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Friday, 24 January 2014

Fibromyalgia and, perhaps, What Happened to the Missing Females with Autism


This post is about a condition about Fibromyalgia, a condition that affects 2-4% of the population. It affects women eight times more often than men, but it does, bizarrely, appear to be related to autism and is seen by some as a comorbidity.  I would go further and suggest that perhaps I have stumbled upon the missing females with autism. 

When you look at all the proposed drugs and supplements, there is a 90% overlap between the two conditions, even things like low dose naltrexone and flavonoids, like quercetin, crop up.

As we have seen earlier in this blog, autism is a disease related to the auto-immune system and inflammatory pathways.  There are many other diseases with similar origins, one example being arthritis.  Fibromyalgia tends to get lumped together with arthritis.  Families with autism present tend to have higher levels of arthritis and there are even some overlapping therapies, such as vagus nerve stimulation.
Fibromyalgia caught my attention, because it seems to be uncannily closely related to autism, but there are some distinct differences.  Classic “full-on” fibromyalgia is a disease about pain, whereas in autism people tend to have a high pain threshold.  Nonetheless, if you Google “Fibromyalgia with Autism” you will find no shortage of people suffering from both and pondering a connection.
Comorbidities are interesting, because they can indicate possible new therapies.  The people researching fibromyalgia are not generally the same people as the autism researchers.  The underlying pathologies though are very likely overlapping, even though neither is fully understood.
Fibromyalgia is neither degenerative nor curable, but it is treatable.

Here is a link to an article by a US doctor who came to the same conclusion.  (The article itself is not great)

Symptoms of Fibromyalgia

We can split these into two categories, pain-related and pain-unrelated.  In the case of autism we should look at pain-unrelated, but in the case of relatives we should look at both.  You will probably be able to diagnose a non-autistic family member with symptoms of this syndrome.
 
Pain-related:-

·        Widespread muscle pain and joint pain, the effects of these symptoms varies from person to person and from day to day.  Many people have flare-ups.  There are specific pain areas, and these are shown below:



 
·        Long-term studies suggest that it is not progressive, it does not cause permanent damage to your muscles, bones, joints or organs.
 

Pain-unrelated:-

This is a long list and typically only some will apply to any one person:-

·        Cognitive dysfunction, such as:

o   Difficulty following directions when driving

o   Losing your train of thought in the middle of a sentence

o   Difficulty paying attention

o   Memory problems

o   Difficulty expressing ideas in words

·        Depression, anxiety, irritability,  overreaction, anger outbursts, unpredictable mood swings, phobias and personality changes

·        Difficulty swallowing

·        Headaches

·        Restless leg syndrome

·        Sensitivity to the cold, and/or having cold hands and feet

·        Palpitations

·        Chest pain and costochondritis    

·        Sensitivity to light and noise intolerance.

·        Clumsy walking, dropping things

·        Hair loss

Fibromyalgia vs autism
There are some other similarities/differences with autism.

·        It often takes years to get a diagnosis and some doctors do not believe the condition exists

·        There is a specialist doctor that should know about it – the Rheumatologist, although Neurologists sometimes get involved

·        It is not curable, but it is treatable

·        It is usually diagnosed on very subjective measures

·        A blood test does now exist in the US  - the FM/a test  

The firm with the blood test is called, interestingly, “Epigenetics”.  If you make a blood test for Fibromyalgia, there is a good chance that the same researchers could develop one for autism.  They are measuring the level of pro-inflammatory cytokines.
The test is expensive, about $750.  Who knows how accurate the result is; they claim 99%.

In the UK, the National Health Service maintains that no test for Fibromyalgia exists.

A Neuro-immuno-endocrine disorder
Evidence exists that fibromyalgia is a neuro-immuno-endocrine disorder. Elevations in substance P, IL-6 and IL-8 as well as corticotropin-releasing hormone have been found in the cerebral spinal fluid of fibromyalgia suffering individuals. Increased numbers of mast cell numbers have been found in skin biopsies of some individuals with fibromyalgia.

Theoharides, who I have quoted extensively in early post on mast cells and autism, appears here too:- 

Fibromyalgia--new concepts of pathogenesis and treatment.


Abstract

Fibromyalgia (FMS) is a debilitating disorder characterized by chronic diffuse muscle pain, fatigue, sleep disturbance, depression and skin sensitivity. There are no genetic or biochemical markers and patients often present with other comorbid diseases, such as migraines, interstitial cystitis and irritable bowel syndrome. Diagnosis includes the presence of 11/18 trigger points, but many patients with early symptoms might not fit this definition. Pathogenesis is still unknown, but there has been evidence of increased corticotropin-releasing hormone (CRH) and substance P (SP) in the CSF of FMS patients, as well as increased SP, IL-6 and IL-8 in their serum. Increased numbers of activated mast cells were also noted in skin biopsies. The hypothesis is put forward that FMS is a neuro-immunoendocrine disorder where increased release of CRH and SP from neurons in specific muscle sites triggers local mast cells to release proinflammatory and neurosensitizing molecules. There is no curative treatment although low doses of tricyclic antidepressants and the serotonin-3 receptor antagonist tropisetron, are helpful. Recent nutraceutical formulations containing the natural anti-inflammatory and mast cell inhibitory flavonoid quercetin hold promise since they can be used together with other treatment modalities.

Treatment
Classic treatment involves tricyclic antidepressants, which are actually very closely related to the early antihistamine drugs. 

Even though low brain serotonin is a feature of the disease, counter-intuitively, it has been found that serotonin-3 receptor antagonists are effective; this is the opposite of what was expected.  Tropisetron is a favoured antagonist, but there are several others.  Tropisetron is also a α7-nicotinic receptor agonist, which you may recall, I highlighted as interesting in posts on the cholinergic system and autism.


This blog is about autism, so let us go back to a previous paper I looked at.


 
In that paper tropisetron is put forward as a potential autism treatment.
 

10.1.2 7 nAChRs

It is possible to use 7 nAChR agonists to treat neuroinflammation in ASD. There is strong evidence that activation of the 7 nAChR expressed on monocytes and macrophage, by inhibiting NF-kappaB nuclear translocation, suppresses cytokine release by them, and that this cholinergic anti-inflammatory pathway that provides a bidirectional link between the nervous and immune system, inhibits the innate immune response. Hence, a reasonable case can be made for the use of 7 nAChR agonists to treat neuroinflammation in ASD.

A second candidate drug, Tropisetron is a partial agonist of the 7 nAChR. Auditory sensory gating P50 deficits are correlated with neuropsychological deficits in attention, one of the principal cognitive disturbances in schizophrenia. In a clinical trial with 33 schizophrenic patients administration of tropisetron, without placebo, significantly improved auditory sensory gating P50 deficits in non-smoking patients with schizophrenia. In mice, the early postnatal period represents a critical time window essential for brain development. The administration of tropisetron from postnatal days 2-12

(P2-P12) in mice did not induce significant cognitive, schizophrenia-like or emotional alterations in tropisetron-treated animals as compared to controls, when tested in multiple behavioral assays.
 

It is the non-conventional treatments that overlap with autism, things like GH, IGF-1 and low dose naltrexone etc.  The interesting therapies relate to treating the non-pain symptoms. There are many such therapies and some have been used for decades, one or two may be interesting for autism; they may indeed be more effective in autism that in fibromyalgia.  There is even an overlap with therapies I am already investigating.

 

 

18 comments:

  1. Hi.. Andersen Tawil Syndrome gal here.. almost everyone I have met diagnosed with or suspected to have andersen Tawil Syndrome (potassium ion channelopathy) has been at one time or another been diagnosed with fibromyalgia... and or conversion disorder..
    A quick google will show you that Periodic Paralysis is one of the most often misdiagnosed as conversion disorder.. Every one of the symptoms listed under fibromyalgia above is a symptom we deal with but perhaps ten fold.. with many starting in our childhood.. Three days on a low carb low sodium high protein diet and almost every one of the symptoms was gone.. (i also supplemented with 3000 milligrams of potassium daily while on this diet and while taking quinapril I was so sure this diagnosis was the correct one for me.that i was will to take the risk of coupling quinapril with high dosage of potassium.. In the five years since my diagnosis my physician concurred and now orders my medications.. Dr Frank Lehman Horn also concurs through sharing of family history and my treatment and results.. Dr Lehman Horn and associates of the university of Ulm in Germany continue to search for unknown mutations for many of us.with an Andersen Tawil like disorder.
    Many of us have spent upwards of thirty years carrying this misdiagnosis.. many of us believe many diagnosed with fibromyalgia, conversion disorder crps and even mitochondrial disorder (of unknown etiology) may actually suffer from this disorder..
    That being said exercise is a trigger for us and actually causes damage. So perhaps those with fibromyalgia that also do not improve with exercise may be our sisters and brothers..

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    1. All very interesting. I came across an interesting American doctor, Jay Goldstein, now retired, who had some very interesting ideas on strange neurological conditions like chronic fatigue syndrome, fibromyalgia etc. Nobody really knows what is behind these conditions. A quick chat with doctors in my family, revealed that if you do not know what is causing the patient's strange "imaginary" shoulder pains, you tell them it is Fibromyalgia and it has no cure.
      Well Goldstein did try and cure it. I just bought his book "Betrayal by the Brain"; many of his drugs are the very same drugs now trialled in Autism (Baclofen, Spironalactone etc)

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    2. The problem with diagnosing with fibro instead of the appropriate diagnosis such as Andersen Tawil Syndrome as in my case which can result in sudden cardiac death, many in a given family will continue to die well before there time.. which has happened so many times in my family.. the irony being simple supplementation with potassium and an appropriate diet low in sodium low in carbs plenty of good fats and quality proteins may indeed save your life.. I have been tracking through the symptoms of my disorder along with the facial features that occur with it and have been able to track it back over 2000 years or approximately 70 generations.. the most fascinating thing I have discovered is it follows my royal lines.. and may indeed be a large portion of the maladies that affected the royals of Europe.. if this is the case these disorders are much more common and are often labeled crps fibromyalgia chronic fatigue etc... Everyone in my family has royal dopplegangers and many have more than one.. the habsburg lip and chin is very common in my family Both the retrognathic and prognathic jaws.. A few questions a dr. could ask a patient that seems more complicated are these. Did you fail your physical fitness evaluations in elementery school? Do you ever get muscle twitches or growing pains growing up? Do early deaths occur in your family tree.. what is your ancestry.. Do you feel bad or exhausted after eating a meal in a restaraunt.. sodium is a big trigger for my particular form of periodic paralysis. Sensory overload issues much.. dentist visits cause you anxiety or are very painful because lidocaine or novacaine doesnt work.. If drs. did this and explored Ion channelopathies as a possible diagnosis many of these lazy diagnosis could be done away with. I believe I may have shared with you previously that certain facial features accompany andersen tawil syndrome.. a high forehead small or prognathic lower jaw.. webbed or curvy toes and also clinodactyly crooked pinky.. I didn't realize what I was experiencing was a genetic disorder until I put together my symptoms with the problems my children were dealing with and came up with Dr Michael Segals Article on sensory overload issues and connections with the ion channelopathies.. three days on the proper diet with an extra 2500 mgs of potassium a day I woke up pain free and able to touch the floor for the first time in over 25 years.. Germanicus may not have died from poison he may have died from an attack of hypo or normo kalemic periodic paralysis causing an arrythmia as a result of long qt.. Karen

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    3. I have only recently (in last year) being diagnosed with ATS, after twenty diagnosis of mis diagnosis and being by one consultant that I was making it up. I would be interested to hear more others deal with it. Both my children are thought to have it also but still waiting on my genetic testing, only one person seemily does it in this country and I am public so waiting list.

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  2. Hi. I just recently was diagnosed with Fibromyalgia. In researching the causes of it, I found a study showing that fibro patients have over developed neurons that surround their capillaries (all biopsies were taken from the palms of their hands) . This immediately made me think of the neural overgrowth and disorganization that is characteristic of autism. I have a brother on the spectrum and I work with children with autism. I also was wondering if there is a link between the two conditions and if the gender gap for both conditions might be explained, roughly that neuronal overgrowth tends to manifest as autism in males and Fibromyalgia in females. At this point probably postmortem studies are the only way to compare nervous system irregularities, however there is huge potential for future research.

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  3. hellow Peter can you explain a little more what say Goldstein in his book betrayal by the brain?

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    1. It is an interesting book. I read it some time ago. Goldstein used numerous drugs in off-label (un-approved)applications to treat various neurological conditions, that other doctors could not treat. In the end he lost his license to be a doctor. Some of his ideas are interesting and in some cases he got the science wrong. He tried so many things, it is not surprising that some really did work. This kind of medicine is not tolerated by other doctors. All he did was experiment, but he did write books and scientific papers to explain what he did. He did not write about autism.

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  4. There is a difference between serotonin activity and serotonin amounts. For instance, SSRI drugs don't increase the production of serotonin, but they do increase the effect of serotonin. SSRI drugs (serotonin reuptake inhibitors) keep serotonin from going back into the cells. Serotonin inside cells doesn't cause problems. It is when there is excess serotonin outside of cells that a problem can exist. Serotonin outside of cells is called free serotonin. From what I've read, serotonin outside of cells is the problem in both fibromyalgia and autism. If you give SSRIs to baby rats, they end up with autism.

    People with fibromyalgia usually have a very bad case of SIBO (small intestine bacterial overgrowth). This intestinal irritation increases free serotonin. The excess serotonin activity keeps a person awake at night. Lack of sleep and stress raise CHR (cortico releasing hormone). Higher CRH suppresses TSH, so you make less thyroid hormone. With less thyroid hormone, you are more likely to have SIBO. All a vicious cycle.

    Abnormal microcirculation is found in the trigger points of fibromyalgia. More free serotonin increases fibrin formation which interferes with microcirculation. Free serotonin also shuts down blood flow. This is easy to remember if you realize that when you get a cut, the body releases serotonin to constrict blood flow so you don't bleed to death. It also helps the body form a scab. Endotoxin from the SIBO probably plays a role in reduced microcirculation as well. --- As for the histamine connection, histamine and serotonin enhance the actions of each other.

    To reduce the inappropriate use of serotonin, you need things like thyroid, glycine, taurine, magnesium, NAD (coenzymated B3) and saturated fat. You also need to treat allergies, since these will cause increased free serotonin. Stress and gut irritation needs also to be brought under control, because these also increases exposure to free serotonin.

    I'm not quite sure how the aluminum in vaccinations plays into all of this. However, aluminum greatly increases a person's reaction to allergens. Aluminum is put in vaccines to increase the reaction to them. Maybe multiple vaccines with multiple doses of aluminum is just plain too much for a baby's body. A baby's kidneys can't get rid of the aluminum in a timely manner.

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  5. Very interesting I believe I have both

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    1. I totally see the link between a person whom has gone through life (like many) being:

      misdiagnosed,
      mislabeled,
      misunderstood,
      overmedicated,
      overpunished,
      Overcriticized
      miss"fixed"
      Etc...

      ...and pain manifesting later in life, being labeled Fibromyalgia due to it's evasive explanation.

      The ASD person will have gone through a hellish nightmare as a kid...being doctored and raised using whatever new "method/drug" is purported to cure...read about adults who went through ABA therapy...which is drill and kill intensive behavioral training...

      All of the overstimulation that children on the ASD spectrum face as soon as they enter "schooling facilities" (pre-school)
      cause massive melt downs, tantrums "Tazmanian Devil Rages" etc...

      Is it the child or the SETTING.

      My son did not perform at his best in the pricy new child care center in town.
      He is very bright.
      Behavioral issues abounded while attending child care/preschool at that popular spot. I switched him to Montessori...he was very much a happier kid.

      I have Fibromyalgia. I was diagnosed at age 47. It hit hard and fast, after I experienced a traumatic event with a loved one, was exposed to an STI, and then spent a half a year being bullied, undermineded, backstabbed, ridiculed, sabbotaged by a coworker.

      I taught special education for 25 years....My specialty was/is children, pre-teen, teenagers and young adults whom behave, learn and react to their surroundings, "DIFFERENTLY" than the accepted norm...

      I havea son whom I am having "tested" to see if the label ASD fits him. He has had the following labels (and resulting methods) applied to him:

      Mood disorder nos
      Depression
      Anxiety
      ODD
      Bipolar
      Severe ADHD
      Intermittant Explosive Disorder (THAT was NOT a fun one to read about)
      DMDD (dysmorphic mood disregulation disorder ?)
      ...and now is FINALLY being investigated, tested, observed for the ASD label. I have already been applying the new info that I am reading online and guess what? I "GET" HIM NOW, because he is alot like me! Very sensitive to stimuli, need routines, etc...

      Yes... I see myself on the spectrum. It explains almost EVERYTHING.

      The connection between the two...ASD/Fibro:

      All the negative incoming stimuli from having to attend public/private "regular" schools...including all of the forced socialization...wear down the automatic nervous system, over alert the adrenal glands, keep a kid in the reptilian brain (fighting or flighting over each stimulating situation)

      Just having to sit in a class full of NOISE, LIGHTS, DISAPPROVING FACIAL EXPRESSIONS AND VOICE TONES, STUFF HANGING ALL OVER WALLS...Is taxing enough on our ASD chikdrwn, but we also expect the poor kid to THINK, LEARN AND APPLY,in modalities not matched to their skill areas (read Howard Gardner Multiple Intelligences. Take a test.) (Read Skillstreaming the Adolescent and buy the skill cards for your child/teen/adult.


      Talk about feeling stressed out at school! It is not surprising AT ALL how our ASD kids and ASD family members need to decompress after attending school or work later in life!

      The wear and tear(STRESS)of being raised by people whom do not understand you is enormous.

      Enormous stress is caused by being schooled by professionals that usually do not understand you...in publicly funded, tax payer based settings... where staff have their hands tied due to lack of funding...allonside "peers" whom terrorize you...ALLLLL THRU SCHOOL...
      Written by,
      Kat Apple

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    2. I'd like to add an interesting anecdote regarding the topic of this post. I recently met a very nice and intelligent aspie during a social event. This person was diagnosed with fibromyalgia and had also experienced a lot of stress during life. The last time stress hit hard and the person actually lost the ability to speak. This happened in a timeframe of weeks/months and no other abilities like language comprehension, vocalization or eating were affected. Doctors could not find out why this had happened and what to do about it. This person had to learn sign language and use text typing through conversations since speech did not return. On my question on how the person experienced talking during the loss-of-speech timeframe it was described as "very unnatural, speaking did not felt as a part of me. I was able to say short sentences on good days, but it was like asking a dog to dance".

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    3. Hi Anonymous,

      Does this person still need to use typing/sign language or is able to speak now? Was there anything that helped for the speech problem?

      I think I can see the same in my son...

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  6. Unfortunately this person was still nonverbal 2-3 years later. I so wish this story could have given us more clues on treatments for lack of speech!

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    1. Thank you for reply, I am so sorry to hear that.

      I cannot understand how come the speech is the only thing affected badly, while there are no other issues. The same happened in my son, he is able to say short sentences on good days and perhaps feels like a dog asked to dance on speech therapy and in daily life :( And yes it was coincident with stressful event. He has autism and is now doing well otherwise.

      Benfothiamine helped to some degree for speech disfluency in my son.

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    2. Its the same with my daughter as well. Sometimes, there are these incredibly long, complex sentences. We have tried so many speech therapists over the years, different types, nothing really worked. Now, for the first time, with the meds and supplements, and my own home brewed speech program, there is progress.

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    3. Agnieszka, RG,
      Have you ever used 5htp for speech/expressive language?
      When I used it for my son I saw that he enjoyed long meaningful conversations and was somehow more emotionally expressive.
      AJ also mentioned such an effect on his daughter which made me check myself and agree that there may have been some positive shift towards language patterns.

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    4. Hi Petra,

      Interestingly, I have never thought of 5htp for speech, as I have also never connected her difficulty with a stressful situation. I have been in more of a mind to try nicotine. I think I will give it a try though, especially as her blood work returned a low serum serotonin value. Not sure of course whether this means it would be low in the brain.

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  7. Hi Petra,

    The issue in my son is that he switched from using echolalia for communication to using his own vocabulary last year, but at the same time he experienced a stressful situation at his preschool coincident with febrile infection. And then he developed speech disfluency which puzzled all SLP specialists who saw him later.

    I have not used 5htp yet and you gave me another reason to try. Thank you.

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