Somatoform / Conversion Disorder Diagnosis

[Hoosierfans]

Let me preface this post by saying that the diagnosis of “Somatoform Disorder” or “Conversion Disorder” is WAY overused and often used by doctors who can’t, or don’t want to to find a cause behind physical symptoms. And it’s not valid, is dismissive, lazy and insulting when used that way.

In this post, I’m going to discuss it and ask questions as it relates to MY situation and please understand that my personal view is that it is partially valid, for me.

I am wondering what techniques people have found helpful — medication, psych therapies, functional neurological therapies — helpful for somatoform disorders. As a new psychiatrist, and a separate neuropsychiatrist, explained it to me — it is NOT that your symptoms are “all in your head” or you “are imagining them” or you “just need to get over it and push through”…nope, nope, nope. What it IS is that your body experiences very real physical symptoms (in my case dizziness, fainting episodes, and pain) and becomes hyper-focused and hyper-vigilant on them. It’s akin to OCD. And indeed, I’d you look at my brain scans, I have significant hypometabolism in my frontal lobe, which is typical of anxiety, obsessive disorders.

I agree that this is PART of my issue. Yes, I have Me / CFS. I have MCAS. I have POTs. I have neuronal antibodies (which I’m getting IVIG for). But I also have dizziness, extreme anxiety, and severe cognitive dysfunction that haven’t responded to years of various meds and therapies. My brain is CONSTANTLY focused and anxious about my symptoms.

I am going to continue to try treatments aimed at my symptoms and diagnoses, but I need to treat the somatoform / obsessiveness as well. I’m curious what others have found helpful.

In the past, I’ve tried the Gupta program, DNRS, neuro feedback, Joe Dispenza meditation and tapping to try and “break” the obsessiveness and I haven’t had success.

 

[Hip]

Perhaps the only one success story of psychological treatment for ME/CFS that I have seen on this forum was from Reverse Therapy, which is a one-to-one therapy with a psychologist (can be done via video conference). One member claimed Reverse Therapy more or less cured her. You might like to read the blog of her cure here.

In Reverse Therapy, the therapist tries to figure out what everyday life events or stimuli might be stressing you, even though you may not be consciously aware of them. Once they are identified, you then are trained so that these factors no longer stress you.

Out of the 31,000 people who have joined PR over the last 10 years, that is the only success story I remember seeing. So I don't think the success rate is that high!



But if you feel that by personality you might be someone who is susceptible to becoming unconsciously stressed from some as yet unidentified stressors, it might be worth exploring Reverse Therapy or similar. The Reverse Therapy therapist who cured the PR member is this one.


If there is something constantly unconsciously stressing you out, note that chronic stress can weaken antiviral immunity, so perhaps that then makes it harder for the body to clear viruses.

Personally I think in a very, very small subset of ME/CFS patients (something like 0.1%), unconscious stress might play a role.

However, in general, I would not consider ME/CFS to be maintained by chronic stress, and in general I don't believe ME/CFS is maintained by any mental factors, stress or otherwise.

Many cases of ME/CFS are triggered with major chronic stress being one of the factors, this we know from studies (and I suspect this is because major chronic stress weakens antiviral immunity); but I don't think many cases are maintained by chronic stress.

My brain is CONSTANTLY focused and anxious about my symptoms.

The controversial therapy which specifically tries to you train you to ignore your symptoms is the Lightning Process. The methods used are secretive, but a good post about how it works is given here. The ME/CFS patient who wrote that post did not achieve any improvements in his ME/CFS after completing the 3-day Lightning Process course. But his description of the methods is informative, given that this therapy is always so secretive.

 

[wabi-sabi]

I think @Hip gives some good advice here.

It certainly is a bigger challenge to have ME/CFS, MCAS, POTS and a psych diagnosis at the same time. The main trouble I see is having to monitor your symptoms closely enough that you don't injure yourself with a push crash cycle, but at the same time without triggering anxiety issues. It's a fine balance to manage.

To the extent that you feel a psych diagnosis is legit for you, I would recommend getting real psych care. I know that's not easy to find or afford if you are in the US. Plain old, nothing fancy talk therapy has always been helpful for me. Someone who specializes in chronic illness and its particular challenges is good to help you sort out what is mental and what is physical for you. I would warn you away from stuff like Gupta and Lightening process. These are not legit medical care, either physical or mental. Massage, meditation, accupuncture, music therapy, and guided imagery are all legit things that can help you calm your system. But they are not substitutes for mental health care when you have a mental health diagnosis.

I have a therapist to help with the griefs and challenges of ME/CFS. It's really helpful in helping me cope. But really getting the POTS stuff under control with medications has helped my cognition, dizziness and "anxiety". in ways that therapy can't. Different problem, different solutions.

 

[lenora]

I think it all depends upon how bad your anxiety then panic disorders become. I'm 75, female and have probably had anxiety for most of my life (without really being aware that it had a name...and that I had it).

It first manifested in a "can't ignore manner" when I had my first surgery around age 35....this was my spinal cord and it caused terrible upheaval and pain in my life. Cysts form inside the cord, extend to the nerves and unimaginable pain and other symptoms are the result. I was not prepared for surgery either....the body needs proper nourishment and to be as strong as possible.

I managed to climb out of that hole myself via AA books (never had a problem with alcohol) but it seems like a sensible way to get through each day. It did finally leave of its own accord.

A few years later I had brain surgery and I couldn't get over it myself, so took small doses of buspar, as needed. I also went to a group for fellow anxiety sufferers....that was very strange, Survivors Inc., as I recall. I'm sure each group is different.

Fast forward a number of years....I was raising my daughters while my husband was out of town during the week, bought groceries at the weekend and was off again. I was alone and had to help our youngest overcome an illness that almost took her life. I feel that if we had family therapy at the beginning of my illness, this particular turn of events could have been avoided. One learns.

Both girls went off to college, Rod continued travelling, I took a deep tour inside myself in order to make some sense of what happened and I emerged and had 3 rounds of shingles (I've had 4 altogether) which kept me bedbound for a year. Nasty things and I encourage people to at least think about the new vaccine. It is given in two doses over a period of 4-6 wks. I never want shingles again.

Shingles led me into panic disorder and I was in a mental hospital for a week. Not the worst outcome in the world for me....it confirmed the original diagnosis and since it couldn't be brought under control, I went on xanax. The buspar had stopped working. I'm on the lowest dose twice/day and have been on the same dose for the past 10 years. No problems and it has finally controlled what was a beast. My oldest daughter also has anxiety and sees her own therapist. I believe it runs in our family and is actually quite horrible in any form, but in it's worst form especially.

I did try vitamins, herbs, acupuncture...all of the natural alternatives before I reached this point. One doesn't make the decision easily but I'm very glad that it's available to me. Life does take a toll on us.

My doctors know I'm sick because the fact is that I am. OK, I have additional health challenges, but not once have I ever had to defend myself to a doctor. I know that many of you have and I'm sorry. If you'd like more info, please contact me and I'll be glad to provide it. Yours, Lenora

 

[Wishful]

Out of the 31,000 people who have joined PR over the last 10 years, that is the only success story I remember seeing. So I don't think the success rate is that high!

I imagine some marketer would try to somehow spin that as a huge success.

 

[Rufous McKinney]

What it IS is that your body experiences very real physical symptoms (in my case dizziness, fainting episodes, and pain) and becomes hyper-focused and hyper-vigilant on them. It’s akin to OCD.

yeah- that happens, its a tedious aspect of this illness and the degree to which one can be less "vigilantly focused" in unhelpful ways, the better.

One of our issues if we have to be hypervigilent. Or look what happens? We get so punished for a tiny slip up.

 

[PhoenixDown]

Let me preface this post by saying that the diagnosis of “Somatoform Disorder” or “Conversion Disorder” is WAY overused and often used by doctors who can’t, or don’t want to to find a cause behind physical symptoms. And it’s not valid, is dismissive, lazy and insulting when used that way.

There is absolutely no convincing body of objective evidence that proves Somatoform / Somatization / Conversion disorder exists. They should be given no more credibility than the hypothesis of misaligned chakras or too much negative orgone energy or evil fairies causing physical syndromes.

 

[wabi-sabi]

One of our issues if we have to be hypervigilent. Or look what happens? We get so punished for a tiny slip up.

That's the kicker, isn't it? No one wants to get all bent out of shape monitoring all of your symptoms terribly closely. But if we don't watch out, well then bad things happen.

 

[Rufous McKinney]

But if we don't watch out

Perhaps because of all the "triggers"....

AND the unpredictability of the body responses.

 

[Judee]

And indeed, I’d you look at my brain scans, I have significant hypometabolism in my frontal lobe, which is typical of anxiety, obsessive disorders.

Some ME researchers have found this in ME as well.

Which came first for you, the ME or the condition you're describing?