Caution - how pain and subjective symptoms are explained in DSM IV. Advice accompanied by venting

[Guest guest]

Recently I perused the " psych Bible " as I and others loosely refer to the DSM IV

and was very disturbed to see changes made in the last edition which deal with

somatic concerns, somatization, etc (see my prev email to AJ about the hell I

was subjected to when accused of this problem when I didn't have it). My problem

was in 1997 and for Somatization disorder there was a very specific list of

symptoms and you had to have, I think it was 7 of these symptoms not explained

by any other medical condition. This no longer exists but literally any symptom

for which there is not an objective diagnostic test is in that section, in its

place. On the list are things like chronic pain, headaches, soft tissue pain,

fatigue, etc. It was a very long list. I was absolutely shocked. How many of us

with EDS and the general population have headaches but nothing we could have a

test for to prove we have it. It is scary to think someone with persistent

headaches who sees a doctor could be labelled as having a pscyh disorder! I

expect most doctors know better than this but from what I have seen on this

listserv over the past few years, there are certainly some docs, unfortunately,

who don't seem to. Reading tihs section was like " psychiatry gone mad " . The

following is just general advice and food for thought.I think it is an important

topic for anyone who has a syndrome, CFS, Fibro, anything for which you can't

just have lab tests or xrays done that will support what you are saying you are

experiencing.

Anyway, I mention this as a word of warning and a recommendation for making sure

you have at least one doctor involved who understands your EDS and isn't apt to

venture into psych LALA land. Anyway, there was a long list including chronic

pain and essentially ANY symptom that could exist without a diagnostic test to

back it up and it would fall under one of these somatization type diagnoses! As

many of us with EDS know, a lot of what we go through every day won't show up on

an xray, blood work, etc. A lot of problems are funcitonal (like my GI problems

or my shoulder which falls out every time I move but when put in a neutral

position for xrays, looks normal). I think this is part of the reason, why when

one of us hits a doctor who is not capable of thinking in terms of what EDS

produces, it is so easy to play the psych card. I guess to me, this is where the

art of medicine comes in more than the science.

And some doctors, often surgeons and psychiatrists literally believe if there

isn't an objective diagnostic test that will show the problem, then it must be a

sign of a psychiatric disorder. I recentlyi had an orthopod I had never seen

before claim I showed no signs of EDS (of course, if you have no clue what

you're looking at....), that I should come off my narcotic medications and see a

psychiatrist! He didn't even have the guts to say it to my face or I surely

would have made mincemeat of him. Sinec he never asked what the narcotics were

for, he wrongly assumed it was for my neck not my lower back (which thankfully

showsproblems on xrays). So, time for another complaint. I thought I had made

major headway getting through to people here, but can't explain this ignoramus.

Additionally, there has been a pain doctor involved since 1998 so I expect that

person would know better than this fool about my pain management. There is no

psychiatrist involved sinec after seeing a couple, they felt I other than

depression and anxiety (gee, I wonder why I would be depressed and anxious...)

there is nothing else there. 3 geneticists have diagnosed the EDS. Of course, if

he had asked, he would have been supplied with the information. What bothers me

the most is when people have other doctors, some of whom have put YEARS of

effort into helping you are assumed to be wrong and the fool who sees you 15

minutes, doesn't look at your chart, makes assumptions, and doesn't get it

thinks he is the one shining light and all these other doctors must be wrong.

Yeah, right... It isn't just the patient being discounted, to me it is every

other professional involved in your care. As for the neck, when my pain doc

attempted a block on it, it reproduced then eliminated the symptoms - I had

occipital neuralgia. Gee, imagine that - a REAL physical problem. As I say in

the ocmplaint - I would be very concerned if a neck surgeon wasn't capable of

diagnosing occipital neuralgia. I must say, I will take some devious delight in

finishing and sending this complaint. I have lots of stuff from my chart so even

if I don't get too far with it (the ol boys club of docs sticking up for each

other, sadly still is alive and well) he will have to look at it and think about

it. I don't think it is a coincidence that at least 8 orthopedic surgeons who I

was sent to at various times from age 3 to 29 missed the diagnosis of EDS.

Getting labelled with something you don't have can cause a lot of future

problems so if you know what you are going through is not in your head (since

too many people with conditions like CFS, Fibro and EDS and others seem to get

accused of this), then better to get away from any doctor who exhibits this line

of thinking. You can talk and rationalize til you're blue in the face and not be

able to get throiugh to these docs. Some see it as you being in denial or

talking you way out of things which they further would claim is proof of a psych

problem. My best advice, from someone falsely accused, is to get out of any

relationships where this is happening, has happened or you are concerned about.

We all deserve doctors who will move us ahead and contribute something positive.

Afterall, if everyone with these conditions did have a psychosomatic problem, we

would essentially have an epidemic, which of course we don't. I personally

believe very few people have these conditions and that labelling a patient as

such is the ultimate diagnostic cop out. This latest DSM IV makes it too easy to

do this. Anyone I know who has any of these conditions, led active, enjoyable

lives and now can't. They have nothing to gain and everything to lose by having

health problems.

I thought I would mention this because I do see people having repeated problems

with doctors not only not understanding EDS, but taking it a step further and

possibly harming the patient by labelling them with a psych diagnosis which

could seriously harm a person's future care, insurance and disability coverage

and income. It is frustrating that when you feel the worst you have to stand up

and fight the most.

Joyce