Hi and hmph.

[Demonizer]

I wish I could've turned this post into a walloping praise about how much I learned about psychology from lurking here, or at the very least, how far it's taken me from the belief that it was just a pseudo-science... I also wish I wouldn't have to write this at 1 AM, in the sixth month of a struggle that ought to have started and finished many years ago. The truth is that right now, problems seem to be piling up on top of me. I've been trying to unravel the most serious issue - a clutch of neurological and other symptoms - before receiving a half-hearted diagnosis from a general practicioner. She thinks I have conversion disorder.

Thanks to one of my other problems, I can't afford to visit a psychiatrist right now, so it looks as if I'll have to treat myself. I found no information on the disease, but I was hoping someone here would know... How can I cure this (if I'm realy suffering from conversion disorder) without expert assistance, and without medication? I understand that stress, or rather, stressful conflicts trigger it... This is a problem, as I've had many conflicts in my life, and some appear hardy enough to last my whole life. This might sound strange, but what's the proportion of people who got cured without having to go about "fixing" their lives?

I've got my baccalaureate exams coming, and several of my symptoms have kept me from preparing for them. I doubt the exams are a source of stress, but I can't seem to get myself to read the schoolbooks anymore! I rarely get more than half an hour's worth of studying before the symptoms reappear and force me to quit. My gamer's addiction came back to me while my true love -interactive fiction- kept withering away in dusty, unused text documents... There's a three-year-old project I kept working on until last winter, and I had to quit it because of the disease. Needless to say, ick!

 

[David Baxter PhD]

I've been trying to unravel the most serious issue - a clutch of neurological and other symptoms - before receiving a half-hearted diagnosis from a general practicioner. She thinks I have conversion disorder.

Thanks to one of my other problems, I can't afford to visit a psychiatrist right now, so it looks as if I'll have to treat myself. I found no information on the disease, but I was hoping someone here would know... How can I cure this (if I'm realy suffering from conversion disorder) without expert assistance, and without medication?

Hi, Demonizer:

First, before we talk about what may or may not be necessary to help you, we need to know what symptoms you are experiencing, what diagnositic tests you have completed, and what treatment has been tried to date. I mean no disprespect to your general practitioner, but she may not have the necessary background to diagnose a "psychiatric" disorder, and from the little information you've provided in your post I would not even attempt it.

Second, while I understand the reluctance of many people to take medication, I would also suggest that, whatever symptoms you are experiencing, you should not rule it out. Some conditions are virtually impossible to manage without medication, although in most cases medication is not the complete solution.

Basically, I think you'll need to provide a bit more information as to your symptoms and history before I would be comfortable commenting.

 

[Demonizer]

Thanks. My general practicioner actually called it Chronic Fatigue Syndrome, which proves she doesn't know that much about systemic diseases. I'll be visiting a neurologist next tuesday, and probably a rheumatologist later on.

I've got quite a list of symptoms. These sometimes happen independently of each other:
-Paresthesia: prickling, heat, numbness
-Blood vessels throbbing violently (often in tone with my pulse), jerking or swelling (and remaining swollen for a few minutes). This is especially felt in my legs (and there, especially in my ankles), rarely ever happens in my abdomen or chest, but may appear in such exotic places as my nose, lips and the back of my eyes
-Arrythmia, painless or slightly painful palpitations
-rhythmical back-and-forth movements in one or more parts of my body. They all have roughly the same frequency as my cardiac rhythm, though most feel slower.
-an unrelenting pain slightly above my heart
-Blushing and/or a warm sensation in my cheeks
-sweating and/or fever
-dry mouth (this may be due to the occasional cold, though)
-sensations that resemble needles pinching on my body. It shows up in a lot of random places, usually while I'm wearing warm clothes.
-speech defects. My tongue just tends to skip past letters when I try talking a bit too fast. It's worth mentioning that I don't always get this problem.

These tend to provide an entourage for the main problems:
-nausea
-dizzyness
-fatigue, sometimes so powerful that I can barely do anything.
-a need to take several deep breaths. It doesn't seem to matter if I do take them or not.
-lethargy, in the sense that my typing and other motions become slow.
-double vision, especially when I start daydreaming (in other words, when I don't keep a tight grip on my muscles)
-poor ability to read
-ringing in one or both of my ears

These usually manifest jointly:
-a dramatic loss of tonus. My head and limbs may slip (in the worst cases, I find myself having to consciously control them just to keep them straight). I sometimes drop things from my hands for no reason.
-a vague feeling of discomfort, buzzing and swelling, all occouring on my face
-my head might veer forward or to the side until some muscles in my neck are fully contracted
-a tension headeache or migraine (my temples suffer most from this)
-a strange sensation, like a blow to the back of my head. It might be so slight that I barely feel it. It's unlike my other headeaches because it always feels like it's coming from without.
-I can't remember what I had done a few moments before, or pretty much anything (sometimes even if I strain myself)
-I think far more slowly than normal, or not at all (in some cases, I simply lose consciousness for a few moments, while still being able to see and hear perfectly. I'm not sure if this can be considered a stroke or not.)
-a loss of balance, either on one or both sides (for instance, I find myself wobbling or sliding back if I stand upright and press my whole weight on my right foot)
-poor coordination of movement, which leads to things like running into walls (and people) and dragging my feet along the ground.
-slight depression - an "I shouldn't bother" attitude. I don't blame myself for it, but it does tend to carry on after I recover
-eye clonus of some kind. It sometimes occours only in one eye, and can be slight.

These are always in effect:
-a high number of floaters in my eyes
-short-sightedness
-"spikes" or beams of light emerging out of bright lights, together with halos or concentric "tree rings" (resembling the age marks on a stump). The "tree rings" go away when I blink.
-my tongue's upper surface is pinkish-white, except for a few dark-red blotches at its back.
-my nails can break somewhat easily and tend to split into thinner sheets at their edges (this might be because I bite them a lot)
-I drink more than two liters of water every day (I might be doing this to go against my soft drink addiction)
-my pulse and blood pressure are very prone to change: they range all the way from the average minimum to the average maximum.
-recently, I also noted indigestion - some of what I eat usually floats back up as gas.

Note that I wrote about these symptoms last month, after having studied various diseases on the net. From early january, I also remember things like jolts of pain, shaped a bit like lighting bolts, pulsing through my skull on a few occasions - presumably, they were blood vessels acting up.

I'm not sure how this will help, but the only blood test I had showed high IgA (469 mg/dl, with 348 being the maximum "average"), low WBC, high RBC as well as a slightly low MCV, very high PDW, very low PCT and abnormal white cell percentages and counts. I can post the full results if you want them. Blood glucose was average, as were the thyroid hormones, rheumatoid factor, IgE and IgG. I didn't take a potassium, calcium ion or ANA test, or homocysteine & methylmalonic acid, or Antigliadin Antibody. Can something like conversion disorder leave biochemical traces in the bloodstream?

CT came back normal, though that doesn't really say much. Standard clinical diagnostic tests didn't show anything out of the ordinary. I haven't had an MRI, nor do I believe I will. I may do a spinal tap eventually, if it turns out I don't have conversion disorder.

I don't smoke, I avoid alcohol, though I have been drinking soft drinks almost exclusively in the last few years. Right now, I don't touch anything besides mineral water. While I don't have a model lifestyle, I doubt that could cause my symptoms.

Is this enough?

 

[momof5]

Hi Demonizer.

I have to say I totally understand how you are feeling right now. I have tons of things that have been diagnosed with me as well.

I have fibromyalgia, which is sort of simliar to cfs. And you can have both at the same time. Along with other things that can and sometimes do go along with the symptoms that you are describing. ( I also thought that the drs didn't know what they were talking about, even the reumo and spine specialists that I had seen)

I have many of the symptoms that you explain as well as others. (Mine was caused by injuries to my spine, I have a total of 8-9 herinated and buldging discs, injuries to both sholders, left hip and right knee.)

And yes, stress does increase the symptoms.

I also understand how you feel in regards to the medicaitons. In the begining I would not even take pain meds. Finally I had to in order to function.

I spent a long time fighting the diagnosis of fibromyaliga, raynauds phenm, myofascial pain syndrome and pheriperal nerve disease, in addition to the injuries that I had. I was SOOOOOOO angry at the world for a while. My life was so different, and how was I going to adjust to this?

Please feel free to vent, I'll listen to you. I'm sure that everyone else here will as well.

 

[David Baxter PhD]

It seems to me the neurology consultation is an important one here, although it may not answer your questions definitively.

It's one of those "Occam's Razor" issues: the simplest explanation ios probably the correct one, or in this context, don't assume a more complex or less likely explanation (i.e., diagnosis) until you have ruled out the more obvious/likely ones.

As an example, anyone showing symptoms of depression or hypomania or even schizophrenia should always be tested for thyroid functioning to rule that out as a cause... don't assume a purely psychological basis (as in conversion disorder) until you have ruled out possible physical bases.

As for your particular combination of symptoms, that is a very long list indeed and I can only imagine your level of frustration with the medical profession. I would strongly advise you to visit the Fibromyalgia Friends and Family Forum - a forum/support group for people and their families
diagnosed with fibromyalgia (FMS) and chronic fatigue syndrome (CFS) and related syndromes - I think you may find a lot of useful information and advice there.

 

[momof5]

It seems to me the neurology consultation is an important one here, although it may not answer your questions definitively.

David is correct on this one here.

One thing they are going to do is a ton of blood work, and tests. Unfortunatly for those of us diagnoised with fms and cfs, they are called diseases of exculsion. Anyhow, what it means is that all other things need to be ruled out first before the diagnois is made on these two things. Even though there are signs that you have these diseases, or illnesses, most of the medical commuinty think that there isn't enough substancial evidiance in the way of testing for them. So they do a barage of testing to rule out other things. Then go with the physical testing for these other ones.

I do understand how you feel. I wish I could reach out and give you a giant hug right now. Visit the forum that David mentioned. Also keep in contact here as well. Aside from all else, what you are going to need is lots of support right now. You will find it in here as well as the one that David mentioned.

 

[Demonizer]

I never really understood why people look for emotional support, or why they're relieved to hear they're not alone in their suffering... I've always thought of this condition as something that I had to act on. Even when the only thing I did was wait and promise myself to end it, I was glad to feel wretched, simply because it meant recognizing my disease and wanting to oppose it.

It's good to hear most of my symptoms can be organic, but I'm curious... Do you ever get the pulsing blood, jerking vessels? I couldn't find this symptom in any "portfolio", even though I've looked through dozens of diseases. Maybe there's a technical term for it that I just missed, or maybe one of my symptoms is causing it.

I wouldn't mind the fatigue, pain and everything else if I was left without the cognitive problems. I'm not worried about taking medications to correct them, but the death toll due to medications in the US does frighten me a little. You say you had to change your lifestyle - does that mean you had to avoid hard mental labor? For me, that would feel like the end of my life.

Anyway, give lots of hugs to your computer screen... I do that whenever someone passes me a cyberhug, and it feels a whole lot better than staring at a pair of brackets.

 

[momof5]

Hi Demonizer.
I guess my lifestyle changes are due to the back injuries. I no longer can play basketball with my kids or things of that nature. I used to love to dance. That is not an option for me anymore. I can slow dance with my husband, but that is about as fast of a dance as it gets for me. I used to do craft shows. I made wood products, candles floral arrangements and some jewlery items, I did acid etching on glass and some glass engraving. Now though, I can't lift the boxes to do shows. Its been 5 years since I have done a show. I have yet to get rid of my stock though as I think maybe one day......

In the begining the mental fatique was really bad. But I think a good bit of that was medication caused for a while, as well as from the fms. But you learn how to pace yourself. If you get so tired that you cant think, then learn how to work your day with some rest peroids in there to get you through.

I dont' have a problem with my blood vessels, however I do have muscle spasams (sp?).

I think that in a way this has made me a better person. I have learned that I have an inner strength to succeed at things. Soemthing that I dont' think I would have learned about myself if not for all of these things in my life. I was a fighter as it was, but in a different way. Now, I look at things different. I am working on learning web design. It is taking me a while as I am teaching myself, but in the long run, its going to be great.

Thanks for the hug back through the computer ;>) And don't forget we are here, and support is a really good thing.

 

[Demonizer]

Because of what might have been youthful folly, or perhaps far too much confidence in medicine, I strode into a psychiatrist's office. I had been skeptical from the beginning, and as soon as I left, I saw my skepticism for what it had become: a pristine hatred of the psychiatric profession. She was, in fact, a "neuropsychiatrist", which seems to have meant nothing in the end... She, like her predecessor, thought Chronic Fatigue Syndrome was psychiatric.

She also thought I was a hypochondriac... Apparently from the beginning. How she made fun of me and wretched her reassuring lies onto my scowl, I won't describe here. What I will say is that she made no effort to cooperate with me, despite my queries... Even her first, cheerful words disguised an intent to "uncover" my psychology - she told me I was smart, something that she repeated when it became clear she took me for a hypochondriac. It seems that she had been tipped off by the GP. What she did say, after concluding a clinical trial where she tested reflexes and gait, that I didn't have the face or clinical symptoms to suggest any disease. I used to think it was impossible to rule out most diseases with a simple clinical test, and I still do... In fact, I would love to see the full list of diseases that a standard clinical test can refute.

Long ago, in a brief moment of idleness, I scribbled a caricature of the psychiatrist in my head. Well, this woman was a perfect fit. The whole thing left me feeling violated and humiliated - halfway through it, when I was asked why I didn't bring a parent along, I mentioned in a fit of rage that my mother was mentally ill (a grim truth, and one of the reasons why I wasn't able to get a good diagnosis yet). This made her doubt my intelligence, and suddenly exchanged "smart" with "sad". The way to treat my illness, she soon said, was to get into college, find a job...

The mockery, however thick, was something I can live with. What scares me most is that she offered to give me a consultation with a "real" neurologist the next morning, and asked me to bring a parent along. If she mentions this to my father, who thinks (by virtue of my listening to rock music) that I'm mentally ill, I'll be left without any hope of finding a cure within a reasonable timeframe. While I only left my cellphone number to the front desk, I'm frightened... Might she decide to call my father? Or will she think that I've been cured by refusing to go? I must confess, he's somewhat famous in my country, though I can't tell whether she knows who I am. She did make a remark at the beginning, asking me if I belonged to an artist family she knew about (my father's a politician), but later on mentioned that I was poor (a conclusion she might have drawn on my reluctance to take expensive tests). She might have lied about it, I suppose.

I hope you never diagnosed hypochondriasis, mr. Baxter... There's nothing quite like being told you're insane, in the kindest words, after a dismissive glance at your physical health.

 

[momof5]

Demonizer, my heart goes out to you right now. More then I think you could possibly know.

In a different way, I have went through these same things with the neurologists that I have seen.

As well as independant medical evaluators for the "other side". I had to see a psychiatrist for both parts, our side and their side. My side said I was extremly depressed. Their side said I was not depressed and any pain and chronic pain situations that I am in are from prevous chronic pain situations?! Now, there are no other chronic pain situations previous to this. Go figure right?

The neuroligsts, well thats another story. The first one I had seen about 5 years ago said I needed surgery, however, the one that he recomended was not for someone with spinal stenosis. So I didn't go with it. He did state that unless I have surgery things would get worse. BUT did he write that in my records? NO because he was a workers comp dr. All other neuros don't think I need anythign done. However the two drs that I have seen since my injuries say I need surgery, in fact an eventual hip replacement and knee replacement. I figure they know the most since they have seen me since the begining and have ordered what tests I have had done.

I had even seen a neuro that didn't believe in fibromyalgia! My dr was sooooo mad when I told him what he stated. He could not believe that a neuro that was fairly young did not believe in fms. Needless to say I didn't return to him again.

It is not easy to find drs that can treat fms cfs etc... Its a good idea to check in your area for groups that might be able to refer you to one. Or go online to their National dr directories. When I was refered to a reumie, that is how I found them. Through the national fms association.

I don't think that you are a hypochondriac. Please check out fibromyalgia family and friends. Look through the information that is in there. There is tons of it for all sorts of things. There are also a few people in there that are most of the time online checking things out to see if there are any questions and if they can help out. Also I would find a new dr, a new family dr as well.

Take care of yourself. And keep checking in here. I was wondering how you were doing.