Well...I wasn’t diagnosed with depression

[soxfan]

I finally after a ten week wait had my appointment with the Psychiatrist. I handed her my very detailed symptom
List with a description of each one and how they make me feel.
She spent most of the hour going over my medications I have taken in the past.

She came to the conclusion that I am extremely sensitive to medications Duh..
She asked if there is any medication that relieves the fatigue and I told her Ativan. I explained that when I am extremely tired and absolutely have to attend something or do something I take half a pill and it will relieve the awful fatigue and make me feel a different kind of fatigue that helps me get through whatever it is.

I explained I only use it in these instances and not daily. She agreed to write me a prescription for it but I was only to use sparsely and I agreed.

She asked me what she thought causes my fatigue ...aren’t I suppose to be asking her that?
I mentioned that I had been diagnosed with CFS in the past and that I haven’t found anyone here to help me. Then she said well...CFS is under the category of psychiatric medicine. YUP okay I knew then I was in trouble.

Long story short...She didn’t give me the name of any doctor that knew anything about CFS but did refer me to a Psychologist.
In the end she diagnosed me with GAD and CFS and walked me to the door.

Now this is DUKE
hospital in NC...how in the world am I ever going to find a doctor who understands?

 

[Blue Jay]

Utterly frustrating, Soxfan, and all too common an ocurrence. When I told my GP that I tried to rest as much as possible when my symptoms were going through the roof he said, "Well, I wish I could have a rest myself.

 

[Judee]

I understand. It's so frustrating. Started with a new PCP doctor in April and it seemed encouraging because she started to refer me to specialists.

1) New endo was going to "help with the mystery" but is quickly abandoning that--"I want to see you in 3 weeks quickly became don't follow up until September. Not to mention, dealing with her confused & impatient staff makes me want to cry everytime I have to talk to them.

2) Cardiologist's office won't schedule consult needed for tilt table test because, "he is no longer doing the POTS clinic" even after my PCP messaged him saying she wanted me to see him so he could check out my heart.

3) Still have first Rheumatology appointment next week. We'll see how that goes.

I'm feeling like I should have known better than to start on this journey from past experience and from what I've read here happening again and again. Not to mention how difficult it is to even get myself to all these appointments. It's been such a lesson in futility. I understand how you feel.

Edit: I just saw this post by @gbells: https://forums.phoenixrising.me/thr...-more-try-no-3-the-lupus-vs-seids-saga.75717/

It sounds like he is in NC. Maybe you could ask him if he knows of any ME/CFS specialists though from reading his thread it sounds like he might be having the same difficulties we all are but just a thought.

 

[soxfan]

It seems like I just get pushed from one doctor to the next because none of them want to deal with me. It is utterly frustrating mostly because none of them knew me when I wasn’t sick so they have no idea how active I was.

I don’t know how psychotherapy is going to make the fatigue magically disappear.
I am so upset today that I really am speechless.

I think I am going to message her and ask if she knows any doctors who are familiar with CFS even though she hinted it was a “psychological illness”.

I am also seriously considering getting a private PCP ...one that is not affiliated with a hospital so they will be able to spend more than ten minutes with me.

 

[Judee]

I am also seriously considering getting a private PCP ...one that is not affiliated with a hospital so they will be able to spend more than ten minutes with me.

I hear you. Not sure how up-to-date the following website is or if you already saw this but hoping this might be helpful to you: http://www.cfstreatmentguide.com/doctors-and-clinics.html

Edit: I understand your frustration. Just messaged my endo but her office staff called me back to answer the question. I can hear that they don't even understand the test themselves so wondering if they are relaying my very clear question to the endo in a clear manner. No way to really get through to my endo to find out and I don't want to get her angry with me because I keep trying. Guess I'll have to wait until September to discuss all this with her.

In the meantime go thru with a test that may have a useless result for me.

 

[Shoshana]

Now this is DUKE
hospital in NC...how in the world am I ever going to find a doctor who understands?

Gosh, it is nice to see you, and read your update, @soxfan

But my first raction to reading about that appointment you had, is that she does not understand HERself, it seems to me. Much less anyone else, or you.

Though it seems like she acts as if she understands, while she indicates that she doesn't.
Mixed messages? Has she heard of that?

I appreciate your sharing that, though.
And, i am glad you got the script. The small upside, maybe.

~~~~~
Now after reading your 2nd post in this thread, @soxfan
i want to add that i am sorry that you are understandably very upset, for very good reasons. And those plans sound reasonable to me, that you mentioned doing.

@Judee
That sounds like another upsetting run-around, that you have gotten, as well. You deserve better medical care than that.

 

[Shoshana]

@Judee
Re-reading your post above,
I agree, that yes, these are "lessons in futility" ….I understand. It is so frustrating, and yes, we use our hopes, and our very difficult and small bits of stamina on these appointments and contacts.

Yet, IF possible, we need to go, to be certain we know we tried, and that we did not possibly miss the chance that might have helped us.
Until we either get some help, or get better, or just cannot go anymore, for so many reasons.

And it is very frustrating that office staff do not comprehend, and we cannot speak directly with the doctor or get a truly adequate reply to a timely and sensible question.

 

[soxfan]

@Shoshana ...I agree about the appointments. I have waited anywhere from a month to 3 months for an appointment. Most of them end up being disappointing. I also feel if we can keep going we need to. I always think what if they had an answer and I didn’t go. Yes they are hard and tiring...the one for me yesterday was brutal as I get easily mentally fatigued.

I don’t know if I am going to bother with they psychotherapist appointment. They never called so I am thinking no. I am just not sure what they could do.

@Judee ...Thanks for the link. I will check it out. Most doctors who “claim” to under stand CFS bankrupt you almost the minute you walk through the door..or don’t take insurance.

 

[Judee]

Most doctors who “claim” to under stand CFS bankrupt you almost the minute you walk through the door..or don’t take insurance.

I absolutely agree with this. We have to be careful on that too.

 

[CFS_for_19_years]

@soxfan, if you ever need to be in contact with the psychiatrist again, this may come in handy:
Assessment and Treatment
of Patients with ME/CFS:
Clinical Guidelines for Psychiatrists
written by Eleanor Stein MD (psychiatrist)
http://emerge.org.au/wp-content/uploads/2015/01/Clinical-Guidelines-for-Psychiatrists.pdf

 

[nyanko_the_sane]

As for psychiatrists I gave it a try, but the lady thought I was faking it and also thought I showed signs of hypochondria. All this because I was trying to teacher her about ME. I told her off in an email which she never responded to, Talk about an awful insensitive doctor!!

Some people do respond to certain psych meds, but there are also side-effects to a lot of those drugs. ME does stir up a lot of underlining conditions in people, like crippling anxiety and depression. So don't hesitate to seek help if you need it.

Don't get me started about the see you in three months for a followup, and I am like totally suffering. It is like they are saying it's not my problem you are not feeling well, the numbers say you are fine. To add insult to injury, they tell you are doing great with a smile. What sadistic so and sos.

But not all health care professionals are this bad, a lot do care and want to help. It is just the luck of the draw and the fact that ME is so poorly understood. We really need to be our own advocates and help those doctors to understand. When we do this, we might just be doing someone else that comes along a great service.

 

[soxfan]

@CFS_for_19_years ...Thank you! I printed it and will bring to my next appointment which will be with a LCSW...why a social worker I have no clue. At this point I am doing what they want in the hopes someone will wake up and send me to someone who understands this illness.

@nyanko_the_sane ....I know for a fact the psychiatrist doesn’t understand CFS. I handed her a detailed symptom list with descriptions and she spent maybe a minute looking over a three page list. The rest of the time was spent talking about medications that didn’t work or that I was highly sensitive to. Complete waste of time and now I am on another two month wait to see the social worker...arggggg

 

[nyanko_the_sane]

@nyanko_the_sane ....I know for a fact the psychiatrist doesn’t understand CFS. I handed her a detailed symptom list with descriptions and she spent maybe a minute looking over a three page list. The rest of the time was spent talking about medications that didn’t work or that I was highly sensitive to. Complete waste of time and now I am on another two month wait to see the social worker...arggggg

I so feel your pain.

I worked with an advocate provided by my insurance, but that didn't lead to much either. You need to arm yourself with as much information as possible and call your own shots. I bumbled around in the system for a number of years before I finally had a clue as to what was going on, As we all know, even when we have an idea of what we are up against, it can still be really hard to get the support we need.