"It's all in your head." "I don't think it is." "Well you would say that."

September 19, 2012 11:07 AM

I'm dealing with chronic pain and fatigue; after several specialists were unable to find the cause, I was referred to a pain clinic. I had an evaluation with a psychiatrist today, and at the end I asked him about his findings. Among other things, he said there was evidence of Somatization Disorder. But I don't think that is it; I think the pain has a physical cause. But if I do have Somatization Disorder, I would think that anyway. How do I determine if that is the problem or not, and if not, how do I make sure my doctors don't dwell on it.

I've been dealing with issues of fatigue for a couple years, and about a year and half ago it started getting bad, and I would occasionally have pain associated with it. The pain started getting worse and more frequent starting summer of 2011, and was really bad and daily fall of 2011. I also have a ton of other symptoms, insomnia, restless leg syndrom, dry hair, daytime sleepiness, IBS, horrible, painful acne, brain fog etc . . . Many tests have been done, and no answer found. But they have found some things, like low potassium periodically, blood in my urine with no cause, low vitamin d, increased SED rate. But nothing that points to a specific problem. Anyway, I'm giving the short version. I've seen a lot of doctors and no one can say what the problem is. One doctor says fibromyalgia is a strong possibility.

Fast forward to now, referred to a pain clinic where I met with a psychiatrist for evaluation before treatment. After it was done, I asked about his results, and he said possible fibromyalgia with symptoms of fatigue, but there is also evidence of somatization disorder. Now, I can see how he got there, but I don't think somatization disorder is a correct assessment. But, of course I wouldn't think that's the problem, people with somatization disorder don't think that's the problem.

I understand how he came to that conclusion - my father was abusive, and right now, I get depressed easily, especially when think or talking about my illness, largely from frustration about not knowing the cause and being limited in my abilities. My life has been interrupted, I'm not working and I spend a lot of time just hurting. I've had medical issues going back years (though mostly migraine and allergies), and the doctors haven't found a physical problem of the pain and fatigue.

But here is why I doubt somatization disorder - The year leading up to this was a fucking fantastic year. I was having a great year, I was in a good mood, I recently had a promotion at work. I was getting job offers left and right, my hobby was going well and I was getting recognition as an expert in that community. My home life was good, I was feeling good, other than physical symptoms. The abuse from my childhood was the furthest thing on my mind.

. . . But I kept getting more and more tired and more pain.

It's likely I was overextended, but I certainly was enjoying myself. Not that everything was perfect, there were of course ups and downs, but overall it was pretty good and I was feeling pretty good.

Even when this first started, I was still doing okay mentally. I was frustrated at not finding a cause, and frustrated with being unable to do normal daily activities. But I thought I'd get better soon and so overall it started out feeling like it might be a nice little break then I'd get back to things. The pain caused/causes me to be irritable and depressed, but I think it's safe to say that's a pretty normal reaction. It was really only the last few months when it's become apparent that my doctors aren't finding a cause and I probably won't be getting better soon. This strikes me as a perfectly normal reaction.

I genuinely don't think I have a psychological reason that would cause my body to express pain. The abuse stuff is in the past and it doesn't bother me anymore, if anything I've gotten better about dealing with it and telling people in a matter of fact way rather than getting upset about it or hiding it. I also rarely actually think about it, having left that life behind. I only bring it up as my reading on somatization disorder suggests that many people with the disorder dealt with childhood about. And there really isn't anything else going on in my life that would cause psychological distress. Even now, feeling disabled and in pain, I still generally have a positive outlook; I keep in touch with friends, I am trying to work on a few projects as I have the energy. I'm even looking forward to treatment with the pain clinic so I can either learn to adjust to living with this or to get better.

But I would say that if I had somatization disorder, wouldn't I?

I feel it's a bit damned if I do, damned if I don't situation. If I don't have somatization disorder, I won't think I have it. But if I do suffer from somatization disorder I also won't think I have it. In short, if someone has somatization disorder, they'd do the same exact things as someone looking to treat a physical illness.

I guess my question is in short; how do I deal with this? I don't want the doctors treating me as if it's all in my head in lieu of finding a cause or relief and I don't want to be marginalized because it's "all in my head". But I also want to be able to come to terms with it if it is all in my head.

posted by [insert clever name here] to health & fitness (11 answers total)

Can you afford to start treatment with a psychologist or other therapist to explore the possibility that some aspect of your illness may be linked to somatization?

My own autoimmune issues were originally identified as somatization/depression by a primary care physician. At the time, I was already in treatment with a therapist and a psychiatrist for depression, so I went back to them with that information and both of them spent several sessions with me exploring whether that was a possibility. As it turned out, neither of them thought it was at all likely to be the case, but I felt more confident in that after I had explored it in depth with them.

So what worked for me was approaching this suggestion the same way I had approached every other suggestion about possible causes for my chronic illness---to see a specialist (specialists, in my case) and have them do the examinations they felt they needed to rule it in or rule it out. Because this is your psyche, rather than your pancreas, there's a tendency to think you can self-diagnose through introspection, but you just can't. You need a specialist to conduct in-depth inquiry.

An intake exam isn't really enough to base a diagnosis on, let alone a treatment strategy, so I wouldn't take this one psychiatrist's comment too seriously.

Best of luck to you! Chronic illness sucks.
posted by Sidhedevil at 11:23 AM on September 19, 2012 [2 favorites]

I should say that by "treatment" you might be looking at a few sessions or a longer-term commitment, depending on what the outcome of the initial assessment is, so. It's unfortunate that medical systems (at least here in the US and my impression from my Canadian relatives is that it's somewhat similar there) can have less space in terms of funding/eligibility for mental health care than for physical health care.
posted by Sidhedevil at 11:25 AM on September 19, 2012

Yes, I will be continuing to see this therapist as part of my treatment. He did say this was my initial diagnosis, and next time we'd be going over each thing he wrote in his evaluation line by line, so we could talk about them and I could tell him if I thought any were wrong.

Meanwhile I am meeting with another doctor in the pain clinic on monday, who is going to be handling the physical aspects, in part based on this evaluation.
posted by [insert clever name here] at 11:31 AM on September 19, 2012

Ah, good. So something to think about is that psychiatrists absolutely can and do rule out somatization disorder entirely. And if that is his determination, you'll then have that as another piece of information to help complete the puzzle.

Glad that they are moving forward with treating your physical pain instead of waiting for a fuller evaluation of the somatization possibility.
posted by Sidhedevil at 11:34 AM on September 19, 2012

Try this thought experiment:

Imagine you could wave a magic wand and cure all physical symptoms. What about your life would change? Is your answer something like, "Wow! It would be great not to be in pain," or is it something like, "Wow! I would get to do X, Y, and Z and my life would be perfect"?

If it's the first, this could be a sign that your issues are more physiological in nature. If it's the latter, it might be a sign your issues are more psychology. I'm not a doctor or a therapist, but this bit of advice stuck with me for years and found it interesting to think about in different situations where it's unclear if the issue is physiological or psychological.
posted by parakeetdog at 12:01 PM on September 19, 2012 [2 favorites]

I recently had a promotion at work. I was getting job offers left and right, my hobby was going well and I was getting recognition as an expert in that community.

That sounds like it could be pretty stressful. I don't know much about somatization disorder specifically, but I bet that level of stress (even if it is "good" stress) could exacerbate ongoing psychological issues. What I really wanted to say, though, is that if you have a doctor (medical or psychological) who dismisses your pain as "all in your head" and doesn't work constructively with you to find a path to relief from your pain -- even if it is psychologically induced -- you should switch doctors.
posted by Rock Steady at 12:13 PM on September 19, 2012 [1 favorite]

I don't know if this will resonate with you or not (and I freely admit that I'm speaking from a position of privilege as a generally healthy person), but if it *is* "all in your head" that doesn't mean it's any less real. Pain is always just "in your head" if you want to get literal about it - pain, basically, doesn't become pain until your brain processes it. Just because your pain might turn out to have a psychological source rather than a physical source doesn't mean it's any less, it just means the treatment would be different. Or maybe even not that different - many kinds of acute and chronic pain, even injury-related pain, have been shown to respond to CBT and other brain-based approaches.

On the other hand, who knows what your diagnosis is going to turn out to be? When I was a teenager I was briefly misdiagnosed as probably having a psychological tic disorder when in fact I had rheumatic fever, whoops. So work with the psychiatrist and your other doctors and see what happens.
posted by mskyle at 12:35 PM on September 19, 2012 [1 favorite]

Thanks everyone for the responses. And those of you that emailed, I will get back to you shortly.

I guess my concern about it being cause by psychological issues is that I feel generally well adjusted, and I'm afraid that the doctor is going to take current depressed/irritability (which is totally from the pain and from not being able to lead a normal life at the moment) and past issue of abuse and come to the wrong conclusion. Despite coming from a broken home, I feel I escaped and am a stronger person because of it. And even though I came from an abusive home, it wasn't as bad as some; I'm not trying to marginalize it, it is what it is. But I came out the other side okay.

Maybe my worries are premature, and further sessions will either bear out what I'm saying now, or I'll discover I am wrong and it is effecting me.

And yes, the time ramping up to when I got sick was actually pretty stressful, even if in a good way. At first I thought maybe I was just burnt out. Well I didn't really because it had been ramping up for a while, but I thought it was possibly at least part of it.

parakeetdog , that's an interesting question. I think my answer is "wow, it would be great to get back to a normal life because there is so much I want to do." However I have been daydreaming about doing something big, like moving out of state, so it could be either. (Then again, I have wanted to move out of state for a couple years, and being idle has given me time to daydream).

There doesn't seem to be a correlation with stress and pain symptoms. It comes and goes, and seems pretty random. I might be in the middle of a great mood and be shut down quickly because of the pain. There is a correlation between exertion and pain though. The more I do, the worse I feel.
posted by [insert clever name here] at 1:21 PM on September 19, 2012

[insert clever name here]  The pain started getting worse and more frequent starting summer of 2011, and was really bad and daily fall of 2011. I also have a ton of other symptoms, insomnia, restless leg syndrom, dry hair, daytime sleepiness, IBS, horrible, painful acne, brain fog etc . . . Many tests have been done, and no answer found. But they have found some things, like low potassium periodically, blood in my urine with no cause, low vitamin d, increased SED rate. But nothing that points to a specific problem. [...] One doctor says fibromyalgia is a strong possibility.

Are you under the care of a rheumatologist and endocrinologist in addition to whoever's done your previous work-ups (primary care physician?)? Many autoimmune disorders initially present with a constellation of similar, nonspecific symptoms. It can require a well-experienced clinician to connect all the dots. Some of your issues (fatigue/pain, depression, hypokalemia, urinary abnormalities, high sed rate, etc.) reminded me of someone I knew who had Sjogren's syndrome that was not diagnosed until she developed acute thyroiditis.

Fibromyalgia itself is variously classified as somatoform, neuroendocrine, or rheumatic depending on whom you ask, and while it's still mostly a diagnosis of exclusion given when no other explanation for chronic pain and fatigue can be found, it is also associated with several autoimmune and rheumatic diseases.

I'm not a doctor, I don't know how abnormal your test results were or whether you had tests for infection or immune function, and I'm not suggesting a diagnosis, just mentioning the possibility.

Sidhedevil  My own autoimmune issues were originally identified as somatization/depression by a primary care physician. At the time, I was already in treatment with a therapist and a psychiatrist for depression, so I went back to them with that information and both of them spent several sessions with me exploring whether that was a possibility. As it turned out, neither of them thought it was at all likely to be the case, but I felt more confident in that after I had explored it in depth with them.

Yeah. History of childhood abuse is associated with chronic pain in adulthood, somatoform or otherwise. You don't necessarily have to be experiencing current emotional distress for your history to be having an effect on your well-being. However, you are also correct that once somatization or depression is in your record, some physicians will dismiss any further exploration of organic/physical disease causes, even in the face of abnormal test results that ought to have a non-somatoform explanation.

Remind yourself as needed that focusing on symptom and stress management now is universal to both physical and psychological disorders, and is about improving your quality of life, not about barring you from investigating other causes now or later. You read as pretty open and confident, which suggests that if you need to, you will — and should — be able to keep the doors open to other explanations.
posted by hat at 6:28 PM on September 19, 2012

Look, it's impossible to tell what part of your suffering comes from purely physical origin and what part comes from mental reaction to real physical origin. I don't actually believe in a "purely" physical or mental cause. As someone who's suffered from chronic pain and recovered from it, I couldn't begin to pick it all apart, it's so intertwined.

What I've learned, though, is that the mind is a critical tool in managing the pain. Just as you can imagine yourself creating a downward spiral, where you inflate a bad incident into a bad day, for instance; you can create an upward spiral, where you manage your reaction to pain in such a way as to reduce it.

If the diagnosis of Somatization means they teach you how to do that? More power to you. I'd say it's worth the relatively minor stigma. In short: focus on what positive ways you can benefit from the diagnosis, even if it makes you swallow your pride.

And good luck -- nobody deserves to hurt constantly. I wish you all the best for a speedy recovery.
posted by nadise at 10:47 PM on September 19, 2012

Mail me. I think I can help, maybe.
posted by jitterbug perfume at 11:15 AM on September 27, 2012