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Fundies and Somatic Symptoms


GeoBQn

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It's been fairly well documented that the parents aren't the easiest to deal with. They've been verbally abusive and belligerent to the hospital workers and DCFS which doesn't help matters. Remember, they're trying to demonstrate to everyone involved that they are not abusive (medically or otherwise). Kind of hard to do when you're screaming and calling someone a Nazi.

There are two sides to every story and the truth is somewhere in the middle. The parents have turned to the media to plead their case, but we're only hearing one side of the story as the hospital/state is legally prevented from speaking. I don't know who is right or wrong. But I do think there is A LOT more to this story than is being reported.

http://abcnews.go.com/Health/parents-si ... gle.com%2F

True, but any CPS worker with an ounce of sense knows that distraught parents worried about an ill child are going to react strongly to their child being taken away. Parents react strongly to removal even when the are admitted physically abusive, neglectful meth freaks who leave their toddlers with known child molesters. I can't even imagine how much more upsetting it would be to believe your child is in desperate need for medical care and is instead being locked up in a psych ward.

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I know a girl diagnosed with conversion disorder who can't walk. She badly wants to and doctors can find no medical explanation for her problem, but still she's stuck in a wheelchair. It might be a psychosomatic illness, but it's as real to the patient as any physical illness.

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True, but any CPS worker with an ounce of sense knows that distraught parents worried about an ill child are going to react strongly to their child being taken away. Parents react strongly to removal even when the are admitted physically abusive, neglectful meth freaks who leave their toddlers with known child molesters. I can't even imagine how much more upsetting it would be to believe your child is in desperate need for medical care and is instead being locked up in a psych ward.

I wonder if that isn't part of the issue. We tend to expect a certain type of parents to react by yelling and calling names, but have a different set of expectations for white, middle-class parents with no history of substance abuse, DV, or mental illness (AFAIK).

Which is not to excuse the parents' behavior...removal and involvement with CPS is stressful and emotional throughout the process, but the parents who are most successful tend to recognize at some point that lashing out at the workers isn't going to get them anywhere or improve the situation. If anything, it may make it worse. As Maxine Grey on Judging Amy said, "don't threaten the social worker. It doesn't look good on the report."

Also, I think it's important to note that the last 7 months Justina spent in the psych hospital were because a suitable placement couldn't be found - all the appropriate facilities didn't want to take her due to concerns that the parents would sue.

full disclosure: I'm a CPS worker in another state, so I am a tad biased. Families can always take their case to the media, where CPS can't really rebut or respond.

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I was sick for three years in high school with lots of random symptoms and I did have some real issues with my sinuses which didn't help. I had lots of and lots of tests and all they ever found was a cyst in one of my sinuses and some bacteria in my blood that is usually only found on your skin. My junior year in HS I started seeing a therapist taking an SSRI and spending as much time away from my parents as possible and I finally started to feel better. The doctors, we went to an office where you saw someone new each time, I was seeing at the time never even hinted it was in my head. When I started seeing a new doctor my first year in college and gave him my super detailed history he suggested it had been either somatic or a physical manifestation of my anxiety. Sometimes stuff can just be in your head not that I am saying your illness is. I had tests that went well above and beyond the standard blood draw and xrays.[/quote]

As did I. I had an MRI that showed a number of lesions on my brain. Even with that, I was told I needed a psychiatrist.

I am not disputing that stress can cause physical symptoms. I AM saying that too many people (doctors and laymen alike) are far too quick to dismiss REAL problems as psychiatric issues.

No therapist or SSRI is going to make it possible for me to walk like a "normal" person every day, period.

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I wonder if that isn't part of the issue. We tend to expect a certain type of parents to react by yelling and calling names, but have a different set of expectations for white, middle-class parents with no history of substance abuse, DV, or mental illness (AFAIK).

Which is not to excuse the parents' behavior...removal and involvement with CPS is stressful and emotional throughout the process, but the parents who are most successful tend to recognize at some point that lashing out at the workers isn't going to get them anywhere or improve the situation. If anything, it may make it worse. As Maxine Grey on Judging Amy said, "don't threaten the social worker. It doesn't look good on the report."

Also, I think it's important to note that the last 7 months Justina spent in the psych hospital were because a suitable placement couldn't be found - all the appropriate facilities didn't want to take her due to concerns that the parents would sue.

full disclosure: I'm a CPS worker in another state, so I am a tad biased. Families can always take their case to the media, where CPS can't really rebut or respond.

I believe she also could not be released to a foster home for the same reason. Also, a social worker had to be replaced because the parents made death threats.

I originally felt so bad for the parents until I read more. I don't know if her problem is physical or mental, but whatever it is, the parents seem to have made things as difficult as possible for anyone to find out. Even Dr Phil basically told the parents that they were going about things all wrong, that they were only hurting themselves in the long run.

And it seems telling that their home state wants nothing to do with this case. If I'm remembering correctly, Massachusetts tried to get their home state (Can't remember if it's Maryland or Connecticut or whatever at the moment) to take over several times and barely got a response. The judge implied that this problem had been dumped in the state's lap.

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I believe she also could not be released to a foster home for the same reason. Also, a social worker had to be replaced because the parents made death threats.

I originally felt so bad for the parents until I read more. I don't know if her problem is physical or mental, but whatever it is, the parents seem to have made things as difficult as possible for anyone to find out. Even Dr Phil basically told the parents that they were going about things all wrong, that they were only hurting themselves in the long run.

And it seems telling that their home state wants nothing to do with this case. If I'm remembering correctly, Massachusetts tried to get their home state (Can't remember if it's Maryland or Connecticut or whatever at the moment) to take over several times and barely got a response. The judge implied that this problem had been dumped in the state's lap.

Oh I understand the parents were only hurting themselves. I worked in the social services field for many years. While I was never a CPS worker I filled a similar role. It just bothers me that it seems, at times, that an inordinate amount of weight is put on the parents ability to play nice and be polite to the authorities, when really this should not be a deciding factor in the child's placement. Obviously the official stance is never going to be that obnoxious parents will get their kids yanked more often, but it is, in my experience, fairly common.

And my understanding is that the parents were already working with a physician who had diagnosed a medical condition for their ill daughter. Having her diagnosis dismissed and thrown into a mental health institution would seem, to me, to be no different than the people who insist on faith healing and refuse medical care. As a parent I would be livid.

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Why do I have a feeling that it's about to get all peanut butter up in here? Thank goodness my husband is gone for a day or two. Plenty of time on my hands.

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Why do I have a feeling that it's about to get all peanut butter up in here? Thank goodness my husband is gone for a day or two. Plenty of time on my hands.

:lol:

:handgestures-thumbup:

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PSychosomatic illness is a really complicated (and interesting) topic. It's a bit like the placebo affect really. And I do think it's something we get very little information/teaching about (I'm a medical student).

I wonder if that is because nobody likes saying 'I don't know'.

This discussion has really made me think about how you handle cases where you can't find anything wrong and the patient obviously has symptoms. It seems like quite a difficult problem.

Makes me think of Dumbledore: Of course it's happening inside your head, but why on earth should that mean that it's not real.

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In my immediate social circle of 4 women and 3 men, all 4 of the females have been accused of somatic diseases for chronic illnesses. Females are at a higher risk of chronic illnesses such as chronic fatigue, MS, disautonomia, etc, regardless of family background. None of my friends are religious (I am though), and none were brought up religious, with the possible exception of one of the guys. All of us have been through some serious shit to get our completely physical diagnosises.

This. It was so difficult going to the doctor and having them suggest that it's all in my head when I KNEW it wasn't, then finding out a few years down the road that the irreversible nerve damage had progressed because of their delayed action and stupidity. I think that the somatic disorders are extremely rare, and doctors aren't willing to take women seriously.

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Justina's primary nurse from the first six months has testified on behalf of the parents and alleged gross misconduct by the physicians at BCH. This is not the first case BCH has behaved in this manner. Her physician at Tufts continues to state emphatically that she does have mitochondrial disease. He sent her to BCH, according to the testimony, because it was closer and she had influenza that was causing significant complications to her condition.

The bottom line is that the treatment for mitochondrial disorders is VITAMINS for the most part. Even if she did not have mitochondrial disorder as BCH has maintained, giving her vitamins is harmless if it doesn't help, and with mitochondrial disease life sustaining if she does. There was absolutely NO REASON to take her off her vitamin regiment, even if BCH thought it was nothing more than a placebo effect. She has deteriorated dramatically since they took her off of that regiment and their argument that its somatic doesn't support the fact that her condition continues to deteriorate and they have not even attempted to even TRIAL her former regiment to see if it would make a difference. It's bad medicine, plain and simple.

It's also something the doctors and CPS workers are going to dig their feet in when the parents get belligerent. And yet, I've parented quite a few medical needs children and I completely get that her parents would get angry and obtuse. It's been over a year and they are severely restricted in their ability to even see their daughter. Until last fall, they followed the rules 100% and it got them nothing but continued strife. They broke the gag order and got angry as this has continued to escalate. The family wasn't fundie, but I don't know if they were conservative. I do know they went to the conservative media when they made the decision to violate the gag order.

From their perspective, the state is killing their child. I would be threatening to sue and doing anything but good behavior too in those circumstances.

I've also lived through a doctor nearly killing my child while he declared the problem somatic. Our son who had Cystic Fibrosis was admitted to children's hospital for vomiting that made us believe he had a bowel obstruction (he had had at least three previously known ones and had lost WAY too much of his intestines already to the point he had very short gut syndrome. He was not admitted to his regular GI but to her partner who was on call that day. For three days, I fought with his GI begging her to intervene and step in, because she was the ONLY GI the Cystic Fibrosis team felt was even remotely qualified to understand the unique GI issues related to CF, and she refused to override her partner. DH fought the partner in the hospital who kept trying to discharge our son and telling him that he was holding his poop for attention, while DH argued he wasn't physically capable of such nonsense.

On the third day, we realized that neither our son's CF doctor nor his Heptalogist had been into the hospital to see him. Hospital protocol specifically stated that higher specialties that followed medical complex children were to be notified if the child was admitted under another specialty. Heptalogy trumped all and hadn't even called to check on him. After failing to make any ground with his GI, we contacted his Heptalogist ourselves, just to give him a head's up we were there. Heptaologist pulled his chart while at a medical conference in another state, called DH to clarify what was going on, then notified his Cystic Fibrosis doctor. The GI got eaten for breakfast by the Heptalogist and for lunch by the Cystic Fibrosis doctor.

Children with Cystic Fibrosis sometimes have a tendency that their intestines just stop moving. Not all CFers do it, but if you have a tendency to do it, then it can happen again. Our child had received poor medical care while in fostercare and while we had records of three obstructions, we didn't have good knowledge of what caused them. We couldn't rule the condition in nor out. What our son's actual doctors knew was that if he lost anymore gut, he would lose the ability to obtain nutrients from his own gut and it would kill him. His GI KNEW that but was more interested in preserving her relationship with her partner over him because she always resented that his specialists sent him to her when she didn't feel fully qualified to care for his GI issues.

GI would have sent my child home with claims he was constipated of his own doing because it was somatic and he just needed to poop. It took three GALLONS of Golytely (the nasty stuff they give you to completely clear your gut for colonoscopies) before he was able to poop.

I have a LOT of sympathy for Justina's parents, because I wasn't much better, despite my own medical training, when it was my child whose life was in the balance. I just happened to know how to get doctors to listen and back me up and we were in the same medical team.

As for an increased level of somatic diseases in Fundies, I can see that. However, I can also see that sometimes they have a higher rate of chronic diseases, since stress is such a huge complicating factor for chronic diseases. I grew up fundie-lite, in a house where I was denied medical care and she did everything "alternative." I have a myriad of significant chronic medical conditions. Mine are not somatic. My lab results support my diagnosis, but sometimes they are borderline compared to the actual presentation I have. I am very grateful that my doctors listen to ME and not just the lab results or I would not have proper care. Most of my conditions I attribute to the combination of shitty medical care as a child and the high stress in my life, both as a child and as an adult. I was constantly sick as a child and significantly neglected in my medical care. My siblings were not sickly as children but were wholly medical neglected as well when they were sick. They don't have nearly the level of health issues I have. Most of my conditions fall under autoimmune disorders. I think the stress and the medical neglect trashed my immune system. My egg donor was a Narcissist, but her medical neglect was fairly common in fundie and fundie-lite circles and I can see others having the same adult outcomes of chronic medical conditions *and* a concern about not being believed because they were never believed by parents growing up.

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I am not disputing that stress can cause physical symptoms. I AM saying that too many people (doctors and laymen alike) are far too quick to dismiss REAL problems as psychiatric issues.

Wow, that was... really badly phrased. As a person with a psychiatric illness that causes extreme physical symptoms (Generalized Anxiety Disorder), my problems ARE real.

May I suggested that it would be better phrased as "People are too quick to assume that if they can't find the physical cause, one must not exist"?

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I think part of the problem is that some doctors are a bit overconfident in what they were taught... For them if it isn't included in the books, it doesn't exist ; it must be psychosomatic. But science is constantly moving forwards and progressing. We are so far from having found every disease and understood every single function of the body... (as a vet student I am always surprised at how incomplete our knowledge really is). It is quite possible it is a physical problem, just not discovered yet or not detected by the tests. I find it disappointing that doctors are so reluctant to be honest and admit this. Sometimes, we just don't know. We can only guess, and try to treat the symptoms as best we can.

Also, I can completely understand Justina's parents being aggressive and lashing out. If something like this happened to me I would be wild. Can you imagine ? Feeling so powerless, having your child taken from you when you did nothing but try your best for them. It is up there with my worst nightmares.

It's not the first time CPS has completely overreacted and taken a child from parents for seeking a second opinion. I can remember a case with a young boy. http://abcnews.go.com/GMA/video/califor ... e-19081468 Eventually the court ruled that CPS acted improperly and the parents were given back their child after months of a harrowing legal battle. Again, I feel this is an expression of a queer excess of confidence in one doctor's assessment. A doctor should never believe themself to be omniscient and be so dead against the idea of a second opinion, even if it goes against theirs. To me, it is a real problem where the medical establishment starts infringing on the patient's human rights.

Don't get me wrong, I am not against doctors or medicine. Obviously I find medical science fascinating and I am amazed at everything we have accomplished. I just think that it is wrong to so blindly trust one person, who after all is only human with human emotions and biases. Medicine is a wonderful tool, but that does not give doctors unlimited power over their patients. One doctor's opinion should never trump a patient's human rights. Taking a second opinion is a healthy attitude to have and I don't understand why it is discouraged : after all if the medicine is sound, then the patient will get the same diagnosis. No harm done !

My grandmother saw many doctors and none of them could offer a diagnosis. In the end my Dad did hours and hours of research in medical and diagnosis books (for a while he was thinking of making a diagnosis software, he was a software engineer) and he ended up finding that she had a lymphoma. Sure enough it was confirmed, but too late, and despite having chemo she died of it. I guess I am just adding this as an example that doctors aren't infallible, and even though it can be hard and scary to admit, it's perfectly normal and our medical system would work a lot better if only we would admit this.

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Some conditions ARE triggered by stress - fibromyalgia is a prime example. The pain is very real, but it's the body reacting to extreme stress or depression. [i know a number of people with fibro, including my best friend. It has nothing to do with "faking" symptoms and it's not all in their heads - it's just that they each went through some trauma and the onset of pain was pretty clearly linked to the trauma.]

Doctors don't always like medical conditions where they can't figure out the cause. Sometimes, cultural issues also play a role. Some groups tend to push harder for answers when something is wrong than others do (I've seen stoic WASPs die, for example, because it didn't occur to them to question if the severe back pain was a recurrence of cancer), and to seek 2nd opinions, and doctors are sometimes more tolerant of being challenged by some groups than others.

The worst case of actual problem misdiagnosed as psycho-somatic that I know was the 1980 case of Steven Yuz, a little boy who had severe abdominal pain and vomitting. The doctor thought it was in his head, and the boy was forced to clean up his own vomit. After he died, the autopsy showed an undiagnosed problem in his bowel - the poor child had been in serious pain, and was being punished by doctors instead of treated.

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Some conditions ARE triggered by stress - fibromyalgia is a prime example. The pain is very real, but it's the body reacting to extreme stress or depression. [i know a number of people with fibro, including my best friend. It has nothing to do with "faking" symptoms and it's not all in their heads - it's just that they each went through some trauma and the onset of pain was pretty clearly linked to the trauma.]

People with a high ACE score are also more prone to physical illness, possibly because childhood trauma changes the way the brain and body work and respond to stress.

I have a LOT of sympathy for Justina's parents, because I wasn't much better, despite my own medical training, when it was my child whose life was in the balance. I just happened to know how to get doctors to listen and back me up and we were in the same medical team.

I have sympathy, too. When my sister was 10, she was eating and drinking constantly but had lost enough weight to where she was looking skeletal. My mom, who'd been a nurse's aide for a few years, asked the doctor to test my sister's blood sugar. The doctor laughed at my mom and told her that my sister was having a growth spurt and was probably just dehydrated (we lived in the desert at the time). My mom refused to listen and insisted on another doctor and finally camped out in the ER until someone actually paid attention. Type 1 diabetes isn't terribly common, but my sister's symptoms were classic. There was no excuse for the doctors missing/ignoring them other than "they knew best." My sister could have died had my mom not bullied her way into getting her diagnosed.

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I'm even in the medical field(as a receptionist, no medical advice from me lol) and it's distressing to me how some MD's handle things they themselves don't understand.

I've known some with fibro and it's run throughout their families so it doesn't surprise me that it would run though some of the fundies.

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I do too, I just almost don't want to believe BC could be that bad that "kidnapping kids by locking them in the psych ward" is really a problem with multiple cases (but I doubt we ever will know the full story) - however I am glad for more opinions and info in this thread about the case, and I totally think their reaction was understandable.

The incident that resulted in a doctor calling my mom "crazy" and telling her she needed to see a psychiatrist was when I was a baby and a doctor accidentally broke my collarbone, I believe while putting in a central line (which is a permanent IV, and it's placed near your collarbone) but nobody told my parents about it. Really great medical practice :lol: So when my mom found out she started yelling at the doctor and instead of admitting his mistake or apologizing he told her she was crazy. I don't remember this, obviously, but it is a famous story in my family. Both of my parents and I have yelled at doctors or nurses on other occasions. While death threats are never appropriate, a very strong reaction from parents when their child is taken away from them by CPS does not surprise me at all and I think any parent would be upset by that.

I am also in medical school and I think honestly the thing that makes me most nervous about interacting with patients is I have been on the other side and know how bad it can get, so I've kind-of intimidated myself with the idea of never wanting to be like the "bad" doctors I have had, and then living up to the really good ones.

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Wow, that was... really badly phrased. As a person with a psychiatric illness that causes extreme physical symptoms (Generalized Anxiety Disorder), my problems ARE real.

May I suggested that it would be better phrased as "People are too quick to assume that if they can't find the physical cause, one must not exist"?

Yes, it was badly phrased. I should have said "... far too quick to dismiss PHYSICAL problems as psychiatric issues."

I am fully aware that psychiatric illnesses can cause physical symptoms.

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Yes, it was badly phrased. I should have said "... far too quick to dismiss PHYSICAL problems as psychiatric issues."

I am fully aware that psychiatric illnesses can cause physical symptoms.

Holy shit, dudes! A sensible, civilized disagreement on a sensitive topic. Are we sure this is still the internet?

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On psychosomatic symptoms, when I was in college, I went through really tough times in a relationship with someone who I thought was a friend. Long story short, he was anything but a nice person. The longer I remained in close proximity to him, the more panic attacks and anxiety I began to experience. I became unable to make even the most basic of decisions without turning into an anxiety-ridden mess. I was paranoid that everyone had it out for me, and I couldn't go out in public without losing it. The only thing that made it better was cutting off all ties with this person. Within 2 weeks, most of my panic attacks went away, and with therapy, I was better able to see that it was not my fault and that I was going to have to live with the fact that there was no way of knowing if he ever told the truth to me about anything, even the simplest of remarks. It was a real mindfuck, and is evidence that the "right" person can completely alter your mental state. I don't think that's the case here (unless you count the doctors), but I do feel horribly for the parents. I have wanted to chew out people as basic as those working for my prescription insurance company. I can't imagine I could be civil in a situation like this, and I am generally a pretty easy-going person. I think it's easy to criticize the parents for their behavior, but in reality, I think a lot of us would react in the same way in the same situation. Very frustrating, very sad.

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Some conditions ARE triggered by stress - fibromyalgia is a prime example. The pain is very real, but it's the body reacting to extreme stress or depression. [i know a number of people with fibro, including my best friend. It has nothing to do with "faking" symptoms and it's not all in their heads - it's just that they each went through some trauma and the onset of pain was pretty clearly linked to the trauma.]

Doctors don't always like medical conditions where they can't figure out the cause. Sometimes, cultural issues also play a role. Some groups tend to push harder for answers when something is wrong than others do (I've seen stoic WASPs die, for example, because it didn't occur to them to question if the severe back pain was a recurrence of cancer), and to seek 2nd opinions, and doctors are sometimes more tolerant of being challenged by some groups than others.

The worst case of actual problem misdiagnosed as psycho-somatic that I know was the 1980 case of Steven Yuz, a little boy who had severe abdominal pain and vomitting. The doctor thought it was in his head, and the boy was forced to clean up his own vomit. After he died, the autopsy showed an undiagnosed problem in his bowel - the poor child had been in serious pain, and was being punished by doctors instead of treated.

Actually fibromyalgia is a prime example of diseases and disorders that are initially labeled as psychosomatic or depression related, simply because the underlying cause hasn't been determined yet. Chronic diseases can often present with depression as a primary feature - but that is because it is depressing to be in constant pain, battling fatigue etc. on a daily basis. Stress does make most conditions worse, and can be a trigger - but stress can also be trigger for everything from a cold to cancer.

Recent research has determined the physical basis for fibromyalgia. This is just the first easy to understand article that popped up, but there have been actual studies done.

communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/dec/29/fibromyalgia-solved-pathology-not-mind/

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Actually fibromyalgia is a prime example of diseases and disorders that are initially labeled as psychosomatic or depression related, simply because the underlying cause hasn't been determined yet. Chronic diseases can often present with depression as a primary feature - but that is because it is depressing to be in constant pain, battling fatigue etc. on a daily basis. Stress does make most conditions worse, and can be a trigger - but stress can also be trigger for everything from a cold to cancer.

Recent research has determined the physical basis for fibromyalgia. This is just the first easy to understand article that popped up, but there have been actual studies done.

communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/dec/29/fibromyalgia-solved-pathology-not-mind/

Someone that I know who have Ehlers Danlos Syndrome have also been diagnosed with fibromyalgia. I'm a little perplexed. One of the biggest symptom in EDS is pain without reason and big fatigue. How make the difference between pain from EDS and from fibromyalgia ?

btw, I have been diagnosed with somatic symptoms for vertigo, nausea, shakiness and urticaria. I trust my doctor, but I feel so... humiliated tomorrow when he say "all is in your head, I have tell you you should stop psychoanalysis and see a psychiatrist". I just wanted to say him that all of this was real. Now, I'm good with this (why being ashamed to have psychological problems ?), but I fear the reactions from my friends.

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I believe that the general (uneducated) public has been conditioned to believe that if your medical problem isn't immediately visible, there IS no problem. That envelops all physical and psychiatric illnesses.

This creates an atmosphere that allows people to make judgments based upon a cursory glance - it's the "Oh, but you LOOK so GOOD!" phenomena...

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Someone that I know who have Ehlers Danlos Syndrome have also been diagnosed with fibromyalgia. I'm a little perplexed. One of the biggest symptom in EDS is pain without reason and big fatigue. How make the difference between pain from EDS and from fibromyalgia ?

btw, I have been diagnosed with somatic symptoms for vertigo, nausea, shakiness and urticaria. I trust my doctor, but I feel so... humiliated tomorrow when he say "all is in your head, I have tell you you should stop psychoanalysis and see a psychiatrist". I just wanted to say him that all of this was real. Now, I'm good with this (why being ashamed to have psychological problems ?), but I fear the reactions from my friends.

Someone can be diagnosed with more than one chronic condition, even if some of the symptoms are similar. It can be important to diagnosis each condition because the treatments might be different and often there will be complications and organ involvement that will apply to one condition but not another you will want to be on the look out for.

I understand if you trust your doctor, but if you feel you aren't getting answers that make sense or are being brushed off, find another doctor.

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They're pretty easy to find on Facebook. They don't look abusive at all (although I guess you can't really tell from FB) -- but I'd be willing to bet that it's the doctors who are at fault here.

They seem to be Mormon and like Fox News and Glenn Beck and such. Interestingly, all their daughters' names seem to start with J.

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