Cfs And Pots Overlap:

[firewatcher]

I know there is a tremendous amount of overlap in symptoms and presentation with CFS and POTS, with CFS characterized with unremitting fatigue and POTS with HR increases on standing. In the middle, almost all the symptoms are the same.

When and how do they determine that you have both? CFS can have orthostatic intolerance and POTS can have horrible fatigue.

There is also speculation that they are both really just the same disorder manifesting in a different way.

At what point along the spectrum between the two do they say you have BOTH?

[kayjay]

Firewatcher, My dr. does not believe that CFS exists. He believes that CFS sufferers have a reason for the CF and won't give it as a diagnosis because there is a cause for the CF. I don't know if I expained that well.

He thinks science just hasn't caught up and labeling someone with CFS is almost a "cop out"- he keeps looking for the underlying cause of my CF and trying to treat it. DOes this make sense?

I know I have POTS, I have what he calls "text-book Fibromyalgia". But he won't give me a CFS diagnosis although he is looking for and trying to treat my horrific fatigue.

In my case my mom reminded me that when your body is under stress- you need sleep. Also when you are trying to heal you need sleep.

I have to nap at least 2 times a day and I sleep about 12 hrs a night. Anyway I know his point of view may be offensive but I like that he is looking for solutions for me- In my case the other 2 problems can cause fatigue.

[dsdmom]

I think we have to remember that both POTS and CFS are syndromes - just names for a collection of symptoms. Technically they could be the exact same thing just labeled differently by different doctors. Fibro is also just a set of symptoms, not a disease. Without a known etiology you can label it 'purple syndrome' and it wouldn't matter. Without an underlying disease it's just symptoms...

Now that said, there are some people who have dys for genetic reasons and would not fall into the same category.

[juliegee]

I know there is a tremendous amount of overlap in symptoms and presentation with CFS and POTS, with CFS characterized with unremitting fatigue and POTS with HR increases on standing. In the middle, almost all the symptoms are the same.

When and how do they determine that you have both? CFS can have orthostatic intolerance and POTS can have horrible fatigue.

There is also speculation that they are both really just the same disorder manifesting in a different way.

At what point along the spectrum between the two do they say you have BOTH?

Hi Jennifer,

I think you may be missing something. Yes, CFS patients have unremitting fatigue. Yes, POTS patients have a high HR upon standing. And, yes, both CFS and POTS patients share many of the same symptoms. But, were you aware that 90% of CFS patients also have an autonomic dysfunction- abnormal tilt? Actually POTS is not the one most often seen. NMH and NCS are seen more often in CFS. But many patients have both POTS and NMH/NCS. This is big and makes total sense. IF standing upright stresses the body due to high HR and/or plummeting BP- OF COURSE you'll be more fatigued than folks who don't experience this stress.

Dsdmom is right. All of these disorders are simply syndromes- a collection of symptoms that are not always present or demonstrable. And, we have no known definitive cause for any of them. But, I think it's a huge eye opener to realize that most (90%) patients DXed with the collection of symptoms called CFS also have an autonomic dysfunction.

Julie

[erik]

It's an interesting topic! I don't have any especially clear info on it, but I've developed some tenative opinions/observations from other people's experiences!

It seems like having two or three of those is quite possible depending on the variety of docs you see over the years and each of their biases & experiences & knowledge. It seems that docs also tend to reach a "judgement call" diagnosis more often when they expect to be able to treat at least a few symptoms. Those that don't expect to be able to help you seem more reluctant to make the diagnosis/finding of these syndromes... since it's like diving in to murky water for them... or they even kind of drive you away (perhaps in rude manner).

I understand the blurry nature of "syndromes" but I try to see it as a blessing. It allows medicine to make preliminary attempts at contexualizing, theorizing, communicating about, researching, and even treating these things well before they are fully understood. Even though it's problematic, if this weren't attempted we would just be medically out in the cold. There aren't really too many "paramount advances" to refer to, but stuff that helps symptomatically in one area tends to get tested out quickly, and sometimes helps in another.

CFS is perhaps the most squishy of the 3, but does demand pretty significant persistent fatigue (or distinct unusual "delayed fatigue not aided by rest" pattern). ME (Myalgic Encephalomylitis), it's successor or cousin or whatever, has some more distinct definitions but is still incredibly complex so as to be blurry like CFS. The other two may or may not include that degree of fatigue. POTS has a trademark medical sign (an objectively measureable trait) in addition to the symptom cluster (though on rare occasion I guess docs will stretch across that). Fibro has semi distinct pain and "tender point" trait that sort of gives it a clear cutoff point... separate from a "sore fatigued muscle" feeling there should be more of a distinct pain and/or tender point element I guess (I'm not an expert in it).

The hugest overlap I seem to recall is of those with CFS also qualifying for POTS or Orothatstic Intolerance. I think that percentage is huge. I've read some reports that have CFS subcategory called "CFS-P", the P for POTS.

[firewatcher]

Soooo,

Under the broader terms of dysautonomia, CFS, POTS and fibromyalgia are all autonomic issues with symptom overlap?

In Ultra-simplistic terms:

If the fatigue is relieved by rest, even for a limited time, you would NOT qualify for CFS.

If you don't have painful joints and tender spots, you would NOT qualify for Fibro.

If you do NOT have a sustained HR increase of 30 bpm or more on standing, you would not qualify for POTS.

All have an underlying disorder like mitral valve prolapse, as yet undiscovered viral mutation, chronic Epstein-Barr, etc. whether you've actually found it yet or not.(?)

All may or may not have the same underlying cause, but present differently depending on how the body responds to that cause.(?)

If we all have this new/old retrovirus (if it is a virus, it's been around since before 1900) then how our bodies respond that dictates which constellation of symptoms annoys us the most and thus gets diagnosed.(?) Perhaps every person has had exposure to this virus and it is "triggered" to mutate by a bodily stressful event like Mono, growth spurts, pregnancy or another virus, which allows the latent DNA to finally mutate and reproduce.(?)

Just a random thought: what if this retrovirus is the same pandemic flu virus that caused so many deaths in Europe and America in the late 1800's---it fits geographically and population-wise as well as the initial timing of "soldiers' heart."(?)...the left-over genetic flaw created by our ancestors surviving that flu outbreak and passing the gene code down to us.

[kayjay]

Firewatcher- To confuse the issue further, I have all three (although my doc does not give CFS as a diagnosis- he views it as a symptom- I surely fit the profile )- and I believe in my case it is an auto immune problem. When I first got sick Hopkins thought that I had lupus based on my ANA.

When they "spun out" the cells it was not lupus but "a very unusual speckled pattern". My dysautonomia "crept" up on me when I was pregnant.

It is possible that I had a virus that I didn't know about but it would be a little strange that no one around me - esp. my husband -has ever had any of the problems I have had.

Maybe a virus caused an auto-immune reaction?

I have always thought that my problems started when I had a reaction to toxic black mold when I was pregnant.

Allergies are an immune system problem. I wonder how many of us have allergies?

Funny how it would help to have a better understanding. I was so relived to have a diagnosis- and I think we all want more answers even if we don't get better. P.S. If you sleep all the time like I do.... I would say you have both . Kari

[firewatcher]

Firewatcher- To confuse the issue further, I have all three (although my doc does not give CFS as a diagnosis- he views it as a symptom- I surely fit the profile )- and I believe in my case it is an auto immune problem. When I first got sick Hopkins thought that I had lupus based on my ANA.

When they "spun out" the cells it was not lupus but "a very unusual speckled pattern". My dysautonomia "crept" up on me when I was pregnant.

It is possible that I had a virus that I didn't know about but it would be a little strange that no one around me - esp. my husband -has ever had any of the problems I have had.

Maybe a virus caused an auto-immune reaction?

I have always thought that my problems started when I had a reaction to toxic black mold when I was pregnant.

Allergies are an immune system problem. I wonder how many of us have allergies?

Funny how it would help to have a better understanding. I was so relived to have a diagnosis- and I think we all want more answers even if we don't get better. P.S. If you sleep all the time like I do.... I would say you have both . Kari

Well, I don't sleep all the time and my fatigue will get better if I sleep on my body's natural circadian cycle...so I must not have CFS. (I also don't run a low-grade fever or have swollen lymph nodes)

I also don't have Fibromyalgia, my Mother-in-law has that and my symptoms and hers are not at all similar. (no aching, tender points)

I don't have Mitral Valve prolapse either.

I guess it is POTS and being in the wrong time zone.

I'm just wondering at the overlap and where one starts and the other ends as far as diagnosis is concerned.

[iheartcats]

I have aches and pains that are random (not all Fibro points, but I'm not imagining the pain, I promise!).

Also - my fatigue can be daunting. Some days it's more tolerable than others. Now? I'm forcing myself to stay up because I have things to get done. It's not easy.

I'm still confused how you can have symptoms of CFS/POTS/Fibro - which I think many of us do - but are diagnosed with 'just' POTS (or insert other thing here).

So what is all this, anyway? I'm working with a Rheumatologist to see if I do have CFS.

But I'm still confused.

[chipper]

Dr.Grubb's book explains the difference. " The Fainting Phenomenon"

Hope this can help!

[ramakentesh]

Im going to say what Ive believed for a long time. the fundamental problems with CFS are the result of orthostatic intolerance of some degree. Ive met SOOO many CFS patients. Ask them questions like 'how are you standing still in a busy line a the supermarket' and they all report exactly the same symptoms as I experience.

Go and speak to any CFS patient, ignore any preconceptions and then compare your symptom list. They will be identical. I have POTS, I get sore throats and swollen glands for no reason - **** I get a whole list of symptoms that arent listed under POTS.

Actually POTS is not the one most often seen. NMH and NCS are seen more often in CFS. But many patients have both POTS and NMH/NCS.

According to Rowe, however both Bell and Stewart et al stated that the most common autonomic 'phenotype' found in CFS patients was POTS. Either way the end result is the same.

But my most important point here is this - I consider myself to be reasonably intelligent yet for 1 whole year I DID NOT CONNECT MY SYMPTOMS TO STANDING. I know it sounds crazy, but I could never work out why at certain times I felt overstimulated, dizzy and out of it. Often I used to get it from constant sitting rather than standing so I just didnt get it. I was diagnosed with CFS and it wasnt until I found POTS on the net that I worked out it was connected to standing! Sounds crazy, sounds closeminded but its true.

its hard to realise something is causing something when you feel terrible and cant think straight. My belief is that in the majority of cases the connection is never made and the person is told they have CFS, they read the symptom list (where orthostatic intolerance symptoms predominate) and they accept it.

Iknow a girl that has a condition that I would SWEAR is POTS, yet she is convinced its just 'ME' because he doctor told her so. Frustrating. he wouldnt let her get a tilt table despite the fact she has the tachycardia, the dizziness and the body tremors.

Then ofcourse there are schools of thought where CFS, POTS, FIBRO and NMH are all the same condition. My current doctor talks of POTS and CFS as if they are the same entity. He said that ALL His patients have orthostatic intolerance of some form and he has over 200 'CFS' patients.

Another study also found high levels of NE in CFS patients and impaired NE reuptake - the same phenonema that is often cited in hyperadrenergic POTS.

Dr Bell even broke up CFS into 'sleepy' and 'adrenaline' varieties - like partial dysautonomia and hyperadrenergic POTS.

Same conditions, different paradigm.

[juliegee]

But my most important point here is this - I consider myself to be reasonably intelligent yet for 1 whole year I DID NOT CONNECT MY SYMPTOMS TO STANDING. I know it sounds crazy, but I could never work out why at certain times I felt overstimulated, dizzy and out of it. Often I used to get it from constant sitting rather than standing so I just didnt get it. I was diagnosed with CFS and it wasnt until I found POTS on the net that I worked out it was connected to standing! Sounds crazy, sounds closeminded but its true.

AMEN!!! My experience exactly. It wasn't until my son missed almost an entire year of school ( couldn't eat, stand, etc.) and was DXed with NMH/CFS, that I decided to try a poor man's tilt test myself. I was SHOCKED to see that my HR rose 60 bpm within 10mins. I was also shocked by how lightheaded & nauseous I was- just by tanding. I knew I had lots of weird health issues, and had to push to do what my peers did easily. I just never knew why I don't think this is crazy, Rama, unfortunately, I think it is the experience of many unDXed sufferers.

I also agree that the overlap between OI, CFS, FM is undeniable. Same horse- different name.

[kayjay]

I also agree that the overlap between OI, CFS, FM is undeniable. Same horse- different name.

Totally agree but for many of us could we add IBS or slow gut, migranes, and allergies/ drug sensitivities?

So many of us seem to have these problems as well.

[juliegee]

Totally agree but for many of us could we add IBS or slow gut, migranes, and allergies/ drug sensitivities?

So many of us seem to have these problems as well.

I agree, Kayjay. I have shared this before, but I will do so one more time... (Forgive my redundancy!) When we first met Dr. Peter Rowe at Hopkins, a ped who runs the CFS clinic, he shared a chart that visually demonstrates CFS.

The chart is comprised of a BIG circle in the center labelled Orthostatic Intolerance. There are spokes (with arrows in both directions) going completely around the main circle (except at the very bottom)- like a drawing of the sun. Off of each of these spokes is a component of CFS: Depression, Anxiety, Food Allergies, Inhalant Allergies, Asthma, Infection, Movement Restrictions, Chiari type I or C-Spine stenosis, EDS, Pelvic Venous Incompetence. At the bottom of the chart, directly beneath the main circle, is a long oblong, labelled CFS. This is connected to the main circle by a spoke with directional arrows pointing both ways.

IBS, slow motility isn't directly addressed by this chart- which may have old info by now. (It was given to me several years ago.) BUT, Mack was referred to DR Rowe within Hopkins by a GI motility doc for slow motility- as were MANY other of Dr. Rowe's young patients. He made a big point of saying "And this chart doesn't even address Mack's additional GI symptoms."

I just realized that migraine isn't specifically addressed either...however, the component of "Movement Restrictions" infers pain throughout the whole body. My son used to suffer from extreme movement restrictions. He experienced extreme pain not only in his head, but all over his body.

As a side note, Dr. Rowe doesn't believe that CFS patients are generally depressed or anxious. He always stressed to us that these were" side effects" of the physiological changes happening within the body.

Most importantly, Dr. Rowe said that in order to have a DX of CFS, one must suffer from OI (in the center) and also suffer with two or more of the other components. This definition is a little different from other criteria that other doctors use. Keep in mind that Dr. Rowe is primarily a researcher- he just manages a core group of patients.

[mountain girl]

I found this all to be interesting because I have the pots dx and fibromyalgia dx a few years before the pots developed. I wonder about the chronic fatique but both pots and fibro can cause fatique. I sometimes feel well rested after sleep and some times do not. If I do too much activity like work several days in a row or travel I feel what I call hung over the next day from being so tired. Wonder if they are all treated the same? My dr. did seem to know about the connections but did not go into detail, although it was my first visit with him.

[tlserenity]

I know this topic is old - But i found it very interesting - considering I was diagnosed for 17 years ago with Fibromyalgia and CFS until all of a sudden my Chiari I Malformation got (in my words) angry enough to be seen and then all of a sudden the fibro and CFS labels no longer fit and the Fibro doctor wouldn't even see me. While I am quite certain that Fibro DOES exist - i am also quite certain that i don't have it and that i never did.

In the past year I have undergone three surgeries for Chiari and related problems - and after these - have been diagnosed with POT's secondary to to Chiari. and my doctor says I have had POT's all along - right with my Chiari - which I was born with.

So yes - I am positive there is an overlap - with Chiari, Retroflexed odontoid and POT's

After years of the frustration of doctors trying their hardest to fit my strange symptoms into fibro and CFS - NOW it is a releif to know it has always been Chiari and it's related illnesses and POT's.

thanks for all the info posted here!!!

Terry Lynne

[lauralulu]

Iknow a girl that has a condition that I would SWEAR is POTS, yet she is convinced its just 'ME' because he doctor told her so. Frustrating.

That was me for 8 years. Til a FRIEND told me about POTS based on my strange urinary symptoms and at first I, like you, couldn't connect any problems I've felt to standing. Which is ironic because when I look back on a blog I kept, at a time when my symptoms were bad I wrote "I have had to adapt playing games with the children [i was doing voluntary work in a school] to allow me to sit down because I'm so tired all the time but if I sit down I can have a rest yet still engage them in some game without having to run or move about with them!"

I only recently decided to get a HR watch and see if 'there could be anything in' what she was saying and then I saw with my own eyes HR increases of 30 and 40bpm from laying to standing.

And then so many things made sense- including feeling so tired and having to 'rest' so much more than anyone else I've ever known.

[icesktr189]

this is a far strech here but i thought i would put it out just in case. My mom had colitis about ten years ago, had her colon removed, and now just diagnosed with crohns. she has been to mayo for this with little help. she started searching for a med that would not lower her immune system (she took one and came down with valley fever). she found this med, i forget the name, but basically its given to alcoholics at 50 mg to help get them off. but tons of studys have shown at taking it at 4.5 mg people with AIDS, crohns, colitis, and many other illnesses have gone into COMPLETE recovery. it is not FDA approved at this small of a dose because no one will put out the funding for it. also many pharmaceutical companies dont want it known because it would get rid of the need of many medications. her doctor at mayo has given her a prescription for 50 mg which is added to water, and she is going to start at 2.5. i started to really wonder if this would help with our condition. there are NO side effects, except for more vivid dreams the first week.

im sorry i forgot the name but i will update with it.

[scarfgirl]

Just to throw in my two cents - I had a doctor explain that in order to be dx with CFS, all other causes and syndromes had to excluded. One of the dx criteria is unremitting fatigue with no know reason behind it. So if you have POTS, you can't have CFS. CFS is what you get labeled with when everything else-including all other 'syndromes'- has been ruled out. It basically means you're sick, and no one knows why.

I like that explanation, and think it makes sense, but know a lot of ppl don't agree with it.

[erik]

...she found this med, i forget the name, but basically its given to alcoholics at 50 mg to help get them off. but tons of studys have shown at taking it at 4.5 mg people with AIDS, crohns, colitis, and many other illnesses have gone into COMPLETE recovery.

Very likely this is Low Dose Naltrexone (LDN). Definitely a fascinating topic.

[futurehope]

Dani,

You are probably referring to low-dose naltrexone.

[icesktr189]

yeah my mom is starting it in a couple days so ill let you guys know how it goes!

[Lenna]

Hi,

I'm going to post this under it's own heading with a lot more detail when I get a chance, but since it's popped up on this thread, I'll respond quickly here as well. My son just did a 2-week trial of LDN. He started at a dose of 1.5 mg. with the intent of working slowly up to 3 mg. However, he felt SO sick the entire 2 weeks that he was on it, he decided to stop taking it. I then called Skip Lenz who is an expert on LDN to discuss whether he thought that Dan's terrible 2 weeks might have happened because of LDN or IN SPITE of LDN. Of course he couldn't be sure, but he said either way, he did not feel that POTS is a condition that would respond to LDN.

If anyone else is taking LDN and has better results, PLEASE let us know. I was so hopeful, and am so disappointed that it didn't help Danny.

[sugartwin]

I would say POTS is simply a symptom. A super-symptom, but a symptom nonetheless.

I think CFS causes POTS, I don't think CFS -is- POTS. Because if it is, I was born with CFS. I've had POTS symptoms since I could remember... as a young girl...worsening as young adult and getting steadily worse as an adult.

I don't have fevers, sore throats or swollen glands...signs of infection. I have Ehlers-Danlos Syndrome, which I was born with.

POTS to me is like the nephrotic syndrome (although more sophisticated than this). It is a syndrome that has a cause. The causes are diverse: autoimmune disease (like diabetes) can cause POTS, a genetic syndrome like EDS can cause POTS. I believe that whatever causes CFS (XMRV or some other infectious agent) is causing POTS.

But a diabetic and someone with EDS and someone with CFS are not suffering the same condition, though they may all have POTS.

These syndromes of the disrupted autonomic nervous system (fibro, CFS, IBS, POTS) are poorly understood. I think that conflating them is a mistake, however, because they need different treatment depending what's causing them.

[Dizzysillyak]

I was diagnosed with CFS/FM with orthostatic intolerance / dysautonomia via the poor man's tilt table test. So yes, the symptoms overlap ...

Keep in mind how these diagnosises are established ... I was diagnosed with CFS because when I was asked what my worst symptom was I said fatigue. Granted, I've been disabled / very sick since 1990 and didn't even know what dysautonomia was until a couple of years ago. (Thank you google !) I just thought my body was too weak / fatigued for me to stand up. And I thought my ataxia was from my legs being too tired to walk. And I thought IBS was real ... lol ... Geesh, it just hit me, I wonder if my doctor was thinking this too ...

What we need to understand here is that our bodies create symptoms as a way of telling us something is wrong. Period ... Traditional doctors don't look for the cause of our symptoms and therefore, will only give our symptoms a label. Or in our cases, one label for a GROUP of symptoms. Whereas, functional medicine looks for a cause as in nutritional deficiencies, food intolerances, candida, toxic poisoning, etc etc ...

Functional medical professionals also believe that our bodies can heal themselves given the right environment whereas traditional doctors don't understand this ... Medical care is improving though since we have a new type of doctor called an integrative doctor who understands both.

IMHO, Giving someone a diagnosis based on a symptom, worse yet a group of symptoms, without thoroughly looking for a cause seems ridiculous when you think about it, but here we are.

What we need to be looking for here is common causes not common symptoms ... Who here is gluten, casein, soy, egg, etc intolerant ? Who has candida ? Who can't handle being around cleaning chemicals or perfumes ? Who has leaky gut ? Who has nutritional deficiencies and which ones ?

The problem with message boards like this, is that we all found this board by googling our diagnosis, right ? Our doctors diagnosed us with this illness without looking for causes and then we went about finding others with the same diagnosis so we could all "understand" our illness / diagnosis. And since all of our traditional doctors have told us that there is nothing we can do and this is the acceptable treatment for CFS and POTS, as a group, we believe that there is nothing we can do about our illnesses. SAD, isn't it ?

Sorry to get off track ... I just get upset when I think about how so many of us are struggling with either CFS or POTS or some other chronic illness and it's because our doctors aren't looking for the cause ...