Cfs & Dysautonomia

[Lulu]

Ok, y'all:

CFS &/or Dysautonomia????

So are they the same or different or related in some way medical science hasn't figured out? I read Sophia3's posts about it & I'm just more confused.

For YEARS in my twenties, before I was diagnosed with NCS and later POTS, I kept trying to tell my doc I thought I had CFS. I had read about it and had all the symptoms. My doctor at the time was great, but he wouldn't "settle" for that dx and had me do LOTS of different testing and then sent me to an infectious disease specialist, who then sent me for TTT. And shazam! I have dysautonomia and this explains my symptoms.

Now, here's why I'm confused. My then-doc said that CFS was like a 'wastebasket" dx. That it really didn't explain why all these ppl had all these sxs, just grouped them together. When I found out I had a form of dyautonomia (and how long it took me to get that dx and be taken seriously) I kinda understood why CFS was thought of that way by this doc. I just thought that folks w/ CFS really had some form of dysautonomia and hadn't been dx'd properly/thoroughly yet.

Now, I'm unclear about this, hoping someone knows. Sorry to be so dense about this.

Peace and light,

Lulu

[MightyMouse]

Dysautonomia has clearer medical definitions:

POTS is defined as:

"excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising."

from http://www.dinet.org/pots_an_overview.htm

NCS/NMH is defined as:

Neurocardiogenic syncope is a temporary loss of consciousness associated with a drop in arterial blood pressure, quickly followed by a slowed heart rate (Grubb & McMann, 2001, p. 133).

http://www.dinet.org/NCS/ncs.htm

Pure autonomic failure and multi-system atrophy (msa) also have clearly defined diagnostic features.

Where it gets a bit tricky is that there is some overlap in what folks might classify as CFS symptoms: exhaustion and non refreshing sleep being the biggies, as well as nausea, brain fog, etc.

Here is the current standard for the diagnosis of CFS

http://www.ncbi.nlm.nih.gov/entrez/query.f...8&dopt=Citation

"(1) fatigue of at least 6 months' duration, seriously interfering with the patient's life; and (2) without evidence of various organic or psychiatric illnesses that can produce chronic fatigue."

So, the symptoms of CFS can't be accounted for by another known medical problem or by psychiatric diagnosis. Some people here have both CFS and dysautonmia. I think that by doing some reading, you may have clarification.

Additionally, keep in mind that some doctors may give you a CFS diagnosis too quickly--before doing enough testing to figure out if you have an underlying cause for your symptoms. This is why your doctor called it a "trash can"--it's where the toss people that are "difficult cases" or when the doc is not interested or creative enough to figure your issues out. This is what was the case for me--I had a CFS dx years and years before they figured out I have EDS and POTS/NCS. However, if they'd have put it all together that the exhaustion, sweating, odd bp readings, gi problems, joint problems, bruising, muscle spasms etc were all related to each other.

Nina

[MNsue]

I found you post so interesting. I was 24 when I was diagnosed with CFS after Mono now almost 16 years later I have been diagnosed with POTS after a tilt table test done about one month ago. When I first had CFS I remember feeling sick, having fevers, chills, and sleeping for days and weeks. This went on for at least 5 years. I don't remember having a racing heart until after the birth of my first daughter.

I think my first POTS episode was about 5 years ago. They thought the racing heart was due to hasimotos thyroiditis. I was very ill for 1 year after the start of this episode. Unfortunately no tilt table test was done, and since there is no real treatment for CFS I was sent home without any help. I finally got better after having a terrible asthma attack and was treated with a course of prednesone.

I had about 3 years of good health until this latest episode. I started another flare in December, and have been seeking answers since.

I think that I have had both CFS and POTS, but the CFS went away and the POTS stayed. I don't have the same CFS symptoms anymore.

I was also told that CFS is a diagnosis given when they can't explain why you are ill.

Good luck with your search for answers.

Rhonda

[Patricia]

Hi LuLu,

To answer YOUR question tonight I had a serious virus that left me disabled. I was diagnosed with CFS for a long time and then took part in a Johns Hopkins study on CFS! that found many of us have dysautonomia. When I looked back at my symptoms, I always had POTS from day 1 after my virus, so indeed for some, what is what or do you have both? I have immune system bloodwork that is abnormal that is considered diagnostic for having CFS. I read that Dr. Grubb had alot of patients with CFS go to him looking for a diagnosis of dysautonomia after the study, and although some were very ill, not all tested positive. Until there is an actual blood test for CFS I do not think any of us will know for sure. That is my thoughts on it anyways.

Patricia

[Jacquie802]

Hi,

Ever since I had a viral infection that has left me with POTS I have been very fatigued....I'm also curious whether my fatigue is POTS or could also be CFS....hmmm...

Jacquie

[Sophia3]

Just to muddy the waters!!

There is a subset of CFS pts that have dysautonomia

There is a subset of dysautonomia pts that have fatigue or CFS.

Fatigue means you are super tired thru the work day but can function and work.

CFS as a rule means more DEBILITATING, disabling fatigue but there ARE VARIATIONS on a theme...same with ANS problems.

I was dx by an immunologist back in early 1980's..long before CFS got it's name. I was teaching aerobics and feelingn like **** and going home to sleep 14-16 hours. back then I was told I had Chronic Adult Mono.

I could work but had to 'work around the illness'...work odd hours, get LOTS of sleep and diet controlled it too. Then all heck broke lose in late 80's and my will power, and ability to cope with a life time of stamina issues and motion sickness!! and fatigue, just seemed to "take over my body". My affirmations,vitamins, diet, and laugh therapy and sleeping long hours, no longer "kept me going" socially and then workability.

(ALWAYS got sick in the car and AMUSEMENT parks were not amusing but horrifying to me so never went more than 2 times..I am more dizzy and nauseated now than ever..keeping weight on is an issue. I was a FORMER FATTY/thin person before the ANS hit on top of the CFS. I had 4 sizes of clothing in my closet. Three sizes i vascillated between and the 'skinny' clothes I dreamed about. Now the skinny clothes fit but are 20-25 years old!)

The pain of all this (no pun intended) is that Dysautonomia is "not a disease" per se, but a cluster of symptoms brought on suddenly or that we are born with. There are different underlying causes in EACH of us. Genetic, viral, chemical, etc.

And after a lifetime of being "a wimp" and progressively getting worse (though perimenopause can kill your will power and MAGNIFY your fatigue) Grubb told me it will worsen things and sometimes the doctors just can' "fix us" but try to keep us 'comfortable' at home.

So POTS = fatigue in most pts..from annoying to very bothersome, to disabling symptoms.

CFS+ is the same way. Are they connected? only if you have orthostatic issues with your CFS.

Many with CFS do just FINE standing still as cashiers or working on their feet all day. but may nap or crash for sleep when they get in the front door at home.

CFS CAN be POTS.

CFS can have nothing to do with POTS.

POTS folks can have energy to work, play, travel, and whatever with meds and rest. Others, no matter what meds and rest and fluids, can barely get out of their jammies and brush and floss their teeth!

I was one that diet and sleep controlled my fatigue for years. YEARS. Then after a tubal ligation, the INSOMNIA started randomly and to this day is CHRONIC. Years of sleep deprivation + documented unrefreshing sleep=CFS and in more recent years, FM for me. Many of you who have horrible fatigue issues probably have quality sleep problems.

To goober that up, many think ANS problems cause a multitude of sleep problems. SO it's the proverbial which came first, the chicken or the egg. Or the Abbott and Costello routine of "who's on first, what's on second, I dunno is on third base" ??!!

So the more we learn how the body works, and the different overlapping illnesses, the more confused we can get.

I hope this post helps more than it confounds.

[Be Still]

Dr. David S. Bell is a prominent, long time researcher for CFS, and a real live human being (like Dr. Grubb.) His 01/05 newsletter states: "CFS, for most persons, is a post infectious dysautonomia."

From his October 2004 newsletter:

"In this paper, I would like to suggest that the central and most disabling symptom of CFS is not fatigue but the symptom of orthostatic intolerance."

http://www.davidsbell.com/LynNewsV1N3.htm

The article also mentions that 'fatigue' is not an accurate word for what we are experiencing as 'fatigue' is a state of recovery (following exertion) which resolves with rest. the best word to describe what we experience is orthostatic intolerance.

[The above was edited in consideration of fair use of copyrighted materials. ]

The Canadian definition: http://www.cfids-cab.org/MESA/ccpc_p.html

Hope this helps.

[Sophia3]

EXCELLENT Article, Be still!

I stll am sorry the late great Dr. Streeten died...he came OUT of retirement due to the studies of Bell and CFs.

I used to have more articles than I do now on this subject.

Dr. streeten had seen this for years and called it Dysautonomia.

Thanks for posting this.

Great stuff.

Oh and brain fog has been an issue my WHOLE LIFE and we blamed it on low blood sugar. In school I would do worse on tests than I expected and was a horrible typist..The Brain fog has SO WORSENED with female hormone issues it is up there with the crushing fatigue somedays~!!

If you have any links to this, please list or PM. I used to be on this mailing list of Dr. bells and wondered what happened...been several years.

p.s. in the earlier years of this junk I got the CFIDS CHRONICLE and LOVE that periodical.

It save my SANITY AND LIFE in 1990 with an article about 'sleeping pills not working' but Klonopin and antidepressants did!! It also MIRACULOUSLY wiped out major allergy problems instantly. I had gotten allergy shots and the Klonopin and I forget the original anti depressant eliminated the allergies!! for GOOD!

after 2 years, allergy shots were NOT helping...

[Evie]

These are the cfs criteria:

cognitive dysfunction; recurrent sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain; headache of new pattern; unrefreshing sleep; and post exertional malaise lasting more than twenty-four hours

6 years ago i had all of them... now i only have cognitive dysfunction, muscle pain, headaches, unrefreshing sleep (but much better than it use to be) and exertional malaise which can last a few hours or a month.

When i read things like this i realise how much i have improved! I also realise how far i have to go..

Personally i have found that CFS feels quite different to POTS/OI. When i have OI i tend to feel dizzy, spaced out and faint. With CFS i dont feel spaced out as much as exghasted (sp?) in pain and foggy in the head ... like i dont have the energy to think in the first place, i get kind of numb like i am permenantly on the verge of sleep.

It can even come down to different ways of feeling nausea .... i use to constantly feel car sick now that my CFS is better i tend to only feel nauseas when i faint or in the mornigns when my blood pressure is low.

I realise this does not make much sense, but as a paitient who has both i tend to be able to put my feelings into different catorgories of either CFS or POTS. I am by no means have a medical reasoning behind it though .. just my personal perspective.

That article was great! thanks so much for copying that

[Sophia3]

Before I "Knew" what OI was, I would gripe to my former "CFS SPECIALIST" that I feel better when I lie down or am reclined. I even flat out asked for a tilt after that study from Johns Hopkins made the FRONT page of the CFIDS Chronicle and he refused. after that I went doctor hunting via letter writing.

Also, I have described my brain fog (an issue since I applied for disabibity way back when) as feeling like I just woke up from General anesthesia.

My sleep doc used to say that is because my perpetual alpha-delta sleep disorder perpetaully deprives me of sleep.

All I know is this all has been a long journey,. When I quit my 9-5 job, I HONESTLY thought the nutrition, Norman Cousins laugh therapy and sleep and rest would fix me for a return to work in 6 months

Oh, well, you just have to adapt and change outlook and relize our jobs are not the essence of WHO or WHAT we are.

Though some people have a real problem with that ...and for men I suspect it's worse.

Just my two cents.

[janineerrn]

WOW.

One step foward........ I found a great doctor

!0 steps back........... work up for CFS

I am the kind of patient who wants to know everything and i research. I drive the medical community crazy with "why". I dont just accept what they say for Gospil. Heck , I drive myself nuts.

So now I am trying to figure out where do I fall in this. Am I the subset group of POTS pts with CFS? Is CFS causing my OI? Hmmmmmmmmmmmmmmmmm

UGGHHHHHHHH>>>>>>>>>>>>>>>>>>>>>>> Just when I thought the research was winding down to treatments I havent tried yet, I may get a new diagnosis. I am soooooooooooooooooo tired of diagnostics!!!

I really appreciate your knowlegde and experience. Thank you for sharing it!!!!

Peace

Janine

[Be Still]

I just thought of something. Unless the US changes the description (like Canada did), you lose your CFS dx once you get another dx. So, if you have NCS, POTS or EDS, you 'don't have' CFS. CFS is defined by unexplained fatigue without any other dx that could explain it. Depression, FMS, IBS, TMJ, Sj?gren's and others don't take it away, but the above would.

[Sophia3]

here you don't lose the dx especially since Dr. Grubb said POTS is like running in place and very tiring and exhausting..to some more than others...so we still have CFS with NO CURE.

Also, it's the limitations they go by in US for disability with Soc Sec. Different rules for LTD by private employers

[Guest sonotech]

I always felt like CFS was more like a SYMPTOM.

It always seems to be secondary to other disorders, yet sometimes when docs dont know the ACTUAL dx I think CFS is used, yet it seems that there always seems to be another dx made sometime down the road.

So I truly feel it is a "side affect" of many diseases and that they go "hand in hand".

LAURA

[Be Still]

"Chronic Fatigue" is a symptom.

"Chronic Fatigue Syndrome", is a separate, multi-system illness with a specific constellations of symptoms.

"In general, 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." http://www.cdc.gov/ncidod/diseases/cfs/

The Canadian definition for CFS includes autonomic dysfunction. http://www.cfids-cab.org/MESA/ccpc.html