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Mayo Clinic New Article - Released 11/02/12


issie
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Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a heterogeneous disorder that includes several forms, all linked to sequence variations in genes encoding for fibrillar proteins and/or collagen processing enzymes leading to reduced structural integrity of connective tissue. Joint hypermobility, which is characteristic of EDS type III associated with sequence variations in tenascin X, has been frequently associated with POTS.47, 48, 49 However, the mechanistic relationship between these 2 entities is incompletely defined. Whereas tenascin X sequence variations affect cardiovascular tissue leading to valvular disease,50 the hypothesis that impaired integrity of vascular connective tissue leads to impaired venous return and secondary orthostatic tachycardia has not yet been convincingly tested. EDS III is also characterized by early onset of chronic pain, particularly in the shoulders, hands, and knees,51 which may be disabling due to associated anxiety, depression, and a somatosensory amplification state52; this may lead to secondary hypersympathetic responses triggered by fear of pain on standing.

This bit EDS III is also characterized by early onset of chronic pain, particularly in the shoulders, hands, and knees,51 which may be disabling due to associated anxiety, depression, and a somatosensory amplification state52; this may lead to secondary hypersympathetic responses triggered by fear of pain on standing. in my opinion is a load of rubbish. It is basically saying that folk with EDS are worried about pain all the time so they get POTs symptoms what a load of rubbish Grrrr

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I am going to post this on private UK EDS group and see what they think Issie I will post back an response to this article later.

This has got me quite fed up really but I know it was going this way for some time as my children's old cardiologist kept pointing out that he could not find any evidence of arterial resistance or something like that thus could not see how my children's EDS could be related unless it was not due to the theory that blood vessels are too elastic! So I am guessing as these top research places can not find out what is going on they are going to say it is all in your head because you are worried about the pain you are in because you are over sensitive!!

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I don't like this article at all, several times it repeats the "somatic hypervigiliance" line. Doesn't even comment on the autoantibodies found in various studies nor the loss of transcriptional function of the norepinephrine transporter.

POTS is not psychosomatic that's just ignorant and quite frankly insulting.

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I wish i could understand This articel a litle better. But as comented above, the heavy leaning on psychosomatic was maby a bitt much. Ofcourse the mind plays a rolle inn all illneses. And ofcourse anxiety will worsen pots symtoms.

Ust whant clearification please, was it to be u derstud that symtoms not dirctly to pots was to be considerd psykosomatic? And When hart rathe regulated, any symtoms on still has psykosomatic?

Since pots efect so many difrent People of many difrentresons it seems like i must have misunderstud some How?

I guess the more People reading This articel the more opinionen we will have...

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For some reason, I actually thought they might have learned something. I should've known better.

No mention of mast cells unless I just missed it. I was po'd after reading repeatedly that the patients

are hypervigilant and making their symptoms worse. Gee, ya think having a racing heart, petite mal,

hypoperfusion, hypoglycemia, etc might affect a patient's behavoir ?

Why does the medical community insist on demeaning the patient when surely they recognize that their treatment methods are failing us ? Or .. do they see this in themselves ?

Tc .. D

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It is either one because they are really fed up at not being able to find a real answer or two they are being somehow guided by the insurance giants, who much prefer the it's all in your head theory as the treatments are much cheaper in the long run and if they do not work they can always turn around and say it is your own fault for net getting better, you are not trying hard enough to overcome your problem, we can no longer support you!

I am in the UK by the way so our medical system is quite different to yours in in the USA but we still have a big nasty insurance company advising our government and health service,they love the biopsychosocial model of health care!!!

The biopsychosocial model claims that a disease or disorder is explained through biological, psychological, and social factors. Interestingly, it is a model which has been adopted by this company, who the government consulted on regarding Welfare Reform. They provide insurance and rehabilitation services.

OPPs sorry rant over I promise.

Edited by corina
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I always wonder why these docs don't realize that "hyper-vigilance" is just as much a symptom as is the tachycardia or fluctuating BP or abnormal sweating or GI symptoms. When it occurs, it seems to me that it's being driven by the same neurotransmitters that are driving the other abnormalities. So why is it that tachycardia is seen as a physical symptom that warrants treatment but "hyper-vigilance" is somehow just in your head and needs to be treated with psychotherapy. Hello! Maybe if you treat the underlying neuro-pathology that's driving this whole syndrome the hyper-vigilance will go away along with all the other issues.

I also "love" the way they just blow right past the "sleep disorders",GI Symptoms and Migraines that they mention. As though getting 3 hours of sleep a night in broken up segments wouldn't cause anybody to have weird symptoms, let alone those of us who already have messed up ANS issues.

Have to agree with the others, don't think this article is going to do us any favors, especially with the MAYO label attached to it. UGH!

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I think the Mayo must get some kind of money that requires them to produce a paper now and then. I find most of what the Mayo spits out is old info, in a new paper. And it usually just discusses what we all know and they have no new ideas on cause, or treatment. My pet peeve is I really hate the word deconditioning, used like we were so out of shape we ended up with POTS. I know some pretty athletic people who ended up bed bound for years after a viral onset.

And I agree with all the above posts.

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It seems like this paper is trying to set the stage for making POTS the fibromyalgia of neurology, and I mean that with no disrespect to fibromyalgia sufferers, to whom I have no doubt is a physical condition outside their control.

But one can't deny that fibromyalgia has become designated as psychosomatic illness and therefore the research is almost non existant when it comes to trying to find biological origins of the illness.

We can't allow this to happen, if we get stigmatized like this it will virtually end any respectable effort to find the cause and possibly the treatment of POTS. This year has been very productive, new autoantibodies have been discovered and the NET dysfunction has been found. This is not the time to back track and fall back into this quagmire of pseudoillness.

And I have to believe that the psychosomatic sentiment is stemming from a foundational frustration at not being able to find an effective treatment. The logic is, "Oh, we throw fludrocortisone, midodrine, and beta blockers at it, if those don't work then we've tried all these medications and obviously the person is just messed up in the head." ... HELLO! Fludrocortisone was originally approved for something far different than POTS. In fact, none of these treatments are FDA approved to be effective for POTS. There's all these research articles coming out about autoantibodies - well none of these drugs with the exception of possibly fludrocortisone have any immunomodulatory effects.

Don't give up the fight.

But I feel we have a strong need for advocacy, because this psychosomatic view needs to be put out like fire.

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...are they for real? like the above posters, i'm also pretty uncomfortable with all the somatic suggestions made in the article, especially the ones suggesting that somatic hyper-vigilance is what makes this illness chronic. i'm sorry, do they think that we should just all put on a happy face and pretend we're not affected/scared by all these debilitating symptoms?

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Interesting that all the drugs that are supposed to make me less hypervigilent, less anxious, less depressed...all make my symptoms worse! They can't explain why it happens so its in our heads. I will say one more time, if any of these yahoos had to live one day in my body, they wouldn't make it. My friends and family remark frequently how well I have taken this illness and sudden forced change to my lifestyle. I simply am not having emotional problems....my body just doesn't do what it's supposed to anymore.

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“Many patients with POTS present with multiple chronic symptoms that are not directly related to orthostatic stress, and only a small subgroup of patients with POTS have a defined autonomic disorder.” All of the articles that I have read in the past have always stated that POTS is an autonomic disorder. However, according to this Dr. very few of us actually have an autonomic disorder?

It’s is very disappointing that this was published by Mayo Clinic. It seems to almost go against information they have published in the past on POTS.

There have been studies done in the past that showed POTS was not a psychological disorder. It almost seems like they are reclassifying POTS as a psychological disorder. I wonder if it is possible to provide feedback on the article? Has anyone ever seen the POTS specialist that wrote this article?

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But I feel we have a strong need for advocacy, because this psychosomatic view needs to be put out like fire.

Totally agree, Jangle. It's so insulting to be this ill and then have a major medical institution questioning your sanity (even a little bit). I really wish they'd stop, but what can we do?

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FWIW, I'm not too worried about credible medical professionals believing the info in this article. These are intelligent people who can tell a fluff piece when they see it and will research orthostatic intolerance further.

I'm a little concerned that the general public will see this and think we're nuts tho. But then again, how many people nowadays in the general public just google Mayo Clinic to get their opinion ? I read at least 5 sources.

FWIW, I haven't seen advocacy to large for profit organizations such as this be productive. Getting the word out on the web tho has been. Just look at us ... : )

tc ... D

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I think I'm going to see if I can find out what Dr. G thinks about this article. I was actually clued in by Janie that an article was coming out and I guess Dr. G knew about it already. When I sent the copy of the antibodies article to him --he had not seen that one ---but, knew about this one. He didn't comment on the antibodies one ---by the way.

So, I will see if I can see what is thought of this article. This doc is in MN and not AZ ---by the way. I think that us here in AZ are getting taken more seriously and I think we are getting more help from what I can tell. I'm glad my doc is Dr. Goodman and he is still trying to help us and isn't telling us that it's in our heads. In fact, he is addressing mast cell issues now and has let me try some drugs a little out of the ordinary - to just see if it would make a difference. I think he is really trying to figure this out. Everyone is entitled to their "opinions", but science is advancing at a rapid pace and much is being discovered.

Issie

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Hmm...this is interesting as I just had a long conversation with my Cardio on this very subject on Friday. Turns out his previous partner was very interested in POTS and was a known expert on the condition; thus the likely reason I was diagnosed so quickly by him. He has been emphatic in each of my visits that I NEVER let anyone tell me this is 'all in my head'. He has seen too many cases, has seen the physical manifestations, and was able to see for himself my turn from totally normal to this state literally overnight,. I do fear, however, that I will not be treated appropriately by other doctors if Mayo is sending out the signal that this is largely psychological in nature. That is a very concerning development.

He offered an opinion on why doctors do this however that I thought was interesting. He said the medical community is, naturally, filled with Type A, impatient sorts. He said that when you hear from a doctor 'there's nothing else I can do for you', that means the doctor has simply run out of patience, and you are just not worth the investment to try and decipher because you no longer fit a perceived paradigm that the doctor usually maps out for you in the first five minutes of your first visit. His suggestion was to be persistent because while there are doctors out there that largely want to blame psychological reasons, he largely blames this on a lack of patience. He also believes that anxiety is way too over-diagnosed, especially in women, due to the aforementioned reasons. He told me he has had several cases of people being told 'it's just anxiety' for years, only for him to find the medical reason for their condition once he actually did the appropriate workup. His belief is that women in particular are much more 'stoic' and it's largely due to their treatment from the medical community.

I would suggest, if we encounter doctors that want to label our POTS as a psychosomatic disorder, then I would simply ask, have you, as a doctor, lost patience with me and my medical issues? I would think the answer or perhaps defensive attitude could be quite revealing. Quite frankly, I expected better out of Mayo.

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You may all find this article of interest: http://www.practicalpainmanagement.com/pain/neuropathic/clinical-recognition-central-abnormal-neuroplasticity

"The two hallmarks of a patient with CAN are one whose pain is constant and whose peripheral, originating pain site is either absent or healed and doesn’t respond to local and peripheral treatments such as injections, topical medications, prolotherapy, physical or electromagnetic measures, or anti-inflammatory agents. These patients characteristically exhibit sympathetic outflow signs with symptoms of tachycardia, hypertension, vasoconstriction, diaphoreses, piloerection, nausea, anxiety, and insomnia. Hormonal disturbances are extremely common as indicated by elevated serum cortisol and pregnenolone until such time as pituitary and adrenal exhaustion occurs and serum levels of some pituitary and adrenal hormones drop below normal. Pain control and treatment in these patients is difficult as tissue loss and cell rearrangement may render some medications rather ineffective. Practitioners may have to be creative and experiment to find a good pain control regimen. At this time, there is only symptomatic but no curative treatment. Understanding that some chronic pain patients have CAN rather than a peripheral pain problem should lead investigators to look for, and find, some curative approaches. For now, clinical identification and profiling of suspected CAN is the first step."

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I was so excited to read the article and at first thought good he's hitting on some of the known causes and then he wraps it with it's all in your head. It was so disappointing. Especially since vanderbilt already did a study on this and found that anxiety and depression are no more common in this population then the rest of the population.

It also appears that his research is based on evaluating existing studies and this is only his opinion or his perspective of the data he collected. I didn't see much he researched or authored himself.

At the bottom of the article the studies he used are listed with links to them, there are a few that are psych in nature, I haven't had time to read them yet.

I don't know if any of you noticed he can be e-mailed directly from the article. Maybe it's time the patient's gave him an education from their perspective.

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Grar. My ANS neurologist was explicit that I not use the term "dissociation" to refer to my spaciness specifically because she was worried folks would treat it as a mental issue. And - regarding chronic pain from hypermobility and fibromyalgia and mood disorders - my POTS started at a time when I was at my lowest pain levels since childhood (due to Cymbalta for said pain, which is probably what caused the POTS) and also at one of my most stable times of my life mood-wise. So I am totally flabbergasted by this. I thought "finally, a condition that has measurable issues that I can show to any doctor to prove something is wrong!" but now they'll go behind that proof and say it's all in my head anyways (conscious or subconscious)?! *angry*

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Hey guys, I don't know if you've noticed how many people have looked at this thread in a very short amount of time. We have all the net's looking at our site. So, many people are looking at this article and what we are writing.

He needs to talk to all the docs that are treating us and maybe more patients that are having science proving our issues --- Some of us are having things starting to show up that haven't in the past. If we could only have test sensitive enough to pick things up sooner.

Issie

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Jangle, there are new studies on Fibromyalgia using MRI's showing pain response areas lighting up in the brain as a result of painful stimuli. Validates the physical nature of Fibro and also studies pointing to Fibromyalgia as a central nervous system disorder. I have Fibro.

Yes, I have seen these studies, and maybe in time the prevailing opinion of the medical community will change with respect to fibromyalgia sufferers. However, in this case I highly doubt that POTS is a central nervous system sensitization as this article argues. The primary evidence being drugs that don't have anything to do with the central nervous system such as ivabradine, fludrocortisone, midodrine etc. have been effective. Additionally autoantibodies to peripheral nerves as well as the heart have been identified in POTS patients not to mention the loss of NET activity.

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It is quite easy these days to find the right research articles to fit ones theory if you have the mind to blatantly exclude proven research that states a different outcome. This sort of approach does not help anyone with our symptoms get to the bottom of what is really going on.

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Hey guys, I don't know if you've noticed how many people have looked at this thread in a very short amount of time. We have all the net's looking at our site. So, many people are looking at this article and what we are writing.

I think, obviously, this guy should know by now ---he is going to get a lot of flack for writing this article the way he did. Even if he is using other articels to draw his conclusions. He needs to talk to all the docs that are treating us and maybe more patients that are having science proving our issues --- Some of us are having things starting to show up that haven't in the past. If we could only have test sensitive enough to pick things up sooner. We are NOT causing our own bodies to malfunction and we are NOT creating this "world" that we really don't want to be living in. I don't think so many of us would be on the desperate search for answers and a CURE - if this is something we wanted to hang on to. If we were doing it with our minds ---then we could just as well undo it - when we get tired of it. Well, there are plenty of us tired of it and wishing for a way out. We don't get anything out of it --and many, many of us are trying to not let it stop us from LIVING our lives. So, despite ourselves - we are pushing onward.

Jangle, you go man! I knew you'd get fired up. Let us know if you get a response.

Issie

I so very much agree with your point of view. For me, I was lucky enough to have documented changes in my medical record that easily show the vast difference in my body pre-POTS and post-POTS. My POTS did not come on gradually, there was a clear demarcation line. Thus far, I have been able to challenge any doctor that claims it is either lifestyle or 'anxiety' due to my unique circumstances based upon my history. When they have all agreed that my symptoms would not come on suddenly due to either of those, they do, however, come up with some pretty 'interesting' conclusions instead (a muscle leg strain was the most 'out there' one thus far). It wasn't until I met my Cardio, who has experience in POTS, that I was able to understand the process and onset.

It makes me wonder if diseases like MS, ALS, and others were labeled as 'psychosomatic' before they found out the processes and causes of these diseases. I know my grandfather had ALS and it took him years and years to get a diagnosis because it was relatively unknown. Up until that point, his symptoms were labeled as 'all in your head'. Of course, this is before ALS became well known. His life was considerably shortened due to doctors unwilling to look past their own assumptions and actually find out what was ailing him.

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