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If your psychiatrist thinks ME is a psychosomatic disorder...

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
This document is a bit dated (2006) and I'm pretty sure that it was mentioned on this forum.
However, we tend to forget about it. So, if you are dealing with a psychiatrist who thinks
your condition is "all in your head", here is a very useful document, clinical guidelines for psychiatrists
(by Eleanor Stein).

http://www.aqem.org/includes/documents/guidelines_psychiatrists.pdf

Let me know what you think about it and if it did help you in any way.

Don't despair! =-)

BDF

P.S. Take a look at the 'references' section. Lots to read on the subject.
 

Gamboa

Senior Member
Messages
261
Location
Canada
I went to a psychologist at the request of my LTD company who definitely thought it was a psychosomatic disorder. She gave me some long multiple choice test that had a lot of questions about pain, headaches and other symptoms of being unwell. I have headaches almost everyday so checked off that headaches are a problem with my daily life. There were many similar questions to one like this. When the test results came back the psychologist said I was focusing too much on my symptoms!! How else are you supposed to answer these questions? I asked her if a cancer patient undergoing chemotherapy said nausea was a major problem would she have said they were focusing too much on it?? I argued with her for a few visits about this, provided her with all sorts of information about ME/CFS but I don't think I changed her mind. I then stopped seeing her. Unfortunately her summery of my visits is now on my records with my LTD company, my GP and Canada Disability Pension Plan....and guess what?? She recommended CBT!

Meanwhile I saw a psychiatrist who believed ME/CFS is not a psychosomatic disorder and he declared me mentally fit and said I did not need to see him. For some reason his report is not in my records according to CPP Disability. What?? Did they conveniently lose this?? I'm in the process of checking up on this.

Gamboa
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've not found that bringing factual information into any medical professional has made any difference if they have fixed and unhelpful beliefs about ME.

A psychiatrist who works for an insurance company is going to know exactly what they have to say to keep those cheques rolling in.

Good luck, Gamboa. I know what it is like to go through a similar battle and nothing would surprise me...
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Thanks for the doc, will have to reivew it some day.

I saw a physchiatrist when i had flare up of pain and my employer ignoring a Drs letter, he said my issues were secondary. He was nice and did not think I was mental! Like it has been said on this site many times, if you dealt with what we dealt with every day, it is going to catch up to you eventually!

GG
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
I went to a psychologist at the request of my LTD company who definitely thought it was a psychosomatic disorder. She gave me some long multiple choice test that had a lot of questions about pain, headaches and other symptoms of being unwell. I have headaches almost everyday so checked off that headaches are a problem with my daily life. There were many similar questions to one like this. When the test results came back the psychologist said I was focusing too much on my symptoms!! How else are you supposed to answer these questions? I asked her if a cancer patient undergoing chemotherapy said nausea was a major problem would she have said they were focusing too much on it?? I argued with her for a few visits about this, provided her with all sorts of information about ME/CFS but I don't think I changed her mind. I then stopped seeing her. Unfortunately her summery of my visits is now on my records with my LTD company, my GP and Canada Disability Pension Plan....and guess what?? She recommended CBT!

Meanwhile I saw a psychiatrist who believed ME/CFS is not a psychosomatic disorder and he declared me mentally fit and said I did not need to see him. For some reason his report is not in my records according to CPP Disability. What?? Did they conveniently lose this?? I'm in the process of checking up on this.

Gamboa

Make sure you do find this report. My GP had to write many many letters to let them know that I was very sick. He had to explain that medicine is not always black or white. There are shades in between. I am one of those cases. He argued a lot with them, trying to refute everything they were saying that was not right. He worked so hard for me!

The internal medicine specialist I saw was the worst ever. After a few minutes, he looked at me and said: "What you need is to see a health psychologist and to start an exercise program." I was there to get a second opinion and I had wasted my time! The worst part is that I was very sick that day. The whole time I was in his office, I had my head in the garbage can, I had flushed cheeks, my lungs were burning, and I felt so awful. Who in their right mind would prescribe exercising to someone who has the flu??? I had no choice but to go along with his "plan" since I wanted my insurance to agree with me that I was very sick. However, I was not able to start exercising. How surprising!

Like you, my health psychologist also tried to trick me. She gave me a list of symptoms and then said: "Is this what you have?" I went through it and then said it does look a lot like it except for a few things. Then, she showed me the title of the table. It was the checklist for conversion disorder or was it somatisation (MUS)? I can't remember. She explained what it was. I said right away: "I have never heard of this before but I know what I have is real. I am not making it up. I have never been so sick in my whole life and it does not go away. I can't make up my sore throat, my flushed cheeks and low-grade fever. I have lost a lot of weight because I can't eat anymore. I am losing my hair. My lungs are burning. I cough a lot. I should not be here but in front of an infectious disease specialist. Never know... what I have might be contagious." I tried to contain my anger (I should say my RAGE!) while I was talking to her but she saw I was very upset. She even apologized afterwards (many weeks later) for using this tactic. She wanted to trick me to see how I would react. She said that sometimes they are able to see if the person is making it up or not. She finally wrote down that I was not depressed and I had no anxiety or mood problems. She also added that most of the times I was too sick to make it to her office but I insisted to keep going. It was enough for my doctor to continue to look for whatever it was that I had. The internal medicine specialist finally agreed with her that what I have is real and that I'm not making it up.

Strangely, I ended up in front of an infectious disease specialist which was one the best doctor I have ever seen. He explained that he could not find what is wrong with me but that there are systemic illnesses like that which take forever to develop. He would not be surprised if my doctor would find something later on. He even offered to see me again if I needed his services. I know now that I was very lucky.

What I find so unfair is that we have to go through all this when we know that we are very sick. Too sick to even attend our sessions with the psychiatrist or psychologist. I remember barely making it to her office, in sweats, and too tired to have a conversation with her. I was confused, not being able to think straight. I just wanted to go back home and lie down. I think I only missed once. When she asked me why I never missed my sessions, I answered: "How can I make you believe that I am really sick if you never see me in my worst moments? It would defeat the whole purpose, wouldn't it?"

I ended up having 7 specialist reports. They could not find anything in my blood, but all agreed that I was very sick and they could not figure it out at this time. Sometimes, doctors can be humble. ;-)
I also had letters of my co-workers who saw me change in front of their eyes.
I wrote a 15 page long letter that compared my life before to now. Actually, it was a chart that shows everything that I was able to do before versus what I can do now. It was easy for them to see right away how it had affected my life. I had a lot of help for all this. Just make sure you are not doing this alone.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
I've not found that bringing factual information into any medical professional has made any difference if they have fixed and unhelpful beliefs about ME.

A bit off topic but I've found the same thing to be true of the people in my life. If they have a preconceived notion of CFS, which many seem to have simply from the name alone, it seems they just don't hear anything else I say about it and continue to think that it is all about just being tired. I can see that doctors really wouldn't be any different if they already have preconceived notions about it too. Even though my current doctor has no answers for me I'm lucky he gets what I'm dealing with. The first doctor I saw just thought all I need was aerobic exercise that would bring up my heart rate and insisted her patients who improved did so this way (as well as with CBT). Needless to say I'm dubious, and went on to find a new doctor as soon as possible.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
A bit off topic but I've found the same thing to be true of the people in my life. If they have a preconceived notion of CFS, which many seem to have simply from the name alone, it seems they just don't hear anything else I say about it and continue to think that it is all about just being tired. I can see that doctors really wouldn't be any different if they already have preconceived notions about it too. Even though my current doctor has no answers for me I'm lucky he gets what I'm dealing with. The first doctor I saw just thought all I need was aerobic exercise that would bring up my heart rate and insisted her patients who improved did so this way (as well as with CBT). Needless to say I'm dubious, and went on to find a new doctor as soon as possible.

I agree with both of you on that one. My health psychologist had an opened mind about CFS. She thought that the cause would eventually be found. It did help tremendously with my case. The atrocities we hear... I had to wait a year and half to get my insurance settlement and it took longer for the CPP to kick in but it's a very short time if I compare this waiting period to many here who went through this as well.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Boule, thankyou for the link. The case management agency wants me to see their therapist a few times. I'll print this out and see what her reaction is. If they can test us, shouldn't we test them in return?

I wonder what makes doctors so arrogant and close-minded. Are they so insecure that they are afraid we'll find out they are not experts in everything? Is is because society sets them near the top of the hierarchy?

If a doctor treats me with respect and as a partner in my sick-care we get along just fine. When they treat me like ignorant trailer trash, who is expected to 'obey doctor's orders', without asking questions, that doesn't go over so well.

When it comes to doctors, especially dangerous pharmaceuticals, I follow the Reagan Doctrine: "Trust, but verify".
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Boule, thankyou for the link. The case management agency wants me to see their therapist a few times. I'll print this out and see what her reaction is. If they can test us, shouldn't we test them in return?

I wonder what makes doctors so arrogant and close-minded. Are they so insecure that they are afraid we'll find out they are not experts in everything? Is is because society sets them near the top of the hierarchy?

If a doctor treats me with respect and as a partner in my sick-care we get along just fine. When they treat me like ignorant trailer trash, who is expected to 'obey doctor's orders', without asking questions, that doesn't go over so well.

When it comes to doctors, especially dangerous pharmaceuticals, I follow the Reagan Doctrine: "Trust, but verify".

Have you received your diagnosis, yet?
If not, be careful with handing out any info... They might think you are making it up.
They'll say you pretend having whatever is in this document or that you are a hypochondriac.
My psychologist was willing to learn more about this illness.
As Ocean and ukxmrv said it earlier, it's not the case for everyone.