Could we all be diagnosed with this?

[trip77]

medicalnewstoday.com/articl...

Just wondering wat all yer thoughts are on this.

[Painny]

I think I have all the symptoms, and thanks for sharing it, very informative 🙏🏻

[Blearyeyed]

I have a chronic Dysautonomia condition called Sinus Node Reentrant Tachycardia and suspected POTS but all people whom suffer from a chronic condition suffer from some level of autonomic nervous system dysfunction ( which is what Dysautonomia stands for).

People on certain types of medication like steroids definitely have acute dysautonomic symptoms .

People who have a severe infection ( like COVID) or injury that takes a long recovery also suffer from it temporarily.

It's basically what long COVID is.

It causes Chronic Fatigue.

My type of Dysautonomia needs medication and will always be part of my life , but the autonomic dysfunction that most Chronic Health sufferers have can be controlled or even reversed with the right sort of help.

The only reason you don't get told that you have it is because the Medical community learn so little about it.

Even the neurologists I have seen admitted they knew nothing about dealing with Dysautonomia , pretty terrible really , especially as the autonomic nervous system is half of the system they are meant to specialize in!

My Rheumy Physio , whom is actually interested in the condition , ask the Rheumy Consultants if there was any guidance they could give him about treating a patient with Fibro , EDS and Dysautonomia . Their answer , ' You'd know more than us , we wouldn't have a ( rude word) clue with that."

They wanted me to go to the only Dysautonomia clinic in the UK to be diagnosed but I could not be referred over the border from Wales. If I hadn't had a rare set of ECG results and pushed for proper testing for years ( educating them on the way) I may still be without a diagnosis now. It is frustrating really as with many of the things they class as uncommon , the tests to diagnose them are pretty simple and inexpensive . It just requires a commitment to some training and a willingness to learn.

Autonomic dysfunction as part of your illness can be worse than the effect of the illness itself , and if you have Chronic Dysautonomia , like myself , it can destroy your choices and be disabling.

It isn't suprising that Fibro produces dysautonomic symptoms. As a nerve condition , that impairs the signals for pain and other stimuli between the brain and body it can imbalance the way the autonomic nerves work because it is always sending the body into a ' fight or flight ' response.

I suppose , the only ray of Hope is that they will do more research into Dysautonomia , Chronic Pain and Chronic Fatigue now that they are trying to treat Long COVID patients , which hopefully, all Chronic Health sufferers might see the benefit of. I just wish it hadn't taken a global pandemic for that to happen!

Thanks for helping to build awareness of Dysautonomia by sharing this article , Bee

[Painny in reply to Blearyeyed]

I definitely have the condition posted by trip77. I have a long Covid, very low on vitamin D and you name it!

As you said sometimes doctors lag behind the medicine

[desquinn Partner Volunteer FMAUK Trustee in reply to Painny]

diagnosis by dr google is never a good idea. Symptom picking is also problematic as a cold and hayfever on paper symptoms could be confused. Patient presentation is not just a symptom list,

[Painny in reply to desquinn]

Firstly, I like calling Google Dr Google 😊

You read my mind…in fact I’m constantly googling things including myself. But I wouldn’t take anything I read as gospel. What you say is correct and in process of contacting my GP as some of my symptoms are like aphasia (after contacting Dr 👩‍⚕️ Google 😃)

Thanks for the insight and always taking the time to write to us 🙏🏻

[Carlt]

I'm afraid I wouldn't trust the contents of an article on a website that won't allow me to read it without disabling tracking cookies.

[trip77 in reply to Carlt]

Here's the article (copied and pasted)for you. It seems to be a genuine site to me.

Dysautonomia: Symptoms, types, and treatment

medicalnewstoday.com

Dysautonomia is the medical term for when the autonomic nervous system (ANS) does not work as it should. The symptoms vary widely, but they can include fainting, low blood pressure, and breathing problems.

The ANS is responsible for maintaining a constant internal temperature, regulating breathing patterns, keeping blood pressure steady, and moderating the heart rate. It also plays a role in pupil dilation, sexual arousal, and excretion. Conditions that cause dysautonomia usually affect these bodily functions.

According to Dysautonomia International, dysautonomias affect more than 70 million people worldwide. They come in many forms and can be primary or secondary. Degenerative diseases, such as Parkinson’s disease, can cause primary dysautonomia. Secondary dysautonomia results from an injury or another type of health condition.

This article looks at some of the different types of dysautonomia, including their symptoms and treatments.

Share on PinterestIrina Polonina/Stocksy

There are various types of dysautonomia, each of which has different symptoms. The symptoms can come and go, making them difficult to predict.

Examples of the symptoms that a person may experience include:

an inability to stay uprightdizziness, vertigo, and faintingfast, slow, or irregular heartbeatchest painlow blood pressureproblems with the gastrointestinal systemnauseadisturbances in the visual fieldweaknessbreathing difficultiesmood swingsanxietyfatigue and intolerance to exercisemigrainetremorsdisrupted sleep patternfrequent urinationtemperature regulation problemsconcentration and memory problemslow appetitesensory sensitivity, especially on exposure to noise and light

There are at least 15 types of dysautonomia. The most common are neurocardiogenic syncope (NCS) and postural orthostatic tachycardia syndrome (POTS).

NCS

NCS is the most common dysautonomia, affecting tens of millions of people worldwide. The main symptom is fainting, also called syncope, which can vary significantly in frequency. Some people may only experience it occasionally, whereas in others, it will be frequent enough to disrupt their life.

Gravity naturally pulls the blood downward, but a healthy ANS adjusts the heartbeat and muscle tightness to prevent blood from pooling in the legs and feet and to ensure blood flow to the brain.

NCS involves a failure in the mechanisms that control this, and the temporary loss of blood circulation in the brain causes fainting.

For people who faint only occasionally, avoiding known triggers can help. Possible triggers include:

dehydrationstressalcohol consumptionvery warm environments

Doctors may recommend medication, such as beta-blockers, or the implantation of a pacemaker to treat persistent or severe cases of NCS.

POTS

POTS affects 1–3 million people in the United States, about 80% of whom are female. It often affects people with an autoimmune condition.

The symptoms include:

lightheadedness and faintingtachycardia, which is an abnormally fast heart ratechest painshortness of breathstomach upsetshakingbecoming easily exhausted by exerciseoversensitivity to temperatures

POTS is normally a secondary dysautonomia. ResearchersTrusted Source have found high levels of autoimmune markers in people with the condition. In addition, those with POTS are more likely than the general population to have an autoimmune disorder, such as Sjögren’s disease or lupus.

Apart from autoimmune factors, conditions that doctors link to POTS or POTS-like symptoms include:

some genetic disorders or abnormalitiesdiabetesEhlers-Danlos syndrome, a collagen protein disorder that can lead to joint hypermobility and “stretchy” veinsinfections, such as mononucleosis, Lyme disease, extrapulmonary mycoplasma pneumonia, or hepatitis Ctoxicity from alcohol use disorder, chemotherapy, or heavy metal poisoningpregnancy, surgery, or other trauma to the bodyMultiple system atrophy

Multiple system atrophy (MSA) is rare, with experts estimating that it affects 2–5 people in every 100,000. It usually occurs after the age of 40 years. Doctors may mistake it for Parkinson’s disease because the early symptoms of the two conditions are similar.

In the brains of people with MSA, certain regions slowly break down — in particular, the cerebellum, basal ganglia, and brain stem. This leads to motor difficulties, speech issues, balance problems, poor blood pressure, and problems with bladder control.

MSA is neither hereditary nor contagious, and it is not related to multiple sclerosis. Researchers know little else about what may cause MSA. As a result, there is currently no cure and no specific treatment options.

However, people can manage certain symptoms through lifestyle changes and medications.

Autonomic dysreflexia

Autonomic dysreflexia (AD) can affect people with spinal cord injuries (SCIs). As a result, doctors class it as a secondary dysautonomia. The higher the level of the SCI, the greater the risk of AD. Up to 90%Trusted Source of people with cervical spinal or high thoracic SCIs could develop AD.

AD usually involves the irritation of the region below the level of a person’s injury. A range of conditions and injuries can bring on AD, including urinary tract infections and skeletal fractures.

In AD, the damaged spine prevents pain messages from reaching the brain. The ANS reacts inappropriately, producing severe spikes in blood pressure. The symptoms include:

headachesblotchy skina blocked nosea slow pulsenauseagoosebumps and clammy skin near the site of the injury

Most treatments aim to relieve the initial injury or irritation, thereby preventing further attacks of AD.

Baroreflex failure

This condition is rare and affects blood pressure.

The baroreflex mechanism is one way in which the body maintains a healthy blood pressure. Baroreceptors are stretch receptors situated in important blood vessels. They detect stretching in the artery walls and send messages to the brain stem.

If these messages fail, blood pressure can become too low when a person is resting, or it can rise dangerously high during times of stress or activity.

Other possible symptoms include headaches, excessive sweating, and an abnormal heart rate that does not respond to medication.

The treatment for baroreflex failure involves medications to control heart rate and blood pressure, as well as interventions to improve stress management.

Diabetic autonomic neuropathy

Diabetic autonomic neuropathy is a potential complication of diabetes. The condition affects the nerves that control the bladder, digestive system, heart, genitals, and other organs.

The symptoms includeTrusted Source:

resting tachycardia, which is a fast resting heart rateorthostatic hypotension, or low blood pressure when standingconstipationbreathing problemsgastroparesis, which refers to food not passing correctly through the stomacherectile dysfunctionsudomotor dysfunction, or irregularities with sweatingimpaired neurovascular function“brittle diabetes,” which is characterized by frequent episodes of hyperglycemia and hypoglycemia

The treatment for diabetic autonomic neuropathy focuses on the careful management of diabetes. In some cases, doctors may recommend treatments to control specific symptoms.

Familial dysautonomia

Familial dysautonomia (FD) is a very rare type of dysautonomia, affecting predominately people of Ashkenazi Jewish descent.

The symptoms, which typically appear in infancy or childhood, include:

feeding difficultiesslow growththe inability to produce tearsfrequent lung infectionsdifficulty maintaining body temperatureprolonged breath-holdingdelayed development, including walking and speechbed-wettingpoor balancekidney and heart problems

The condition can lead to a dysautonomic crisis, which involves rapid fluctuations in blood pressure and heart rate, dramatic personality changes, and complete digestive shutdown.

Familial dysautonomia is a serious condition that is usually fatal. There is no cure. However, the incidence of FD is gradually decreasing over time due to prenatal screening and testing.

Treatment for dysautonomia

There is no cure for primary dysautonomias. However, the symptoms of secondary dysautonomias may improve when doctors treat the underlying condition.

Treatment aims to reduce symptoms enough that the individual can start a program to strengthen and physically condition their body. This can help them balance the effects of the ANS not working as it should.

The treatment plan depends on the type and specific details of each person’s combination of symptoms. A doctor must personalize the treatment, but it will often involve physical therapy, exercise therapy, and counseling to help a person with dysautonomia cope with the lifestyle changes that accompany the condition.

Various doctors, including cardiologists and neurologists, may help with a treatment plan.

An individual may require medication to reduce some of their symptoms, and the prescribed course may change over time to accommodate any physical changes that occur.

Doctors may also advise that people with the condition drink 2–4 liters of water per day and increase their daily intake of salt to 4–5 grams. People, especially younger individuals, should avoid caffeine and drinks high in sugar.

An individual should speak with a doctor about the course of treatment that is best for them.

There are no alternative treatments that can cure dysautonomias, but complementary therapies may help people manage and cope with their symptoms. People may benefit from:

Mindfulness techniques: People with dysautonomia may experience anxiety. Adding calming mindfulness practices to the daily routine may help. These could include yoga, meditation, and breathing exercises.Cognitive behavioral therapy (CBT): Therapists use this technique to help people overcome patterns of thinking that can contribute to anxiety, worry, and stress.Cannabidiol (CBD): This compound comes from the hemp plant, but unlike cannabis itself, it does not cause a “high.” A small 2017 study of 12 females with dysautonomic syndrome following human papillomavirus (HPV) vaccination took CBD over a 3-month period. At the end of the study, the eight participants who completed the trial reported significantly reduced body pain and improved physical, vitality, and social functioning scores.

Although early research on CBD is promising, further studies are necessary to confirm the benefits, as this trial was extremely small and included only female participants aged 12–24 years.

What causes dysautonomia?

Dysautonomias are malfunctions of the autonomic nervous system that can happen for many reasons. Primary dysautonomias occur due to genetic or degenerative diseases that affect the brain and nervous system. Secondary dysautonomias happen as a result of an injury or another type of condition.

Conditions that can lead to secondary dysautonomia include:

diabeteslupusrheumatoid arthritisParkinson’s diseaseceliac disease

Scientists believe that autonomic dysfunction may also be a factor in long COVID, a condition that can occur after someone has COVID-19. A 2021 articleTrusted Source notes that many people with long COVID have symptoms similar to those of POTS.

Just as every person’s life is unique, everyone’s experience with dysautonomia is, too. Dysautonomia is a complex set of conditions, and the effects they have on a person’s life vary greatly depending on individual circumstances.

About 25% of those with POTS have severe symptoms that prevent them from working, sleeping, and spending time with friends and family. Some people may be unable to do much physical activity.

Dysautonomia can also affect a person’s mental health. For example, depression and increased anxiety are common among those with POTS.

Dysautonomia has a complicated relationship with other conditions. These include:

Posttraumatic stress disorder (PTSD): In PTSD, psychological trauma causes the ANS to stop functioning as it should, causing mental and physical symptoms that have a significant crossover with dysautonomia.Obstructive sleep apnea (OSA): When someone has OSA, their breathing repeatedly stops and starts while they sleep. A 2019 studyTrusted Source notes that people with OSA have ANS alterations but concludes that more research is necessary to understand the link.Vitamin deficiencies: Experts believeTrusted Source that vitamin D may play a role in autonomic disorders. Although they are unsure of the exact mechanism, it seems that low vitamin D levels can cause some of the symptoms that doctors see in people with dysautonomia.

The outlook for people with dysautonomia depends entirelyTrusted Source on the specific type of condition. The term covers a wide range of conditions that vary in severity.

However, experts at leading medical institutions are carrying out revolutionary research that may offer hope to people experiencing dysautonomia.

According to some estimates, with commitment, appropriate medical treatment, and lifestyle management, the majority of those with youth-onset dysautonomia should recover or improve significantly by their mid-20s. However, some individuals’ symptoms may return when their body is under stress, such as during pregnancy or menopause.

[JayCeon]

Not all, but perhaps a few more than we realize.

From what I read I personally don't fit the criteria for dysautonomia, altho generally I do feel "out of balance".

Another "new one" which I do have is Mast Cell Activation Syndrome, MCAS, an immune system overreaction, which partly has to do with histamine. Proponents (like Afrin) say "fibro" may be part of "MCAS" and also that Long COVID is actually MCAS.... Again it's the question where the overlaps really are.

I'd assume they're possible co-morbidities. And whilst they are in the process of being defined some people will propose that they include a lot more than they actually can answer for. The MCAS experts are definitely no fibro experts, so I think the people touting these conditions may be (= are) jumping the gun, but this will hopefully lead to more attention and getting things sorted faster.

[desquinn Partner Volunteer FMAUK Trustee]

not all of us thats for sure but the body is limited in how it can express itself when it is not behving itself. So comparing symptom lists are problematic as physical exams and patient history are important as well. Just like you could make a case for the previous articles aligning with SFN had some overlap with fibro. But I believe measuring Orthostatic Blood Pressure will rule it out so should be screened in most people where the health proffesional believes it is worth ruling out.