Why Am I Not (And Others) Diagnosed As Chronic Fatigue Syndrome?

[Alaska]

I was on vacation this week and had some more time to thing about stuff. I was just wondering why I (and others on this forum) are not diagnosed as chronic fatigue syndrome. I sure seem to have the symptoms of it. Right now the Doc is going with neurally mediated hypotension. I guess I'm wondering if having the diagnosis of CFS would make any difference to treatment. Also, is CFS really even accepted by doctors now? Doesn't seem like it is. I have seen studies where a large percentage of people with CFS have positive tilt table tests.

[peregrine]

As far as I can tell, one of the big reasons is that (at least according to the CDC's diagnostic criteria for CFS) the fatigue has to be "not a result of other medical conditions." Since many types of dysautonomia cause fatigue (which makes sense, even if you ignore the fact that most of us have fatigue), I would assume that this excludes most of us from the diagnosis of CFS unless the CFS was diagnosed before the dysautonomia showed up, or if the dysautonomia causes no fatigue whatsoever.

You could totally argue that CFS/dysautonomia are wildly overlapping anyways, although they're not 100% overlapping (example: I have dysautonomia but not CFS; my sister has CFS but definitely does not have dysautonomia).

[jangle]

It is true that a lot of CFS patients have POTS, however not all of them do so we can't say it is a purely spectrum phenomenon.

The recent study to come out showing that rituximab helped roughly 2/3 of CFS patients highly suggests some unknown autoantibody involved in that disease. I imagine there is some unknown antibody associated with POTS as well. One antibody - the ACHR autoantibodies have already been associated with POTS.

Unfortunately we have largely cardiologists studying POTS and they tend not to be well versed with the immune system. Realistically some field has got to take up the challenge, and it's probably either going to be rheumatology or neurology.

[yogini]

CFS is more than just being tired all the time. You need other chronic symptoms, such as low grade fever. I think docs do take it seriously and it Is much more well known than POTS. I don't know much about CFS trmt, but it is alsO hard to treat.

[peregrine]

(I'm using the CDC's diagnostic criteria, since I'm not as familiar with CFS as I am with fibro, POTS, EDS, etc)

The CDC criteria ask for severe fatigue that causes a substantial limitation in activities. The other criteria they ask for are four or more of the following: impaired memory/concentration; post-exertional malaise; unrefreshing sleep; muscle pain; joint pain (multiple joints); headaches (new/worse); sore throat (frequent/recurring); tender lymph nodes. Many of these (brain fog, post-exertional malaise, sleep issues, pain, headaches) are pretty common in folks with dysautonomia, but sore throat and tender lymph nodes aren't something that is brought up here often. Like yogini said, many folks with CFS (though not all) have low grade fever - my sister did.

[Chaos]

If you google the 2011 International Consensus Statement on ME/CFS it's very informative. It has significantly different criteria than the CDC criteria and certainly seems like a lot of us would fit the criteria very well.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Here's one link. If you scroll down just a little way to table one it shows pretty clearly the various criteria for diagnosis that the international panel of CFS experts have put together.

Personally I've tried to avoid getting a CFS diagnosis because in the states anyway, I've seen the way docs treat patients who have that particular diagnosis. If the studies (like Jangle pointed out) continue to show promise in treating CFS, then I might pursue getting that label but for now I'd rather have a label where at least docs don't know what I'm talking about rather than one where they make negative assumptions before they even meet me. Sad but true...at least in my community.

[issie]

I agree with Chaos - my sis has been to so many doctors with the CFS label and they don't look any further at her. At least with POTS and something rare and "unknown" they try to figure out the complexities of it all.

That being said:

There's another forum that I enjoy reading and have learned a lot from and it has to do with CFS. There are a whole lot of people on there with POTS. Most of the time, what they talk about is over my head. But, I enjoy reading it and get some pretty good info from it, at times. There seems to be a close tie in with POTS and CFS and some are trying to connect the two.

I don't talk about the swollen glands that I have in my neck - because other issues are much more bothersome. But, I do have that. Also my sister has CFS and OI issues. She does not have POTS. But, it's funny that we both have many CFS symptoms (but, I don't get the debilitating fatigue - like my sis does) and we both have autonomic issues - although different. In our case - there are other family members that appear to have or had dysautonomia issues - so there has to be a genetic component with us. There are also autoimmune issues on both sides of my family and that is starting to show itself with me also. With us, I think we can tie it back to a vaccine that caused us to have a long, undiagnosed illness that caused us to miss over 3 months of school when we were very young -pre-teen. Whether that triggered it in us or caused us to get - whatever - is yet to be determined - if it ever will be.

Good question and there very well could be part of this with some.

Issie

[Batik]

Speaking as someone who's been diagnosed with ME (also called CFS - the politics of that one are long and complicated), it's really not a good diagnosis to have. A lot of the time, as soon as you mention that you have ME, the doctor shuts down and refuses to look any further. From that point on, anything at all you report, including thunderingly obvious gallstone attacks, gets waved away as "it must be your ME". This is why I still don't know whether I have POTS or masto, and am having a nightmare time of it trying to get investigated for them. ME is better recognised than POTS, but as far as I can tell, POTS doesn't have all the nasty political stuff attached to it, and you do get taken seriously and offered actual treatment which is helpful. Patients with ME are generally offered either nothing at all, or two therapies which have been repeatedly shown to be useless at best and actually harmful in a huge proportion of patients (CBT and graded exercise). So if you think you have CFS or ME, you will want to weigh up carefully whether it's worth trying to get diagnosed with it. There's a good chance that it would simply make your medical care worse. It may be worth knowing if you are dithering over whether to have children, since there seems a high chance that it's inheritable, plus it affects your lifespan considerably (knocks off 25 years according to the one study I'm aware of in this area). But then diagnosis is very tricky and you end up getting misdiagnosis, running both ways, all over the place.

[Dizzysillyak]

I was diagnosed with me/cfs back in 1992 (became ill in 1990) but didn't realize I had pots until last year when I did

my own ttt at home. I knew I had oh (orthostatic hypotension) because several of my docs had performed the poor man's ttt test on me but no one had explained that my hr might be jumping

30 + points after 10 minutes. Knowing this helped me understand why I feel like crap after I've been upright for awhile.

Being diagnosed with cfs interferred with me knowing other diagnosises I had too. I have hyperinsulinemia, hashimoto's, celiac, food intolerances, myoclonus (not just during rem), gluten ataxia (gone since 2006), hypoperfusion, etc but these were never looked for by my doctors because I'd been diagnosed with cfs.

I don't know why but there's a laziness and poor attitude doctors adopt if the patient has cfs. My life is much better

now that I understand and am dealing with these other diagnosises the best I can.

This ignorance / laziness in the medical field is one of the reasons that I post on the web. I want others with cfs or other diagnosises of combined

symptoms to take a look at each symotom and try to get to it's root cause. This is what integrative /

functional doctors do. My current doc is the first doc in almost 20 years to look for root causes. What a waste ...

Tc .. D

[futurehope]

@Jangle,

I had no idea that positive Achr antibodies were associated with POTS. Mine have been elevated for years, but my neurologist and the testing they did on me do not show evidence of Mysathenia Gravis. I am wondering why my neurologist never told me they are associated with POTS? Is this a recent finding?

[Dizzysillyak]

If you have antibodies towards one thing, aren't you likely going to get antibodies to others ?

If so what's the purpose of researching certain antibody links to any illness ? Don't our bodies develop

antibodies from having a leaky gut which allows foods, etc to enter our blood streams that shouldn't ?

I know I have celiac disease, egg white antibodies and hashimoto's. That's as far as my testing

has gotten too. Tc .. D

[targs66]

I completely agree with the other posts about being dismissed the minute you mention CFS or ME. I've never been formally "diagnosed"; I just have had debilitating fatigue for as long as I can remember. No one could ever find out what was wrong with me, and b/c I was pretty functional back then, my fatigue was dismissed as "all law students are tired" or, later, "with a job like yours of course you're tired." But I was soooo much worse than my peers who were living the same demanding life that I was that I knew something was going on. I finally started seeing a chronic fatigue specialist myself to try to get to the bottom of my problems.

Many years later, and now in England, it's the same thing with ME opposed to CFS. I tentatively told my GP that "I've been told I have chronic fatigue", and it seems to have relieved him from any obligation to do anything for me. My ongoing and worsening dizziness/vertigo was dismissed as migraines(!) by what was supposed to be a topnotch neurologist, despite the facts that I almost never get headaches and that the wooziness is continual (as opposed to the waxing and waning of symptoms that migraine sufferers have). So now, as someone labelled with ME and migraines, there's basically no reason to go to my GP - he's done with me.

Sorry - this has turned into a bit of a rant!!! I guess I'm just trying to point out the pitfalls of the CFS/ME diagnosis: in my experience, it's led to being dismissed by doctors rather than leading to different treatment options.

[jangle]

@Jangle,

I had no idea that positive Achr antibodies were associated with POTS. Mine have been elevated for years, but my neurologist and the testing they did on me do not show evidence of Mysathenia Gravis. I am wondering why my neurologist never told me they are associated with POTS? Is this a recent finding?

It's about 4-5 years old.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671239/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2637993/

[issie]

If you have antibodies towards one thing, aren't you likely going to get antibodies to others ?

If so what's the purpose of researching certain antibody links to any illness ? Don't our bodies develop

antibodies from having a leaky gut which allows foods, etc to enter our blood streams that shouldn't ?

I know I have celiac disease, egg white antibodies and hashimoto's. That's as far as my testing

has gotten too. Tc .. D

Usually, if you have autoantibodies indicating certain illnesses there is an autoimmune component to your problems. Celiac and Hashimotos are both autoimmune things. Your body is attacking itself - what triggers it - may or may not be food related. My bet would be on cytokines and inflammation.

Issie