Advice please - seeing a psychiatrist on Friday

TiredSam

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Hi Everyone,

I live in Germany, have had CFS for 18 months but have no official diagnosis. I would like to go the the Charite University hospital in Berlin (9 hours away), where they know what CFS is and take it seriously, to get it diagnosed. Before I do, I have to get a number of things excluded by local doctors (sleep disorder etc). I've had most of the tests, the psychiatrist is on Friday, who hopefully will exclude a psychiatric cause for my fatigue.

I've read so much online (and heard many personal accounts from people at my local self-help group) about psychiatrists causing untold damage by giving a wrong diagnosis and treatment, that I'm really rather paranoid and nervous about my upcoming appointment.

Any advice in advance on how to survive an appointment with a psychiatrist without being invalidated and labelled something unhelpful and inappropriate would be gratefully received. Thanks!
 

Sidereal

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The answer to your question depends on whether you have psychiatric symptoms. Not entirely, since some of them will diagnose you with psych problems anyway even if you have "just" CFS and no comorbid anxiety, depression etc., but if you do, this will be readily apparent to them and treatment will be recommended.
 

TiredSam

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Thanks for your reply. My main symptoms are PEM and headaches. I get brain fog, but only when I overdo it physically. I'm still working, but have given up just about everything else to be able to keep doing my job, which I enjoy. I can sit, stand and walk slowly short distances, anything more than that brings on my symptoms. Luckily my work can be done sitting. No comorbidity, no past psych problems. I'm just worried that tiredness and headaches with no apparent physical cause will get me the wrong diagnosis from a psychiatrist. Male, 49 by the way.
 

Mary

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Hi Everyone,

I live in Germany, have had CFS for 18 months but have no official diagnosis. I would like to go the the Charite University hospital in Berlin (9 hours away), where they know what CFS is and take it seriously, to get it diagnosed. Before I do, I have to get a number of things excluded by local doctors (sleep disorder etc). I've had most of the tests, the psychiatrist is on Friday, who hopefully will exclude a psychiatric cause for my fatigue.

I've read so much online (and heard many personal accounts from people at my local self-help group) about psychiatrists causing untold damage by giving a wrong diagnosis and treatment, that I'm really rather paranoid and nervous about my upcoming appointment.

Any advice in advance on how to survive an appointment with a psychiatrist without being invalidated and labelled something unhelpful and inappropriate would be gratefully received. Thanks!
Why do you have to see a psychiatrist? Is this required by insurance or something? I don't think there is any need or place for a psychiatrist in the diagnosis and treatment of CFS and if you are not being forced to go somehow, I wouldn't. It's like telling someone who has cancer or a broken leg to see a shrink (IMHO).
 

mango

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i totally understand why you are feeling apprehensive... i have no advice, just want to wish you all the best :) let's hope it's a skilled, respectful and compassionate psychiatrist.

if you would like to bring some information about me/cfs "in their own language", there's an article in the October 2014 issue of American Psychological Association Monitor, on page 67-70. http://www.apamonitor-digital.org/apamonitor/201410/#pg75
 

ahmo

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You might want to watch the vid I'm linking. I don't know if it applies to you, but B12 deficiency, which many of us have, causes a range of neurological and *psychological* problems. Also linking one about brain histamines and neurological issues. There is more and more evidence of gut problems and gluten intolerance both causing a range of brain problems.
You should also take into account thyroid. Common thyroid tests can easily miss thyroid dysfunction. You might not be experiencing any of these symptoms, just seeing a shrink because it's part of the process you need to engage in...Welcome to pr and good luck.:thumbsup:

Diagnosing and Treating Vitamin B12 Deficiency‬
http://www.youtube.com/watch?feature=player_detailpage&v=QqjyAeOLyKM

'Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q
https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

5 Lies About Your Thyroid Disease That You’re Likely to Hear http://thyroid.about.com/od/thyroidbasicsthyroid101/a/5lies.htm

http://www.stopthethyroidmadness.com/
 

TiredSam

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Why do you have to see a psychiatrist? Is this required by insurance or something? I don't think there is any need or place for a psychiatrist in the diagnosis and treatment of CFS and if you are not being forced to go somehow, I wouldn't. It's like telling someone who has cancer or a broken leg to see a shrink (IMHO).
I quite agree mary. It is on a list of things I have to get excluded, required by the Charite before they will see me.
 

TiredSam

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These are all the things I'm having / already have had checked:

Other diseases associated with fatigue symptoms musthave beenexcludedbefore visiting our outpatient department.
This includes:
  • Internal diseases (CT scan / x-ray, CT scan abdomen, ECG / echo, labaratory: BB, liver, kidney, electrolytes, HbA1c, CRP, ferritin, CK, Proteinelektrophoresis
  • Chronic infections (hepatitis B / C, Lyme borreliosis, HIV)
  • Endocrine disease (thyroid, adrenal gland)
  • Gastrointestinal disease in case of abdominal pain
  • psychiatric disorder
  • Neurological disease (in case of nervous system symptoms: NMR cranial)
  • In case of arthralgia, fibromyalgia: rheumatologic disease
  • If suspected: Sleep Apnea
 
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Personally I think the worst is if they diagnose depression, anxiety, or that you are "too concerned" about your health. If the psychiatrist says you are, they might not give you any more testing and label you that way forever.

I have seen too many patients that got worse treatment after being labeled, and I have been there too.

I would try to hide any anxiety or nervous symptoms and depression. Fatigue alone can make someone look depressed so I would try to hide that too.
 

mango

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another piece of info you might want to read (or bring with you in your back pocket, just in case the topic would arise) is the chapter "Differences Between ME/CFS and Psychiatric Disorders" from the Canadian Consensus Primer: http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

ME/CFS is not synonymous with psychiatric disorder. Pay careful attention to the characteristics, dynamics of progression, and correlation of symptoms.

• Depression:
Reactions to exercise (see chart on page 4) are helpful in distinguishing ME/CFS from depression. ME/CFS patients have symptoms such as joint and muscle pain, severe headaches, recurrent sore throats and upper respiratory infections, tender lymph nodes, cardiopulmonary symptoms, COI, tachycardia, and a cluster of cognitive impairments, which are not commonly seen in depression. Some ME/CFS patients may suffer from reactive depression due to their pathophysiological impairments and reduced quality of life, but many objective indices can differentiate ME/CFS from primary depression.

• Somatoform Disorder:
There is some symptom overlap between somatoform disorders and ME/CFS. However, somatoform disorder patients often have a long history of complaints starting before thirty years of age. In order to diagnose any type of somatoform disorder, the symptoms cannot be “fully explained by any demonstrable general medical condition, by the direct effects of a substance, or by another mental disorder”. Many objective biophysiological findings have been
demonstrated to underlie the symptoms of ME/CFS. Patients meeting the criteria of ME/CFS must be excluded from the diagnosis of Somatoform Disorder. Member countries of the World Health Organization (WHO) are obliged to adhere to the regulations of the WHO's International Classification of Diseases (ICD) and use their ICD classification. In a letter dated January 23, 2004, Andre l’Hours of WHO headquarters clarified that “it is not permitted for the same condition to be classified to more than one rubic as this would mean that the individual categories and subcategories were no longer mutually exclusive”. Thus, ME (and CFS), classified as a neurological disease in the WHO ICD, cannot also be classified as somatoform disorder, which is classified as a mental or behaviour disorder.
 

mango

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"Leonard Jason, a professor of psychology at DePaul University in Chicago and a widely respected ME/CFS researcher, said that a good strategy for distinguishing between the illness and depression is to ask patients what they would do if they suddenly recovered. Those suffering from a major depressive disorder, he said, would likely say they didn’t know. “But someone with ME/CFS would probably begin making lists of all the things that they wanted to do,” he said."
http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome#.hb9X3XvlY
 

Sidereal

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The most important thing is to not appear overly preoccupied with your physical symptoms because they will diagnose hypochondriasis, somatisation disorder or even somatic delusions if they think you're psychotic etc.

If, however, you appear overly stoic and indifferent, they will say you are repressed and alexithymic and converting emotional distress into physical symptoms.

You lose either way so you gotta make sure you strike a balance between appearing overly anxious/preoccupied vs. too indifferent.
 

Sidereal

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Beware also of trick questions. If they suspect somatisation (which is what they think CFS is), they may not ask you directly if you are depressed or anxious because they know those questions are likely to make CFS patients recoil. They are more likely to pretend to accept the reality of your physical symptoms and ask things like, "Is all this getting you down? Does it ever get too much?" etc.
 

Mary

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@Tired Sam - I don't know if this will be helpful, but I've often thought it should be quite easy to distinguish depression from CFS - if someone is depressed, they are physically capable of exerting themselves but they don't feel like doing it. And actually physical exertion is supposed to help ease depression.

The opposite is true for CFS - most everyone here wants more than anything to be able to do things that they used to, but physically we can't - and we pay a very high price if we attempt to do so. So maybe, if the opportunity arises, stress that - the spirit is willing, but the body just can't do it - (basically rephrasing what Gondwanaland said above)

Good luck - I wish you the best. It is too bad we have to walk such a tightrope in order to get treatment!
 

geraldt52

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...You lose either way so you gotta make sure you strike a balance between appearing overly anxious/preoccupied vs. too indifferent.
LOL, "you lose either way".

I was forced to see a psychiatrist for my Social Security Disability application. To my utter surprise, I failed his short-term memory test pretty miserably. It was actually kind of disturbing for me at the time. What did he put in my file? "Patient failed short-term memory test, but didn't appear to be trying very hard." How should one appear when trying hard on a short-term memory test? I now despise psychiatrists...all of them. It's a nonsense "profession".
 

TiredSam

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Thanks for all the advice so far. What questions to watch out for and how to present myself is just the kind of advice I'm looking for.

When I first had symptoms of CFS about 18 months ago my Dr told me I had burnout within 5 minutes of seeing me, before he had examined me and without knowing anything about my lifestyle. I then tried a second Dr, who was very thorough, did all the tests he could think of, but in the end could find nothing and suggested the psychosomatic clinic.

After that I avoided the medical profession for over half a year, managing my symptoms on my own by pacing (I've done Bruce Campbell's program and found it very helpful). I've decided to give the second Dr one last chance, because he was very thorough. I took him a 5-page CFS-info document for doctors from the Charite, and to my surprise he seemed interested and said yes, he'd go through the checklist of things to exclude with me, so that's what we're doing.

I'd really like the diagnoses from the Charite because a) it will be more credible than a self-diagnosis when I have to tell people about my CFS (which I usually don't unless I have to), and b) I might need it in the future to claim benefits etc, which I currently have no intention or wish to do because I enjoy my work and am doing everything I can to arrange my life to carry on doing it. So I am prepared to jump through a few hoops to get this diagnosis, including seeing a psychiatrist. But if it gets too annoying I'll just have to give up on the medical profession again and go back to managing it on my own.

I think my biggest challenge is to avoid behaving in a way that could be interpreted as hostile / arrogant if the psychiatrist starts spouting psychobabble and expecting me to take it seriously. I didn't realise the dangers of appearing overly stoic, so thanks for that warning Sidereal. I am quite stoic and haven't allowed this illness to get me down so far, didn't know that could count against me too.

24 hours to go before I enter the lion's den ...
 

TiredSam

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You might want to watch the vid I'm linking. I don't know if it applies to you, but B12 deficiency, which many of us have, causes a range of neurological and *psychological* problems. Also linking one about brain histamines and neurological issues. There is more and more evidence of gut problems and gluten intolerance both causing a range of brain problems.
You should also take into account thyroid. Common thyroid tests can easily miss thyroid dysfunction. You might not be experiencing any of these symptoms, just seeing a shrink because it's part of the process you need to engage in...Welcome to pr and good luck.:thumbsup:

Diagnosing and Treating Vitamin B12 Deficiency‬
http://www.youtube.com/watch?feature=player_detailpage&v=QqjyAeOLyKM

'Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

5 Lies About Your Thyroid Disease That You’re Likely to Hear http://thyroid.about.com/od/thyroidbasicsthyroid101/a/5lies.htm

http://www.stopthethyroidmadness.com/
Thanks for that. My vitamin B12 was 431 pg/ml at the last round of tests less than a year ago. Thyroid all normal too. I also had an MRT of my brain which didn't reveal anything. By which I don't mean they couldn't find a brain ...
 

WillowJ

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I think @TiredSam has already been to his appointment, but I just wanted to write on this thread that I have heard stories of people saying their psychiatrist said they had no psych disorder and gave them a letter to this effect, and told them they were coping well and was very encouraging. Of course we all know the other kind of story.

I've never been so I have no personal experiences to relate.

TiredSam, I hope your appointment went ok.
 

TiredSam

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I was going to wait until the psychiatrist sent her report to my Dr before saying how it went but ok here's my report.

First of all @WillowJ I am quite happy to accept that my view of the psychiatric profession regarding CFS has been negatively affected by being exposed to so many of the "other kind of story" - in fact that's the only kind of story I've heard so far, from CFS patients, my internet research and the books I've read.

I know at least 4 people from 2 CFS self-help groups in my area who, after suffering from CFS for years and facing severe financial difficulties, have had to give up and accept a (wrong) diagnosis of depression just so that they can finally have their disability pensions approved (or half-approved). One of them even went on a rehab for depressed people where she was made to do sport and crashed so badly they sent her home. It was of course further evidence of depression. These are people I know who have been to Drs and psychiatrists in my area, so I was, to say the least, in a cautious frame of mind about psychiatrists.

I was also resentful of having to see a psychiatrist at all before I am allowed to present myself to the Immunology clinic in Berlin. According to the IOM report CFS should no longer be a diagnosis of exclusion - if it is, what happens to people who have psychiatric issues AND have CFS?

I know I may come across as paranoid, but I'm walking a very fine line here. In Germany CFS is classified in official guidelines for health insurance companies and social services as psychosomatic, so a diagnosis of CFS is often taken as confirmation that you have a psychiatric illness, and I've had to think very carefully about whether I even want the diagnosis, for many months I decided that I didn't. I have now decided to go for it, but if I ever have to claim benefits I will probably have a court battle on my hands that goes at least to one appeal, or have to accept a psychosomatic diagnosis and go on inappropriate rehab which will make my health worse before my claims are approved.

I've decided to go for the diagnosis because claiming benefits isn't part of my plan and I'm still hopeful that I can carry on working and managing / stabilising my symptoms by pacing. Plus I would like to deal with Drs who understand what I've got, and when I have to tell other people it will be easier and more credible to say "I have an immune system disorder diagnosed by the University hospital in Berlin" than "I've got CFS, it's a self-diagnosis". I just don't need the funny looks any more. I want my Cytokines and V02max measured so I can print the numbers on a T-Shirt.

Anyway, to start right at the beginning, my Dr gave me a list of 3 psychiatrists he recommended. I went to all of their websites and, by looking at the therapies they said they offered, chose the one that was the most "school medicine", or at least didn't advertise any quack therapies on their website (two of them did). I also went to Dr review websites, where a complaint from a patient confirmed that I had chosen the right Dr - "as soon as she has exhausted textbook medicine she has nothing to offer". Just what I was looking for.

I also stopped my Dr from writing "CFS clinic in Berlin" on the prescription to the psychiatrist and asked him to write "immunology clinic" instead, which he did. CFS is a dangerous word in Germany, see above.

My appointment was at 08:30. I have between two and three hours after getting up in the morning before I have to lie down again, so I was able to ring on the doorbell symptom free, bright-eyed and bushy-tailed. I was 20 minutes early.

I had to fill in a form about previous medical issues, mine and in my family. There are hardly any, but I put down the few I could think of (thyroid etc).

The psychiatrist was a pleasant, no-nonsense elderly lady who ushered me down the corridor into her room (making sure I walked in front for some reason - so I didn't attack her from behind with my concealed axe?).

She asked what brought me to her. I said that for the last 18 months I had been feeling tired after sport, that I would like to present myself to the immunology clinic in Berlin, and that before doing so I was working with my Dr through a list of conditions I needed to exclude. I then put the list in front of her, so that she could see that a psychiatric condition was just one of 8 other, more physical, things to be checked (others were sleep screening, Lyme, gastro blah blah etc). I was hoping to minimise the significance of my visit to her.

I think it helped that I was there because I wanted to further investigate my complaint, not because she was checking my claim for disability benefit or early retirement. I don't think she was at all familiar with CFS. I handed her the 7-page info document for doctors from the clinic in Berlin. She handed it back.

She asked what I meant by tired after sport. I described a 2-hour crash. I omitted to describe a 6-week crash. She asked if I had headaches, I said yes and described them accurately, pressure headaches in my forehead. She asked if I had stomach trouble, or trouble sleeping, I said occasionally, when I had overdone physical exertion, otherwise not really. I used the phrases "sport" and "physical exertion" (and even "post exertional malaise" at one point, but she didn't pick up on it) and left it at that. She didn't ask for further details so I didn't have to decide whether to tell her that physical exertion that leaves me exhausted also includes walking upstairs, carrying a shopping bag etc. or that I have to lie down at least twice during the day. I probably wouldn't have mentioned any of that to her if asked, why should I give her the ammunition to make a false diagnosis when my priority is to get to Berlin where they have doctors who understand CFS?

She asked about my job, I told her that I teach about 20-25 hours a week, plus 10 hours lesson preparation, I don't find it over-burdensome, really enjoy it, and don't teach at the weekends (all true).

She asked about my children (13, 17 and 18) to which she replied "Oh, they're grown up then" and moved on.

She asked about my marriage, was everything ok? I said that my wife and I had been together 25 years and got on fine (also true).

She asked if anything had been bothering me lately. I said no. (true - apart from my health and having to see her obviously).

She examined me physically by taking my blood pressure, whacking me in the knees with a hammer, tickling my feet and making me pull funny faces.

She said she would be sending her report to my Dr. I didn't ask what she was going to write because I didn't want to appear paranoid or anxious and I'll find out soon enough anyway. She wished me good luck with my further examinations, and we said our goodbyes. Whole thing lasted 15 minutes. I think it went well. She asked me the questions she had to but wasn't pushy, I don't think she's heard about CFS, I wasn't making a claim, she didn't seem to have an agenda or an axe to grind either way.

Thanks to everyone for their advice, support and listening.