Frustration and Fortitude

Friday I had my first follow-up with my regular neurologist after having seen the fancy-pants guy at Rush and having gotten the Functional Movement Disorder diagnosis.
It was, um, interesting.
I'm not sure exactly what the note from Rush said, but it seemed from the way the conversation proceeded that my neuro is looking at FMD from the icky, old-fashioned "conversion disorder" perspective.  Joy.  Fortunately, she is willing to learn and wants to continue following up with me and isn't just telling me to get my crazy ass off to the psych department.

And, even more fortunately, my therapist specializes in neuropsych and is all over researching FMD and working with me and the rest of my docs on treatment options.  Hopefully after my therapist and neuro talk we'll get closer to the same page. 

I fell like I should clarify, before I go further, my issues with "Conversion Disorder" as a label. 
1.  There is still no adequate scientific model explaining how one develops conversion.  What there is seems to be mostly the old Freudian model with a few tweaks.
2.  Most of the information available and most of what regular MDs (as opposed to some/most psychiatrists and psychologists) are taught or have access to tends to be the older Freudian model.
3.  The Freudian model essentially boils down to "the patience has some subconscious problem or conflict that manifests as a physical symptom."  While that may seem fine on the surface, it still has a hell of a lot of baggage in the area of blaming the patient.
4.  A lot of the descriptions of Conversion tend to incorporate broader mental health problems as part of the definition.  And remember, before it was called "Conversion" it was called "hysteria."  Again, more baggage about relative "weakness" and "character."  Some of these descriptions are actually sort of offensive and not exactly "objective" either.  Again, this leads to further issues in the doctor-patient relationship.
5.  There is no distinction made between psychosocial and medical stress.
6.  There is no allowance made for patients who are basically psychologically healthy but experiencing functional (physical) symptoms.
7.  There is no acknowledgment of the recent research showing clear and evident changes visible in SPECT and PET scans of the brains of people suffering FMD (or Conversion) demonstrating that their nervous systems are doing *something* weird.

In a lot of ways, it all boils down to the old mind-body dichotomy problem that I cursed at Descartes for a few weeks ago.
Clearly, more research is needed, but I think the way MDs are taught and taught to think about "psychological" issues needs to change in a big way.

Anyway, back to the neurology appointment.  After we established that I am already on antidepressants and have been for several years and that they have had no noticeable effect on my FMD (sigh) aside from one point when we thought Zoloft may have been causing the damn movements as they started about a month after I started it, we moved on to "um, do you have a therapist you see regularly who you trust?"  Bear in mind, I've been telling neurologists for the past 2 years that I am being seen regularly by psych, but that seems to be easily forgotten.  I guess if I had to see people in only 15 minute spans every 6 weeks or more I wouldn't be able to remember jack shit either.
So, I gave her my therapist's number.  She wandered off to try to get in touch with her, but couldn't.  So, she came back.  We need to work closely with your therapist and maybe your psychiatrist (who I rarely see and then only for med reviews).  Yes, okay, good.  I'm all over this one.
Then I brought up physical therapy.  Yes, good.  Excellent.  Got that squared away.
And then I asked about disability. 

You'd think I asked her to drill a hole in my head.
"Oh, no!  That would be a terrible idea, I just couldn't support that.  The whole idea is to get you functional and back in your program and back to work!"
Blink.  I let the subject change while I took a few deep breaths and came back to it and said, basically:
"Look, I've been out of work for 2 years.  No one can tell me how long it will be before this treatment improves my functionality or even if it definitely will, but the best guesses seem to be in the range of at least 6 months and probably longer.  I don't want disability so I can sit on my ass at home and get paid.  But there are financial concerns here that are becoming increasingly problematic.  And disability isn't just about whatever pittance my tax payments over the years will get me - it will get me access to occupational retraining programs, back to work programs, home business assistance, and a lot of other things."
She still wasn't convinced and told me to ask my psychiatrist.  Sigh.  My therapist things applying for disability, especially since it's not permanent is a perfectly reasonable idea. 
Also, no one seems realize that my goal is NOT to get back to my grad program.  If that is the doctor's measure of success, she's going to be really damn disappointed.  I thought I'd made that clear, but apparently I didn't.  So, I guess I should start blathering at length about teaching/crafting/homesteading as goals during appointments.   "I need to be able to ride a horse and herd alpaca, can you get me to that point, doc?"

This is not the first time I've had this reaction to asking about disability (which I HATE asking about, I might add).  My primary care doc did the same thing (but was perfectly willing to fill out paperwork saying almost exactly the same thing so I could put my loans in forbearance).  I'm starting to think there's some memo going around that says "Oh noes!  Disability will turn your patients into feckless zombies!!!!  Unless they're on the actual verge of death, it will make them worse!  They'll never get well if they get Social Security!!!!"
So, yeah.  We'll see what happens with that one.

Yesterday, I found out that physical therapy has an enormous backlog and not enough therapists.  They can't see me until August 20.  I'm still deciding what to do about that.  I should call my insurance company and see if I can go elsewhere and still have it covered, but I'm sick (heh) of dealing with this crap and doubt I'll do much about it until next week at the earliest.  My alternative plan, which is only half-joking, is to buy the Wii Fit Plus package and do my own damn PT.

In the meantime, I am doing slowly gradated exercise which is supposed to be good for both FMD and Chronic Fatigue Syndrome and won't hurt my arthritis.  Walking for ten minutes every day even if I feel like total, utter ass.  I'm only supposed to do the ten minutes but this being me, of course I did more.  And I am suffering for it.  Never said I wasn't stubborn to the point of stupidity.  So, I clearly need to step back down to the actual ten minutes if I don't want to have to take as many NSAIDs and muscle relaxants (which I don't) or need to sleep for 14 hours.
The idea is to slowly build up stamina and retrain my brain into accepting certain motions and sensations as normal and okay.  This also means that I have to push past certain levels of discomfort either by just sucking it up or if necessary with meds.  But I have to be careful not to overdo it or I'll exhaust myself which sort of defeats the whole purpose. 
Early on, I am not enjoying this so much.  The walks themselves have been fine until the very end, when I start to feel sick to my stomach and dizzy.  Then within about an hour my whole back goes stiff and hurty.  And I've been wanting/needing to sleep 14 or more hours.  But this will make me functional, right?  :P


Bookewyrme said...

Jeez, what a pain that the docs aren't always listening to you as well as they might. But, it sounds like you're making progress. Hope it keeps up. *hug*


Alwen said...

So let me see if I understand the "conversion" model: basically they seem to be saying "The patient is nuts and at some level they are making their problems up."


And wait! Let me guess. A lot of conversion patients are ... dum dum DUM dum.... women, right?


straightens clothing

Sorry. I grew up in a blame-the-victim religion, and it drives me five kinds of wild to find that weed growing in medicine, too.

Shoveling Ferret said...

Yep, lots of Conversion Patients are women. And "hysteria" was almost always exclusively applied to women. The history of terms like "shell shock" and "battle fatigue" mapped along-side "hysteria" and "somataform" and "conversion" is also interesting and intriguing. For a little while, glancing at the historical records, it seems like women were "hysterical" while men had "shell shock"
Obviously that's changed as at least some understanding has become more sophisticated and PTSD has gotten more research, but...yeah...

And then on the flip-side, men aren't allowed to be "hysterical"

This Time article from 1952 is sort of interesting in that respect - men can be hysterical, but if they are it's conversion disorder, but more likely they're just malingering. Sigh.

Anonymous said...

God Bless you. Hang in there. Functional Movement Disorder/Psychogenic/Psychosomatic/Conversion disorder. "You mean it's all in my head doc?"


But they say that the prognosis is better for the patient if they believe the diagnosis.

Please keep posting your progress. Your not the only one out there with this diagnosis. It makes (at least me) feel better to know someone else is jumping thru the same hoops and getting the same reactions.

Good luck and keep the faith.

PS. Here's a good explanation from a neurologists point of view on PMD's:


Shoveling Ferret said...

Thanks for the comment, Anonymous. I'm glad seeing my story has helped you - that's a big part of why I post about my various chronic illness, especially since it's been so hard to narrow down - because I know there are other people out there going through similar things and I want them to know they aren't alone.

Thanks for the link, too.

Anonymous said...

The Psychogenic Movement Disorders: Neurology and Neuropsychiatry​ (Board Review Series)

At amazon.


It's the only textbook I could find on the subject. It's on google books as well if you want to peruse it before you buy.

The NIH is always doing studies on PMD/FMD too. Don't know if it's something you would be into. I got in touch with Mark Hallet (He's the head of the research dept. over there for movement disorder's and one of the authors of the book).


He put me in touch with his coordinator.

They said they would like me to send them my medical records too see if I would be right for one of their studies.


Don't think I'm going to do it though. I want to get better, not be part of a study. Selfish maybe, but hey life is tough enough for folks dealing with this condition.


The new haircut looks nice. And the shoes...wow.

Were do I get a pair of those?

Shoveling Ferret said...

Thanks for the links - I may see if I can get someone to check out a copy of the textbook from the university library. I go back and forth between wanting to learn more and not wanting to read any more because it just makes me more conflicted, less likely to thing the dx is correct, and generally confused.
It looks as though I'm not a candidate for the currently open studies - active autoimmune disease (whee, fun) is an eliminator.

The Vibrams you can buy at REI and a couple of other places, and online, though sizing is a bit weird. Husband is loving them.