ME/CFS/FM/POTS/IBS - Inter-related At the Core?

[Cort]

It wasn't a big study but it could be an important study. The authors supposed that having POTS would predispose young patients to having other common comorbid disorders such as ME/CFS, fibromyalgia, gut problems, migraines, etc. So they took young POTS patients and young patients with these other "functional disorders" and saw who had what.

They found that POTS patients didn't tend to have more of the other functional disorders than the other patients; i.e. POTS itself was not causing POTS patients to also have FM, ME/CFS and other other disorders. They were all kind of the same package; everyone had a mix of problems and some of those patients happened to have POTS. That suggested (to me) that something underneath all of those disorders is driving them.....some general dysfunction that shows up in various ways...

J Pediatr. 2015 Apr 24. pii: S0022-3476(15)00340-6. doi: 10.1016/j.jpeds.2015.03.039. [Epub ahead of print]

Comorbid Conditions Do Not Differ in Children and Young Adults with Functional Disorders with or without Postural Tachycardia Syndrome.Chelimsky G1, Kovacic K1, Nugent M2, Mueller A1, Simpson P2, Chelimsky TC3.Author information

OBJECTIVE:

To determine if several multisystem comorbid conditions occur more frequently in subjects with tilt-table defined postural tachycardia syndrome (POTS) compared with those without.
STUDY DESIGN:

Retrospective chart review of 67 subjects aged 6-24 years, referred to a tertiary care neurogastroenterology and autonomic disorders clinic for a constellation of functional gastrointestinal, chronic pain, and autonomic complaints. All patients underwent formal autonomic testing, Beighton scores assessment for joint hypermobility (0-9), and fibromyalgia tender points (0-18) (43 subjects).
RESULTS:

Twenty-five subjects (37%) met tilt table criteria for POTS. The median age of 16 years (range, 12-24 years) in the POTS group differed from 15 years (range, 6-21 years) in the no-POTS group (P = .03). Comorbidities including chronic fatigue, sleep disturbances, dizziness, syncope, migraines, functional gastrointestinal disorders, chronic nausea, fibromyalgia, and joint hypermobility did not differ between groups. All subjects with fibromyalgia by tender point-examination had a Beighton score ≥4 (P = .002).
CONCLUSIONS:

Comorbid conditions are equally prevalent in children and young adults with and without tilt-table defined POTS, suggesting that POTS itself is not a cause of the other comorbidities. Instead, POTS likely reflects another comorbid condition in children with functional disorders. Dizziness and syncope, classically associated with POTS, are not predictive of a diagnosis of POTS by tilt table, a test that is still required for formal diagnosis.

These results suggest a paradigm shift in the concept of POTS as the physiological basis of many functional symptoms.

 

[AnneVA]

So. What does this mean? I believe that there is an umbrella under which a lot of these disorders/symptoms reside. What is the umbrella? I have been suspecting that EDS is that umbrella. Everything made of connective tissue is stretchy and that affects the gut, blood vessel integrity, joints, muscles, tissue, skin. The dr. who started my daughter on regular saline infusions described how the slow saline iv fluid is better able to get into the tissue compartments and that those tissue compartments are leaky since they are made up of faulty connective tissue and are, hence, unable to retain fluid and electrolytes very well. That is why drinking 130 fl. oz. of a mix of electrolyte drinks, water, etc. did little for her. It sets up an almost constant state of some level of dehydration and that in turn affects all body systems. Chelimsky and his wife are considered among the top POTS dr.s in the country.

 

[Cort]

So. What does this mean? I believe that there is an umbrella under which a lot of these disorders/symptoms reside. What is the umbrella? I have been suspecting that EDS is that umbrella. Everything made of connective tissue is stretchy and that affects the gut, blood vessel integrity, joints, muscles, tissue, skin. The dr. who started my daughter on regular saline infusions described how the slow saline iv fluid is better able to get into the tissue compartments and that those tissue compartments are leaky since they are made up of faulty connective tissue and are, hence, unable to retain fluid and electrolytes very well. That is why drinking 130 fl. oz. of a mix of electrolyte drinks, water, etc. did little for her. It sets up an almost constant state of some level of dehydration and that in turn affects all body systems. Chelimsky and his wife are considered among the top POTS dr.s in the country.

Connective tissue issues are a possibility. Check out Dr. Peter Rowe's finding in ME/CFS Adolescents - something similar appears to be going on there

• http://www.cortjohnson.org/blog/201...scular-strain-chronic-fatigue-syndrome-mecfs/

 

[Merida]

This is another important topic. Antidiuretic hormone ( ADH) is synthesized in the hypothalamus and secreted by the posterior pituitary. The primary functions of ADH are to retain water in the body and to constrict blood vessels. So, in fact, EDS people may be having issues to low ADH secretion. Has anyone been evaluated ? I do not have EDS, but am peeing out 3 liters a day and still dehydrated.

The craniosacral specialists ( osteopaths/some chiropractors/some advanced bodyworkers) remind us how the pituitary functions. There is interbone movement between the body of the sphenoid bone and the occiput. The sphenoid is a vertical bone behind your eyes, and the occiput is at the base of the skull. The pituitary sits in the little notch in the sphenoid called the sella turcica. The gentle interconnected movement of the sphenoid and occiput is thought to stimulate the pituitary. ( from Chiropractic : The Anatomy and Physiology of SacroOccipital Technique by Jonathan M.P, Howat, D. C, DICS,FICS,FCC)

I actually had the nerve to ask a very well-known neurosurgeon ( former chief of neurosurgery at Loma Linda) if he felt the principles in this (incredible) volume were correct. He read the book ! He walked around the room, looked out the window and said, " It will take 20 years."

Think structure and function. The pelvic bones reciprocate with the cranial bones. Cranial bones have specific motions that affect the function of the entire body. People who have scoliosis may, in fact, have too much asymmetry for the nervous system to compensate for.

There is an important new book by a very respected orthopedic surgeon, Prof. Dr. Valentyn Serdyuk, Univ. of Odessa, Ukraine, Scoliosis and Spinal Pain Syndrome. Scoliosis is much more complex than appreciated. Also, read some of the articles by Erik Dalton. This can't take 20 years.

 

[Issie]

I have EDS and do have a hard time with feeling hydrated. There have been POTS people checked for this pituitary hormone and put on the replacement. It helps the body retain fluid. But with the med you are to greatly limit your liquid intake. To throw another puzzle piece in the mix - some of us also have low renin and aldosterone. This too affects hydration and has to do with kidney function. When this is a problem, the normal treatment is diuretics - which totally goes against what is felt to be POTS treatment to increase blood volume. (This is another piece of my complex puzzle.). Since I also have CKD(chronic kidney disease)- salt and mega hydration is counter indicated. Big NO NOs.

I have been watching a lot of UTube videos by a chiropractor - Dr Bergman in CA. I would love to go to him. Since I have EDS, I dislocate a lot and my back and neck are constantly moving out of place. We tense up our muscles to try to hold ourselves in place and upright. So there is a lot of pain and muscle fatigue and spasms. I think if there were a way to keep our spines and therefore nerves in alignment - it would help anyone.

Issie

 

[Merida]

Thank you Issie. I appreciate the information. Geez, I learn so much from educated, smart patients. Yes, it is the 'balance' that is so hard to achieve - so many hormones/biochemicals out of balance. I will check out Dr. Bergman. I have tried so many chiros and body-workers. Just don't hold. Two months ago I started with a traditionally- trained osteopath thinking maybe he could take the excessive twist out of my spine/pelvis/neck. It is interesting that when someone gets my upper neck/occiput 'in', my sacrum rotates out of alignment, and vice-versa. There are others in my support group who have noted this. So the osteopath is anything but 'traditional.' He is Chinese and I believe he is a qigong healer?? Lots of strange ( but good) experiences there. We'll see.

 

[Merida]

It wasn't a big study but it could be an important study. The authors supposed that having POTS would predispose young patients to having other common comorbid disorders such as ME/CFS, fibromyalgia, gut problems, migraines, etc. So they took young POTS patients and young patients with these other "functional disorders" and saw who had what.

They found that POTS patients didn't tend to have more of the other functional disorders than the other patients; i.e. POTS itself was not causing POTS patients to also have FM, ME/CFS and other other disorders. They were all kind of the same package; everyone had a mix of problems and some of those patients happened to have POTS. That suggested (to me) that something underneath all of those disorders is driving them.....some general dysfunction that shows up in various ways...

J Pediatr. 2015 Apr 24. pii: S0022-3476(15)00340-6. doi: 10.1016/j.jpeds.2015.03.039. [Epub ahead of print]

Thank you, Cort. So grateful for your leadership and wisdom.

 

[Issie]

Thank you Issie. I appreciate the information. Geez, I learn so much from educated, smart patients. Yes, it is the 'balance' that is so hard to achieve - so many hormones/biochemicals out of balance. I will check out Dr. Bergman. I have tried so many chiros and body-workers. Just don't hold. Two months ago I started with a traditionally- trained osteopath thinking maybe he could take the excessive twist out of my spine/pelvis/neck. It is interesting that when someone gets my upper neck/occiput 'in', my sacrum rotates out of alignment, and vice-versa. There are others in my support group who have noted this. So the osteopath is anything but 'traditional.' He is Chinese and I believe he is a qigong healer?? Lots of strange ( but good) experiences there. We'll see.

An osteopath was my savior when I broke my back. He had me out of pain within 20 minutes. He worked wonders for me. The massage therapist in his office did too. Sadly, I don't live close enough to see them.

Issie

 

[LondonPots]

I've been assuming all along that my CFS/ME and POTS and whatever else are caused by brain inflammation (caused by what?)...

I'm interested in the EDS comments, wondering if my agonising back pain at the start of all this was EDS - I'd said to anyone who would listen (not that anyone did) that it felt like the guy-ropes holding my spine steady were loose, meaning a 1mm move in the wrong direction would give agonising nerve pain. It went away eventually, don't know why.

 

[Merida]

I've been assuming all along that my CFS/ME and POTS and whatever else are caused by brain inflammation (caused by what?)...

I'm interested in the EDS comments, wondering if my agonising back pain at the start of all this was EDS - I'd said to anyone who would listen (not that anyone did) that it felt like the guy-ropes holding my spine steady were loose, meaning a 1mm move in the wrong direction would give agonising nerve pain. It went away eventually, don't know why.

Penelope, You might want to read about sacroiliac dysfunction. There are various orthopedists/osteopaths/chiropractors that recognize that back pain may commonly be due to an unbalanced sacrum. The lower spine is attached to the top of the sacrum. The sacrum is held in place with ligaments, which attach the sacral bone to the ilia or hip bones. There is also an boney interlocking mechanism between the sacrum and ilia.
A woman's wide pelvis allows one less sacral segment to lock with the hipbones . There is more torque, or twisting tension, across the sacrum as women walk. Sacral ligaments can be injured/stretched by a fall on the tailbone, pregnancy, car accidents, hitting the car brakes, twisting/lifting, or even prolonged sitting in a poorly designed chair. Once sacral ligaments are stretched or injured the sacrum can lock in an abnormal position.

It is interesting to appreciate that the sacrum/pelvis is the foundation of the body, and must bear ALL downward and upward forces when walking and upright. Changes in the position of the sacrum changes the center of gravity, hence balance, for the entire body.

You can demonstrate this for yourself with a pencil by finding the balance point on your finger. Any small change in the weight of the pencil will change the balance point for the pencil.

Our musculoskeletal system is under constant gravitational stresses. The nervous system receives messages from proprioceptive nerves and then changes muscle tensions so that we can walk/move in the most efficient manner possible. The anterior, or front part, of the temporalis muscles ( sides of skull) are very rich in gravitational, proprioceptive nerves. These nerves communicate with the brain about body position.

When the unstable SI joints cause a shift in the center of gravity, the anterior parts of the temporalis muscles are 'activated' and spasm.
The temporalis muscles are also inserted into the upper part of the jaw, and these spasms cause the jaw to move back toward the cervical spine, and up towards the top of the head. This disturbance of the mechanics between the jaw and the the skull then causes the head to tilt forward, which causes the cervical spine to straighten and lose its normal curve. ( Sources : Cunningham's Texbook of Anatomy and Chiropractic: The Anatomy and Physiology of SacroOccipital Technique, also my article Pelvic and Sacral Instability : A Facet of Fibromyalgia?" Fibromyalgia Frontiers 2008. Vol 16(1): pp 5-11)

This was long, but it begins to help us appreciate how stretched sacral ligaments and sacral dysfunction affect the jaw, the neck, and the entire body. A BIG DEAL that is rarely appreciated. I still feel that it is highly likely that reason women are getting CFS/FM more often is the fact that our sacrums and pelvises are more unstable.

I wasn't sure how my article would be perceived, but a got a very kind note from Dr. Alan Pocinki, " Kudos on your excellent and thought-provoking article." " S-I and pelvic instability are of course associated with hypermobility and ligament laxity, but your observations about their CNS effects are 'very cutting edge.' The CNS effects are for another day.

May we all work together to understand this terrible problem, and then SOLVE IT. Thanks, again, to Cort.

 

[Issie]

The osteopath and massage therapist I saw did cranial sacrum work and it made a huge difference. I think I'm going to try to find one here. With EDS, and too stretchy everything, it's really easy for me to dislocate and things go out of place. I can usually put things back in. But this type work works on the nerve transmissions too. So it's more than just alignment - it's freeing energy and helps nerve function.

Issie

 

[Merida]

Oh Issie, what a journey!!! I have tried every kind of body work possible. And it is interesting that subtle changes in structure produced major symptom changes, including fatigue. At least this happened for the first 8 years or so post injury. Now, not such dramatic changes. A great chiro ( C.Curtis Buddingh- sacro-occiptal chiro) finally felt that it was my jaw (!) that was keeping instability in the entire structure. So I flew to Virginia to see a university- trained dentist/ researcher, Dr. Brendan Stack. Check out some of his videos on You Tube. These videos are very interesting. Profound neurological symptoms that stop dramatically when oral appliances are fitted. Dr. Stack is brilliant.

My TMJ MRI showed that my 'jaw' discs had slipped inward. We spoke with a great surgeon there, who has done the disc surgery correction for 25 years. He said that patients with typical TMJ pain have discs that have slipped forward. Those of us who have discs slipped inward have more neurological symptoms and less TMJ pain. Whew.

So the treatment involves surgical correction then oral appliances. I decided to try a local dentist ( west coast) due to distance, and was fitted with an oral appliance - no surgery. Just the appliance changed many symptoms - headache, facial pain, tingling etc in arms, tremor, sense of well - being. The local person just did not have the expertise, or my discs would not move into position. So, this did not work for me . There are a few dentists who are treating Parkinson's with oral appliances.

According to the great physiologists ( osteopath/ sacro-occiptal chiros) the jaw, upper neck, and cranial bones ( especially occiput) all reciprocate and work together - and their movement/function reciprocates with the pelvis. If one part is 'out' the whole system can be affected - especially for people with scoliosis, EDS ? Major blood vessels to the brain can be impinged.

So check out Dr. Brendan Stack and his videos - they are literally and figuratively 'jaw-dropping.'

 

[Cort]

This is another important topic. Antidiuretic hormone ( ADH) is synthesized in the hypothalamus and secreted by the posterior pituitary. The primary functions of ADH are to retain water in the body and to constrict blood vessels. So, in fact, EDS people may be having issues to low ADH secretion. Has anyone been evaluated ? I do not have EDS, but am peeing out 3 liters a day and still dehydrated.

The craniosacral specialists ( osteopaths/some chiropractors/some advanced bodyworkers) remind us how the pituitary functions. There is interbone movement between the body of the sphenoid bone and the occiput. The sphenoid is a vertical bone behind your eyes, and the occiput is at the base of the skull. The pituitary sits in the little notch in the sphenoid called the sella turcica. The gentle interconnected movement of the sphenoid and occiput is thought to stimulate the pituitary. ( from Chiropractic : The Anatomy and Physiology of SacroOccipital Technique by Jonathan M.P, Howat, D. C, DICS,FICS,FCC)

I actually had the nerve to ask a very well-known neurosurgeon ( former chief of neurosurgery at Loma Linda) if he felt the principles in this (incredible) volume were correct. He read the book ! He walked around the room, looked out the window and said, " It will take 20 years."

Think structure and function. The pelvic bones reciprocate with the cranial bones. Cranial bones have specific motions that affect the function of the entire body. People who have scoliosis may, in fact, have too much asymmetry for the nervous system to compensate for.

There is an important new book by a very respected orthopedic surgeon, Prof. Dr. Valentyn Serdyuk, Univ. of Odessa, Ukraine, Scoliosis and Spinal Pain Syndrome. Scoliosis is much more complex than appreciated. Also, read some of the articles by Erik Dalton. This can't take 20 years.

We did an inquiry into sella syndrome in ME/CFS and found that a subset of patients reported having it.

I think there's a lot of stuff going on in the neck/head area...I hope it doesn't take 20 years...

 

[Cort]

Thank you Issie. I appreciate the information. Geez, I learn so much from educated, smart patients. Yes, it is the 'balance' that is so hard to achieve - so many hormones/biochemicals out of balance. I will check out Dr. Bergman. I have tried so many chiros and body-workers. Just don't hold. Two months ago I started with a traditionally- trained osteopath thinking maybe he could take the excessive twist out of my spine/pelvis/neck. It is interesting that when someone gets my upper neck/occiput 'in', my sacrum rotates out of alignment, and vice-versa. There are others in my support group who have noted this. So the osteopath is anything but 'traditional.' He is Chinese and I believe he is a qigong healer?? Lots of strange ( but good) experiences there. We'll see.

If I remember correctly you can have EDS of the spine - or EDS in one area (pelvis) and not the other. It's not always found bodywide. Could you have EDS in the spine?

 

[Issie]

Oh Issie, what a journey!!! I have tried every kind of body work possible. And it is interesting that subtle changes in structure produced major symptom changes, including fatigue. At least this happened for the first 8 years or so post injury. Now, not such dramatic changes. A great chiro ( C.Curtis Buddingh- sacro-occiptal chiro) finally felt that it was my jaw (!) that was keeping instability in the entire structure. So I flew to Virginia to see a university- trained dentist/ researcher, Dr. Brendan Stack. Check out some of his videos on You Tube. These videos are very interesting. Profound neurological symptoms that stop dramatically when oral appliances are fitted. Dr. Stack is brilliant.

My TMJ MRI showed that my 'jaw' discs had slipped inward. We spoke with a great surgeon there, who has done the disc surgery correction for 25 years. He said that patients with typical TMJ pain have discs that have slipped forward. Those of us who have discs slipped inward have more neurological symptoms and less TMJ pain. Whew.

So the treatment involves surgical correction then oral appliances. I decided to try a local dentist ( west coast) due to distance, and was fitted with an oral appliance - no surgery. Just the appliance changed many symptoms - headache, facial pain, tingling etc in arms, tremor, sense of well - being. The local person just did not have the expertise, or my discs would not move into position. So, this did not work for me . There are a few dentists who are treating Parkinson's with oral appliances.

According to the great physiologists ( osteopath/ sacro-occiptal chiros) the jaw, upper neck, and cranial bones ( especially occiput) all reciprocate and work together - and their movement/function reciprocates with the pelvis. If one part is 'out' the whole system can be affected - especially for people with scoliosis, EDS ? Major blood vessels to the brain can be impinged.

So check out Dr. Brendan Stack and his videos - they are literally and figuratively 'jaw-dropping.'

Oh my, you have been around the world. My journey has been quite adventurous too. I had really bad TMJ at one point and went into orthodontics as an adult. Had to have them removed before we were finished because I had to have an emergency MRI of my head because I was having severe tremors and had a TIA. Found out I have a menigioma (type of brain tumor). Just a wait and see on it have to get it checked regularly. But didn't finish the orthodontics because the doc was afraid to put me under any more stress. With the EDS my teeth move very easily and I wear my retainer faithfully at night to keep them in place. They look pretty good. But wish we could have finished. Needed a little more tweaking. What we did helped my TMJ. When I started I couldn't even lie on one side and could barely eat.

My dentist just recommended I go see a local dentist who does braces and appliances for those with lax tendons and he also deals with bite appliances for apnea. ( which I also have). So your comment makes me want to check it out even more so. I do have issues with my neck and (like I said earlier - I broke my back). With EDS people develop arthritis at a young age. Mine started in my 20s. I have to support myself with pillows to sleep and keep myself perfectly straight or things will go out. To watch TV, I have to be straight in a chair. If I turn my head for any length of time my muscles cramp up and my neck goes out. Im super sensitive too. Like the princess and the pea. LOL.

Thanks for the info, I'll check it out.

Issie

 

[Issie]

If I remember correctly you can have EDS of the spine - or EDS in one area (pelvis) and not the other. It's not always found bodywide. Could you have EDS in the spine?

Haven't heard that. But some have hyper mobility syndrome which is very similar and that could be a possibility.

Issie

 

[Issie]

Oh Issie, what a journey!!! I have tried every kind of body work possible. And it is interesting that subtle changes in structure produced major symptom changes, including fatigue. At least this happened for the first 8 years or so post injury. Now, not such dramatic changes. A great chiro ( C.Curtis Buddingh- sacro-occiptal chiro) finally felt that it was my jaw (!) that was keeping instability in the entire structure. So I flew to Virginia to see a university- trained dentist/ researcher, Dr. Brendan Stack. Check out some of his videos on You Tube. These videos are very interesting. Profound neurological symptoms that stop dramatically when oral appliances are fitted. Dr. Stack is brilliant.

My TMJ MRI showed that my 'jaw' discs had slipped inward. We spoke with a great surgeon there, who has done the disc surgery correction for 25 years. He said that patients with typical TMJ pain have discs that have slipped forward. Those of us who have discs slipped inward have more neurological symptoms and less TMJ pain. Whew.

So the treatment involves surgical correction then oral appliances. I decided to try a local dentist ( west coast) due to distance, and was fitted with an oral appliance - no surgery. Just the appliance changed many symptoms - headache, facial pain, tingling etc in arms, tremor, sense of well - being. The local person just did not have the expertise, or my discs would not move into position. So, this did not work for me . There are a few dentists who are treating Parkinson's with oral appliances.

According to the great physiologists ( osteopath/ sacro-occiptal chiros) the jaw, upper neck, and cranial bones ( especially occiput) all reciprocate and work together - and their movement/function reciprocates with the pelvis. If one part is 'out' the whole system can be affected - especially for people with scoliosis, EDS ? Major blood vessels to the brain can be impinged.

So check out Dr. Brendan Stack and his videos - they are literally and figuratively 'jaw-dropping.'

Just watched most of the first video. I could see my symptoms in some of the people. My first "wrong" DX was Parkinson's. I have the tremors at times. Especially when I'm over tired or stressed. Would be wonderful if this would work for me.

Issie

 

[Merida]

Cort, Thank you for the sella syndrome information. The sacro-occipital chiros ( the great physiologists!) tell us that the sphenoid reciprocates with the tailbone. Yes, my tailbone is twisted, and Dr. Buddingh and my new osteopath tell me that my sphenoid is torqued as well. Since the sella turcica is part of the sphenoid I wonder if excessive sphenoid torque may flatten or distort the pituitary. I will ask.

Issie, OMG - all that you have been through. Meningioma! We had one case in support group. Yes, I have tremor too. Constant fine tremor in my jaw and tremor on the right side. This all began in the last 6-7 years. But my Mom had tremor as she got older - and it was not Dx as Parkinson's. She had never had significant injury. Yes, any tiny stress makes the tremor worse.

There is so much to this structural stuff. I have been dx by expert, very special neurosurgeon: small posterior fossa and very abnormal CINE MRI flow study. This doc was wonderful - spent 3 hours on first appt. Ordered a great urodynamic study that showed lower motor neuron bladder consistent with tethered cord syndrome. Previous urodynamic study at large famous medical center was 'crap' compared to the high tech/ important info that the neurosurgeon and his urologist found. Yet, this neurosurgeon has come under great criticism for his support of 'Chiari 0 malformation.'

He did not do tethered cord surgery but advised me that if I chose to have surgery that the TC surgery may take enough tension off the spinal cord and lower brain area that the CSF flow in that critical occiput/neck area might improve. So, I ended up having another 3 hour neurosurgery appt. with one of the few experts on tethered cord in the entire world. He was close to 80 at that time, and may have passed by now. Wow, what an incredible person and physician. I came to him with this dx of CFS/FM and he was genuinely worried about that - concerned for his career and reputation! How ever, he told me, that in his opinion, I demonstrated tethered cord syndrome. This can be congenital or acquired from scar tissue following a spinal trauma. Hmmm. Soon after this appt. the neurosurgeon retired and I did not have surgery.

So, all of the structural stuff is very important, but where do we even start to unravel this??????? How do we heal it??????? Is the big problem really due to a virus that took advantage of a weak blood-brain barrier? Do we attempt to 'fix' the jaw, the neck, the pelvis??? I got so boggled thinking about all of this that I left hard science almost completely and focused on healing. So, I learned how to dowse, trained in Reiki ( level 1), sought advice from medical intuitives (Cay Randall May is the real deal!), did all kinds of alternative stuff, and finally ended up studying shamanism/ qigong.

There is an important book, "Spirit Talkers" by William Lyon, retired anthropology professor. He spent his life studying North American Indian medicine powers. He discusses initially how modern physics may begin to explain the seemingly impossible feats of the great medicine men - Black Elk, Crazy Horse, Sitting Bull. The following chapters carefully document the reality of these medicine powers - recorded by early trappers and other people who had contact. Incredible stuff. So, at this point I am very confused, but also convinced there has got to be a way to get well - for all of us.

 

[Issie]

I do have cerebral tonsil drop. Not had anyone who knows about Chiari 0 look at my films. I do have signs of tethered cord with how I posture and walk. I understand it's pretty common for those with EDS to have these things. I can cope with it. Not bad enough to want surgery. But if an osteopath could do subtle manipulation and this appliance would work - THAT I would do.

BTW the manipulation he did in that video to me was more like Rolfing. Yes, I did that too. Was very painful. With my laxity - things didn't hold.

Issie

 

[Merida]

Issie, Yes, I tried Rolfing and had huge autonomic chaos response. Surgery is very scary for me, and I understand only about 50 per cent of Chiari surgeries are at all successful. My 'new' osteopath does no physical manipulation, but just holds the pelvis, neck, cranial areas.

During the first 2 sessions I have waves of jerking and shaking. My arm would fly up all by itself. There was another osteopath holding my ankles. What the $&!$@?? Then I read that QiGong masters sometimes need another person to "ground." He is confident that he can get me well. I went to him originally just for traditional manipulation. Didn't know he would do energy work. So, I will see what happens.

Issie, thank you for sharing such important info. Yes, correcting even some structural issues may be very helpful. Everyone's story gives important insight. I have observed that the CFS/ fM people are very caring, thoughtful, many gifts in various areas - including extra sensory things. I just can't understand WHY these structural issues even exist after millions of years of evolution. We are the only mammal with scoliosis. Of course, we are the only mammal with upright posture. Another book : The Downside of Upright Posture by Michael Flanagan, DC. He is a special neurological chiro, with extensive training and interest in physical anthropology and structure of mammalian/human skulls. He has a blog too.