Pysch Says Heavy Fatigue Not Pots - True?

[Suzanne]

I am seeing a pyschologist for my depression and anxiety and she is telling me that my levels of fatigue are not caused by POTS. She says she has read up on it and it just doesn't cause someone to have fatigue for days and days. I accept that I have work to do regarding my anxiety, which results in me struggling to drive when I am really tired and dizzy. She says this is not POTS. She is saying that it is psychosematic (can't spell it). Does anyone have any views on this? Your thoughts would be appreciated as I am feeling quite upset about it.

Thanks!

[shayden]

Hi Suzanne,

I am afraid she may not understand POTS and the effects that POTS has on our bodies. Ask the psychologist where she learned this information and then offer her informative brochures regarding POTS that prove otherwise. The last thing we want to happen is for this psychologist to go on believing this oh so wrong information so that hopefully...if they are approached by a POTS patient in the future....they may have a different attitude/outlook.

I am sorry this happened to you. Good Luck.

Susan

[futurehope]

Suzanne,

Fatigue and orthostatic intolerance are my two biggest symptoms. I'm functioning at 20% of what I used to because of fatigue. I cannot work.

I just found out that I have less blood circulating in my body than is average for my weight/height and less red blood cells as well. Combine that with blood that pools upon upright posture, and that is a recipe for fatigue.

The test that was done to find that out is NOT one of the usual blood tests like a CBC, or a hematocrit.

That is not to say that one cannot suffer with depression and or anxiety.

Who wouldn't be anxious trying to drive a car while dizzy and lightheaded?

Maybe you could show the psychologist one of the brochures that this website produced. I've often given them to people or doctors who need to know. The brochures are great!

It really upsets me to hear someone tell you something about this ailment when they OBVIOUSLY know nothing. And don't get me started about that psychosomatic stuff!!! That really gets me hot. Yeah, we all decided that life was SO great, that we had to mess it up by getting fatigued, and feeling poorly. Yeah! Yeah! Yeah! Blah! Blah! Blah!

This psychologist sounds like she thinks she understands. Well, believe me. She doesn't.

[lthomas521]

Yes POTS can give you debilitating fatigue for days and days and days. What has your psychologist been smoking? I know what she hasn't been reading. There was a recent article in the Mayo Clinic Proceedings that said that POTS was as disabling as chronic obstructive pulmonary disease or congestive heart failure. http://www.ncbi.nlm.nih.gov/entrez/query.f...2&dopt=Abstract

I have POTS that has been severely physically debilitating, but I have never had any anxiety complaints. I once was given a prescription for some anxiety medication to use in case some other medication we were trying were to make my all jumpy. I filled the prescription for the tranquilizer but never opened the bottle. Never even thought about it. Never felt I needed it. When I told a friend of mine that some doctors thought I had "histrionic personality disorder" because I was seeking medical attention (they thought I was just seeking attention), she said, "That's ridiculous. You are the most emotionally stable person I know."

I don't know what kind of "work" you can do on anxiety if you have anxiety because of a norepinephrine problem. If you are all jittery about driving while you have insufficient circulation in your brain, that is a sign of sanity. Is there any way that you can reduce or eliminate your driving? Are you employed? Do you have to drive to get to work? Ask your human resources department if there is someone you can car pool with. Don't tell them about the POTS unless you want to. You just want to fight greenhouse warming. If you just have to drive to do errands, maybe you can work out some sort of deal with a friend or neighbor, e.g., you watch the neighbor's kids after school and the neighbor takes you to the store. Be creative.

The main "work" you have to do probably involves boosting your blood volume, or correcting whatever else it is that is causing your POTS.

My guess--and it is just a guess--is that POTS really is due to a lack of norepinephrine transporter, and that some people have this problem primarily in the central nervous system (and have panic disorder or other anxiety problems but no POTS), and other people only have it mainly in the peripheral nervous system (and have POTS but no anxiety), and still others have it in both places (and have POTS and anxiety). We know that some people whose NET gene is switched off have panic disorder, some have POTS, and some have both.

Fair warning: there are lots of psychologists who like to pretend that problems that are obviously the result of a diagnosable physical problem are actually psychosomatic. I guess that subconsciously they think that they won't get paid unless they can convince you that your problems are psychological. Ironically, they could provide valuable service if they would simply read up on our physical problem and help us deal with the impact it has on our lives. But that would take intelligence and compassion, and some education. I won't waste my time and money on any professional that doesn't already know more than I do about my problem.

[Guest tearose]

Dear Suzanne, my goodness, what DID she read?

Fatigue.."profound fatigue" was (and can still be) a daily, debilitating symptom for a looong time!!! And I was NOT depressed when so fatigued either.

I am tough on people like your Psychologist because I refuse to let this syndrome take any more away from me or let people make assumptions about what I "should or should not" be experiencing!!! I tend to make it really clear that just because some medical professionals don't understand WHY we can be so wiped out...doesn't mean there is no reason. They just haven't come up with the technology to understand yet.

Suzanne, I was in a bad and serious relapse for nearly four years and I thought I was certainly in a slow and permanent decline. I had fatigue that made my life's daily window of activity about three- four hours long. (I couldn't maintain myself without naps and accommodations) I would manage to get myself together by 11am and then by two feel like I needed a nap and maybe, after a nap, I could get up and around to be with the family at dinner. I used paper goods, let the dust bunnies germinate and tried to learn more about life with a chronic illness...I am still learning but it is very important that we let those who are part of our medical team "get it" that the fatigue is real and valid and can exist for prolonged periods.

I hope your psychologist reads more and sees that in people like you and me...our energy level can get so low and it takes its toll on us just to walk, stand or go up a few steps.

take care, tearose

can't type well tonight, my eyes are heavy with tiredness...hope I was clear...best regards, t

[ellen]

Dear Suzanne,

May I suggest you direct your psychologist to the Dinet website, on the left-hand side, look under POTS Place, click on "Symptoms". Halfway down the list is "Fatigue (can be disabling)" .

[Sophia3]

No offense but a therapist that does NOT BELIEV THE FATIGUE aspects of POTS is USELESS to you and blaming the victim.

Has she read this from this site? How about the NASA OI Article where Dr. Robertson mentions the debilitating aspects??

Here is from DINET site

P.s. I don't think your problem is fatigue from depression. I think you need a NEW THERAPIST. No offense.

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POTS: An overview

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Standing up is something most of us take for granted; we've been doing it since childhood. Our bodies automatically adjust to the pull of gravity by increasing vascular tone, heart rate and cardiac output. Blood vessels contract, heart rates increase and our systolic blood pressure remains the same or decreases slightly while diastolic pressure increases slightly (Brunner & Suddarth, 2000, p. 546). Our bodies operate in perfect homeostasis and we stand up with little effort.

However, the simple act of standing up can be a challenge for some people. There are disorders that affect the body's ability to appropriately adjust to the pull of gravity. When the body cannot effectively adjust to upright posture a person is said to have orthostatic intolerance. Postural orthostatic tachycardia syndrome (POTS) is a disorder characterized by orthostatic intolerance.

Postural orthostatic tachycardia syndrome is defined by 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.

While the hallmark of this disorder is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. The ANS is also responsible for regulating a multitude of other organs and functions throughout the body. Some of these functions include temperature, pupil dilation and constriction, salivation and the digestive tract. A patient experiencing ANS dysregulation may experience abnormalities in the many organs and functions the ANS regulates.

POTS can be categorized as primary, meaning it is idiopathic and not associated with other diseases, or secondary, meaning it is associated with a known disease or disorder (Grubb, Kanjwal & Kosinski, 2006). Physicians believe there are distinct subtypes within both the primary and secondary forms, however the subtypes are still in the process of being identified, labeled and universally accepted.

People generally develop POTS after becoming sick with a virus, giving birth, or being exposed to great bodily stressors. Some people have had POTS their entire lives. Teenagers sometimes develop the disorder during the years of rapid growth, and 75-80% of them can look forward to being asymptomatic when they reach adulthood (Grubb, Kanjwal & Kosinski, 2006).

The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Most patients will have to make some lifestyle adjustments to cope with this disorder.

It was once estimated that nearly 500,000 Americans had POTS, which made standing up a challenge (Robertson, 1999). However, with research advances and growing physician education the number of people found to have POTS symptoms is steadily rising.

POTS patients tend to be between the ages of 15 and 50 (Grubb & McMann, 2001, p. 65). Women are 5 times more likely to develop POTS than men (Grubb & McMann, 2001, p. 65). POTS does run in some families. The onset can be sudden or gradual. The quantity and severity of symptoms varies from day to day.

There are treatments for POTS symptoms which can be tailored to each individual patient, especially if an underlying cause is discovered.

[MightyMouse]

I used to work for a psychology professor who also had POTS like symptoms--she actually had Cushings which was finally diagnosed (some may recall, she the one who took me to get diagnnosed)

...anyway, here's her professional description of the difference between fatigue and exhaustion from physical illness and the same from depression:

If you're depressed, you don't have a desire to get out of bed.

If you're physically ill, you actually want to get up but your body doesn't always comply with your wishes.

And then, to complicate things, those with long-term illness can have an overlap. Being hopeful, missing the things that are going on in your life while you're still in bed, and continuing to work on getting out of bed are signs that it's mostly physical health issues.

Not having hope, not having wishes for the things you could otherwise be doing instead of lying down point more toward depression.

Feel free to share my post with your psychologist if you think it might help you. She is incorrect that POTS doesn't cause days on end of being bedridden. That's a myth. People with POTS have the quality of life of a person with congestive heart failure--and they tend to have to live relatively sedentary lives because of their exhaustion.

Good luck, and if you can't reach a point of understanding with your psychologist after discussing this issue, then you might want a different one. Also, I tend to have a bias toward using a social worker (LSW) because they're often very goal oriented, which suits me. But, maybe that's because I work with so many psychologists who are just darned nutty!

Nina

[ariella]

Everyone here was very eloquent.

Just wanted to add that I would not force myself to drive a car when dizzy or fatigued. I was in a (thankfully) minor collision a few years ago directly due to POTS symptoms. Please use caution.

I think in general, and this is something I struggle with, that we sometimes buy into the "mind over matter" thing to the point where we endager ourselves. We believe that if only we were emotionally stronger blah blah blah we will be able to do anything and overcome all our physical limitations. Positive attitude is great only until the point that we can't accept our real limitations. IMO it takes more courage to accept what we cannot fix than going around bashing ourselves for not overcoming.

Ariella

[briarrose]

It looks like plenty of people responded to this all though I didn't take time to read them all.

You should recommend to your psychologist that she go back to medical school because she doesn't know what's she is talking about.

Fatigue is a huge problem with POTS. It is estimated that at least 1/3 of the CFS patients in this country actually have POTS not just a simple diagnosis of CF. Our symptoms, topped by usually chronic anemia and/or hypovolemia causes such incredible fatigue. A few years ago before I started taking Epogen injections I was so fatigued I could barely crawl to the bathroom. The constant tachycardia was also extremely exhausting. Then the medications that you put you on, some of them have fatiguing effects.

Anyway there is plenty of documentation that has been done about the fatigue of this illness so I hope you educated her and then fire her and find someone that knows how to be open minded, listen and learn!

[Miriam Poorman-Knox]

Have her call me!!!!!!! I have had months that I could not get out of bed. Miriam

[futurehope]

Dear Suzanne,

The thought occurred to me that you yourself may not be familiar with this syndrome and that is why you are questioning this psychologist's assessment of you.

Are you the one who decided that a psychologist was what you needed?

If so, I apologize for the negative language in regarding this doctor's opinions especially if you yourself are not familiar with POTS.

It would be in your own best interest to learn as much as possible to build up your own confidence regarding this syndrome so that when, indeed, you have to interact with someone, they will sense your confidence and your knowledge and they will not be as eager to question your symptoms.

Good luck, dear.

[Guest dionna]

i have been to a few physc docs and none of them say i have any problems with anxiety or depression- however i am always fatigued too. yes POTS can cause you to be fatigue. my advice: don't take it personal and like others mentioned... take the doctor proof. good luck to you and sweet dreams since that is what you are able to do. but i hope you get to feeling better and aren't as tired all the time.

dionna

[Guest Julia59]

POTS causes disabling fatigue. I often have to go out and run an errand to see how bad off I am. Sometimes just sitting around doing nothing I can't tell---then when I try to do something that requires a little effort is when I feel the fatigue.

I'm always still surprised to see how fatigued I get from just going to a small meat market or a short errand-----Maybe a 10 minute job. I always get so much worse when I go out of the house. I think I get easily over stimulated. I used to be able to drive 20 minutes across town and go to the mall for a while as long as I rested on and off. That's out of the question now. I still try to do things, but often get disappointed that I can't complete the job---or social outing.

Having company over is tough too. All of this is mostly related to the disabling fatigue I have.

Today I went to get my cardiac loop recorder down loaded, and I was running a bit late. I only had to drive two minutes to the appointment. But I had to walk a little faster---I tried this for the first 50 feet or so, and found I couldn't continue, and had to slow to a crawl pace. When they download the loop recorder I was sure my heart rate would be racing, but it was only 68---I felt like a wet noodle.

There are still alot of medical professionals as well as psychologists who are still very ignorant on the effects POTS can have on peoples lives----the physical effects...................

I sometimes have trouble believing it myself----but I have read enough to realize that most likely it's because the way society (medical and otherwise) views this disorder, and I start to doubt myself. This stuff screws with your head---period. WE simply don't need the medical profession screwing with our minds more.

This is when the anxiety/depression comes into play---after enough of the medical professionals screwing with our minds. Then of course we are told---"see we told you it was anxiety/depression".

Julie :0)

[Suzanne]

Thank you all so much for your encouragement! I am printing off some of the info to take tomorrow to my pysch. I agree that I don't know as much as I should about POTS, so when I am challenged about it, I am not able to argue convincingly. I get brain fog when I read up on it, but will take info to bed and read it, I am sure it will cure any sleep problems! I will be more informed from now on. I do have a real anxiety problem, but I also tend to get too submissive with doctors as I am not really sure how much is in my mind and how much is physical.

Thank you again, I feel much stronger already.