3]

Well the top ANS docs on the NDRF conference tape believe that FATIGUE is a huge issue.

I have LIVED it and been unable to work for 17 years.

I am not going to debate a doc saying it is NOT the same thing as POTS FATIGUE is the NUMBER one gripe for most of us!?!?! who can no longer work.

Perhaps the doc is worried about SEMANTICS but Johns Hopkins found CFS pts who flunked Tilt table test becaus ehty have NCS.

OBVIOUS FAINTING is recognized by docs. POTS aka O.I. is not. But trust me, as Grubb says and other, walking around with a racing heart exhausts the body.

BUT Not EVERYBODY with CFS as ANS issues.

Not all with POTS have fatigue issues..the milder cases who can work or work part time, and go on vacations and such.

[lthomas521]

Chronic fatigue syndrome means more than just chronic fatigue. In fact, Dr. Cheney calls it CFIDS, for chronic fatigue and immunodeficiency syndrome. If you don't have the additional symptoms that make up the syndrome, then you don't have CFIDS.

You can have chronic fatigue as a result of another illness, such as POTS. If you have chronic fatigue for no know reason it is called idiopathic chronic fatigue. (Idiopathic is doctor-speak for "of unknown cause").

Back in 2003, some researchers at UMDNJ found that people who are severely disabled with CFIDS all had a form of heart failure. Their hearts couldn't relax properly between beats (which, surprisingly, is the most energy-consuming part of the heartbeat). As a result, their cardiac output (volume of blood being pumped per minute) was very low. In POTS, the heart may not be able to refill between beats because the blood isn't getting back to the heart fast enough (e.g., because of low blood volume). So the result, in terms of how the person feels, would be similar in some respects in both cases.

As for working, I have been able to work throughout this POTS ordeal because I have a very sedentary job. I can do desk work all day long, but a few minutes of light housework would wear me out, because of the orthostatic stress involved.