Psychotic One / Somatization Disorder

[ELT]

First off, thank you to all who spoke up for me the other day.  I needed a little reassurance.

In the doctors (pleural - my gp was told by the docs who work for the insurace company) defense, I have no sign, really, of organic disease.  In order to explain my difficulties, they came up with somatization disorder.  

I spent yesterday researching somatization disorder, all over the world wide web.  I then RE-researched the neuropathic pain which brought me to them.  You know?  The ones I didn't know existed when I went to the doctor to ask what was up.  

I've been treated for neuropathic pain for three years.  Trigeminal neuralgia and severe rib discomfort and pain (like I'm being vacuum sealed from the inside).  Never mind all the other itchy/creepy crawly/burning/tingling/buzzing/vibrating/etc., that goes on.  My neuro gave me gabapentin, when my dose got too high with no results, my gp switched me to lyrica.

For a variety of reasons, I've not been on meds for a bit.  I noticed another neuropathy.  A burning pain in my outer thighs, from my hips to my knees.  It actually is a number of different sensations.  It also sometimes hits my glutes and my groin.  I went to my gp a few months ago to ask him about it.  He said I was fine, keep exercising.  From what I read of somatization disorder, this is how to treat the patient.  Reassure them that their pain is there, but normal.  Ignore it, it will go away.  I now know this to be meralgia paresthetica.  

I understand how they came to the conclusion I have somatization disorder, I don't agree to it.  From the list of symptoms, I fit only the four or five which tie in with ms.  The list is about 40 symptoms long.  I don't have the other underlying causative issues either.  None of it fits.  I've studied it to death.  I certainly don't fit the canadian legal definition, my claim would be at stake.  

My main, most burning truth, though, is this.  I had no idea where certain nerve things went, what was where, who did what.  I didn't own a computer, I'd never even been on the world wide web.  So, how, and why, without being stressed, upset, depressed, did I suddenly come up with neuropathic pain, fairly specific for ms?  At first they told me I had an allergic reaction.  When it didn't respond to the med being stopped, but DID respond to gabapentin, well, what can I say?  

How could I convince my brain to convince my body to get bilateral trigeminal neuralgia, the ms hug and bilateral meralgia paresthetica?  I didn't know these things existed until AFTER I was treated for them.  Long after.  And why?  Things were (and still are, other than being sick) great in my life.  What did all this happen for?  

I don't get nauseated, I'm not headachy, I'm not depressed, anxious, I'm not short of breath, I have no palpitations, no joint or back pain, no diarrhea, no painful urination, no chest pain, no sexual apathy, no pain during intercourse, no impotence, no menstrual problems.  These are some of the signs of somatization disorder.  The only ones I DO have are, pain in the arms and legs, SOMEtimes difficulty swallowing (not often, thank goodness), vision changes  and muscle weakness.

Fortunately for the doctors, they don't need any phsycial evidence of somatization disorder.  They need a lack of it.  Too bad it wasn't the other way around, LOL.  No, I don't want MS.  Neither am I terrified of it.  I just want REAL answers for what's up with my body, so I can make practical decisions.  

Again, in the doctors defence, he has been told that he needs to minimize any 'symptoms' I come to him with, as this will make my 'somatization disorder' better.  I don't do myself favours by asking him what the pain is I'm feeling now.  Or when I tell him I've been getting progressively weaker again.  I only reinforce the diagnosis.  So, I will not go to him with anything else.  I will let him continue to treat me as a somatizing patient.  It can't hurt me, right?  He's not doing anything to me.  I will continue with my neuro who has told me it is NOT all in my head.  Whether or not my gp likes me to.  

I did find a cool site describing, in depth, the trigeminal nerve.  I even saw images of cadavers, it was a university teaching site.  It showed where the nerve went, what it did where, what things felt like, how the whole anatomy of the face was, really, regarding the nerve structures.  It really was interesting though.  Lots of info.

Again thanks, I feel much more secure in my own beliefs.  Not just because of what I found, but, also because I am not alone in all this.  There are far more of us who wait for answers than there are those who get them quickly.  Perhaps another life altering lesson?  Here's hoping I make good use of the lesson, LOL.

Erica

[fairymaid]

I have to write to the thread.

I have been given somatisation diagnosis from neurologist (only found out because I needed my medical records)
I looked it up and thought whaaaat !! That is unbelievable!

I like many was healthy well pretty healthy apart pregnancy problems
He also diagnosed Bhms/eds and that the discs which he refered to as 'small' which clearly states in black n white mod to large and I have 2 press ion on spinal cord causing compression on nerves , I did not ask to end up in neurologist office or Rheumotolgy and so on or see neuro surgeon .
I was told I could not be operated on as it would 90% kill or paralyze me (shock to start with)
So to live with aches & pains.
I never spoke much as not sure what to say !
I had lots of symptoms and still do!
He refered to the numbness & tingling & pain as 'I think' I had these ??? I never even said that I do had sinc feb 2011 since my neck went.
I have lots of symptoms but there were comments saying how I scoured the internet ???? I only look on internet when a dr gives me something so I can understand it!! I think he was having a bad day because he snapped at my husband looking down his glasses at him rudely .

I went back to my Go and said I want 2nd opinion as he even got wrong that it was my grandad who suffered tumours and not my mother '! So was he actually listening.

I look back the past 25 yrs and I had ebv virus rare form glandular fever and other things. Was in hospital for months.
I had illnesses in each of my 4 children's pregnancys .

All I wanted to know was , what was causing symptoms so when neck MRI confirmed I was happy but no the dr's had to kp passing me around. They also said I have neuropathic pain ,
I got symptoms every wk then was laid up every month the em weakness & fatigue is tough and the Trigamel neuralgia , there's tons of stuff inc the mild Tinitus so why have alllll these things diagnosed if there is no pain there ??? (Somatisation is for them to think we believe they believe we have pain) so what do they think!

I noticed I been treated differently too they don't jump to give me an appointment or talk to me like am gold . I was just a patient then it changed going through tests then after neurologist visit it changed may be that is too much .

I believed and trusted the gp surgery and now I not sure what I think ohh and they said I seek different gp (whaaaat our surgery has 4 gps & you see who ever is given to you)!! So that's upsetting . They have made me low now xx

I never heard or knew of MS, Fibro until the dr gave that name to me , never explained so I HAD TO LOOK MYSELF xx

[Lulu54]

Hi Sheila,
you may not have noticed that you posted on a fairly old thread -  nonetheless, it is a good conversation that we have here quite often.

You may be interested i nthis health page about conversion disorder.....

http://www.medhelp.org/health_pages/Multiple-Sclerosis/So-they-think-youve-got-conversion-disorder/show/1137?cid=36

be well,
Lulu

[Shiela747]

I was told the same thing. Our bio is almost exactly the same.

It's very frustrating but you seem to have a really good attitude about it. Thank you for posting. Others of us can use this encouragement.  Personally I feel that the 'somatization' diagnosis is a cop out because they just can't find problem. I wonder how many people were treated psychologically before more was learned about other diseases. One thing of learned is that most doctors seem to be doing the best they can but they are not capable of knowing everything. I'm trying to be patient.

In the meantime, it is what it is and we just have to plow through life the best we can without treatment. Please know that you are not alone. Others of us are in the same boat.

[Nerve_Wrecked]

Ok, this may be a silly question, but have you been for a psych evaluation?

My experience with a psych evaluation is that it reinforced to my doc (who believed I was mentally well, but wanted to be absolutely sure) that there was no underlying mental illness causing my symptoms.

I have found the fact that I have been for a psychiatric evaluation to be EXTREMELY helpful in how doctors listen to me, and treat me. I've been cleared of mental illness, except maybe some minor depression or anxiety, that the psychiatrist said I didn't need treatment for if I didn't want it. Am I mildly depressed or anxious? Heck yeah! I've been sick for 2.5 years with no known cause!! I'm only treated right now, for nerve pain, on Neurontin, so I still have chonic pain in the form of muscle spasms, weakness in hands and arms, fatigue, and lots of other symptoms that interrupt my daily life, so yeah, for sure there's some mild anxiety/depression.

BUT, that being said, the psychiatrist that I saw (a major pill pusher, who apparently diagnoses people as Bi-Polar A LOT) told me he could find no psychological reason for my pain, and that he felt the cause must be physical, and that I didn't need anti-depressants to treat me. It was very liberating to hear that.

I wonder, if you haven't been to a psychiatrist, what one would say in terms of your mental health, and you somotization disorder.

I'm sorry you're going through this. I can't imagine how awful it must be to be undermined at every turn!

Christine
(un-dx)

[jensequitur]

Keep at it - whatever's causing the problem, it's there.   Your GP and your neurologist should treat the problem, and then you can decide what the cause is later.

You know, I hear stories like this all the time - people that have definite symptoms, but get labeled as hypochondriacs by their doctors.  It makes me wonder about my grandmother, who complained of pain and weakness all her life.  We all thought she was a hypochondriac, because they could never find a reason for her problems.  Now that I have MS, I wonder whether she had it too, but was never diagnosed.

[Deb61]

Boy, a boy you've had a rough time of things.  From your epilepsy doctor cutting you off  like a little girl, to the insurance company making you feel inept, to your close-minded h*ll-bent GP.  

Life does throw curve balls!  My sister was told that it was in her head and I was told it was in my head, and there's countless others with MS and other difficult-to-diagnosis problems that I'm sure have been told the same thing.

When someone finally tells you what the problem is, there's a huge a relief.  My neuro even made that moment better when he told me, "I guess it really was in your head," after he looked at my MRI (he really cracks me up!).  He had said the same thing to my sister a year or so before me.  Both of us didn't have very impressionable MRI's to begin with, but now, they're looking messy.  We also had doctors either refer us for psychiatric evaluations or give us a bogus diagnosis--both of us!!!  

My sister and I now have permament problems that in my opinion, could have been prevented with the proper treatment.  

I think things like this do happen for a reason.  I think perhaps I've experience what I've gone through just so that I can help others, like yourself, with a morsel of support and encouragement.  I've been through h*ll and I think that the worst I've experienced is when no one believed me or took things seriously.  

You hang in there, your doctors just haven't found out what the problem is yet!

Deb

[ELT]

HAHAHA  I missed that, 'til you pointed it out.  I READ it as don't.  YOU brought your error to my attention.  LOL

You also give good advice.  I am usually well prepared for doctor's visits.  After the insurance company sent me to everyone, I became less inept and ill prepared when sitting my backside down in their little rooms.  

I had my mum in with me, though I hadn't planned on it when I saw an epilepsy guy about my seizures.  She embellished things she didn't understand, and he misinterpreted what she meant.  When I tried to fix what she said, he cut me off and told me to let her speak.  She inadvertently misinformed him.  He didn't listen to me.  

OOOOH GODDD, I sound like a somatizing patient.  LOL  Unfortunately, hard not to.  

My bf has been in to speak to my neuro, he did okay.  

I do better without too many other things disrupting me when I'm trying to concentrate and not forget stuff.  I will spend time before hand (not right now, though, LOL) and type out what I have to say.  Then I'll shorten it.  And again.  'Til I have only the pertinent stuff on my sheet.  I will take the articles I wish to cite.  

And, you are all correct.  I won't go to my gp unless I need meds, or, sigh, as in right now, my insurance form filled out.  He will have 'cooled down' as he put it, by next week, and I will smile and ask him nicely to please fill in my somatization form.  

Ah, well.  One day, everything will be understood.  There are reasons to be seen in all things.  Sometimes many reasons.  All I know is, life hasn't yet thrown anything at me that I haven't been able to deal with.  I can adapt.

One good thing of this so far.  I bought, and figured out how to use, a computer.  And the internet.  LOL  I was pretty well illiterate in that sense until after may of '06.  

;) ;)

Erica

[Deb61]

I meant to say in second paragraph, " . . .DON'T spend any time in his office trying to defeat what your GP is saying . . ."

LOL
:)

[Deb61]

I wouldn't see that doctor at all--it's a waste of time and money.  I do think he's causing some harm, here.  He's making you feel worse than you already feel, he's getting in the way of finding out what's wrong, and making you doubt yourself.  

Do see your neuro, but spend any time in his office trying to defeat what your GP is saying.  This time should be spent trying to find REAL answers.  

Take your bf with you, like others have suggested.  Advise him on when you want him to speak up and what to say when, when you loose your focus or forget something.  My sister, husband, or mother goes with me to EVERY appointment.  I always forget to mention very important details and questions.  They are wonderful advocates for me and back up my story.  They also bring up details that I haven't noticed about my cognitive abilities or mobility problems.  I've also down-play my symptoms (like my vision problems) and they highlight these problems for me.  

I can't say enough about having an advocate.  If you don't think your bf is a good person to get, try a family member or a friend, or even better yet, another person with MS!!!!!

Sweetie, don't doubt yourself.  Somatization may look like a logical explanation on paper because they can't figure out what's going on, but having gone through similar experiences, I can tell you that it is nothing but a crock of **** !  

Deb

[ELT]

Thank you both for your thoughts.  

I do realize mental illness is a real illness.  And if I thought that was the answer I'd go for it.  I WANT to be me again.  Well, with a few improvements, maybe, LOL.  I am only upset that he is so quick to dismiss everything I have to say.  I resent everything being labeled somatization by him.

And I do realize it is unconcious.  I had no stress, no upset, nothing wrong in my life.  Things were going well for me, I was phsyically fit, I had almost finished paying for my own house, MYSELF ( I borrowed the last $5,000 from my mum when work put me on disability).  I was jogging to work, with all my supplies for the day in a backpack, 'cause I liked it, not because I was late for work.  LOL  My daughter lived with me, not her twit father, and she was happy and healthy.  I was in a relatively new relationship which was going quite well, and still is.  My pets were fun.  There really was no reason for my brain and body to become ill.  

I find things quite hard now, but, I do them.  I do not sit at home, usually.  I have joined groups, which I enjoy.  I pay my way.  And I enjoy my friends and family.  :)  Imagine how much more I would enjoy it if I had more energy and less pain, and more brains?  LOL  I'd also have the energy to put just THAT much more into my exercise classes and fit into a bikini this summer, LOL LOL.  

I WANT to be healthy again, because I'm a stubborn freak who is very self sufficient, and it's sometimes hard being that way, these days, but, it's ever so important for me to do things for myself.  I don't let many people do things for me that I am capable of doing for myself, and I hate when people tell me they think I've done as much as I should, or walked as far as I should, or whatever.  I'm worse than a mule, LOL.

Trust me, I've asked myself, over and over, 'Is it possible?  Can this be?  Do I perhaps have somatization disorder?'  I have spent all of the last couple of days reviewing myself.  I just don't fit the criteria.  And I'd never even heard of ms when I developed my first symptoms, nor had I heard of the others when they appeard, or their connection to ms, that has all been in the last year and a half.  Mostly the last couple of months.  So, how could my body mimic ms so well, and not somatization disorder at all?  

Maybe I'm still questionning, after all, LOL.  I don't know.  I guess I'll just have to settle in again, get comfy again and wait.  And see.

ada, I WILL keep believing in myself, and amo, you weren't rambling, silly, lol.  You made many valid points which I usually keep to, myself.  I got over upset last week at my doc, cause I've been more than tired, it was late afternoon, I didn't like what he said, blah, blah, blah....seee?  Now, I'M rambling, lol.  You made lots of sense.  

Thanks

Erica

[AMO]

dear erica,

this  is good i think, thaat you are educating your self more on both issues.
what i wanted to try to get known, is how real these mental illneses are, and how wthe patient stuggles no less thannn anyone wiwth an 'organic' illness.

Getting the correct dx's so one can be treated according ly is the most important part. To me it would nnot have mattered if    i had menatl illness, i just wanted  to have the corrrect treatment. I feel that alot of people loos  site whene a docotor mentions the possility it could be a mental illness, maybe ebecause the stigma still attached. Even though the knowlege haave come far in the field and in mainsteam, it still is lacking so much. For someone  to have     to feel it  would be 'better' to have a neurological illness as appose to mental because of the 'shame'  stigma attached in society, is completlet disheartinging. Where is our commapssion and accptance in the world?
I think it is comes form lack of educatiing, that people  think someone with mental illness can have such control over it as to just make it go away?

rememebr i have no idea what ails you, and i make no determination here, simply tell everyone what i think i learned from my trials.

when you mention about 'convincing your brain to convince your body'.... rmemeber the sotomizing is compleltey unconcious, soo  it would not be a simple matter of that.
It goes way beyond, and I Am sure youu realize that once reading up on it.

I think it is good you havve been reserching, it may give you some re assurancee and a bit more understanding. Realizing how the doctors approach assessing a patient is a good thing, and with this all seeing how they have come to this conclusing, be it right or wrong.
What is tough though is thee catch 22     side , when and how much to complain????
I rememer how touguh that was, not wanted to 'overdo' my complaints , but enough   to be heard  The internal struggle is stressful.

I made sure when  i met with the psychitrrist,(which i seeked on my own accord because my neuros thought they maybe had to walk on eggshells on approaching the subect??? I don't knw)  she knew when I understood about CD, and so I was able to have a contolled and indepth conversation with her, and even more sso state why I did not believvve that was what I was dealing with..... like you my live was at a very good place.

Ok, I have rambled, and I have no idea if i made sence and clear what I try to say. Just know you are not alone and many of us have walked your shoes.
Just i think you are brave , and truuust that time will make a clearer picture.
keep faith, amo

[spastic]

Keep believing in yourself, it is real what you are going through, they just don't know a name for it or how to test for it.  I am so sorry that they tagged you with the somatization disorder, they should of never of done that honey.  We are here for you.

Love,

Ada