FAQ’s
hEDS
h = Hypermobility (or hypermobility spectrum disorder)
EDS = Ehlers Danlos Syndrome
h + EDS = Hypermobile Ehlers Danlos Syndrome (hEDS)
What is Hypermobility
Hypermobility spectrum disorder (HSD), related to earlier diagnoses such as hypermobility syndrome (HMS), and joint hypermobility syndrome (JHS) is a heritable connective tissue disorder that affects joints and ligaments. Different forms and sub-types have been distinguished, but it does not include asymptomatic joint hypermobility, sometimes known as double-jointedness.
Symptoms can include the inability to walk properly or for long distances, and pain in affected areas. Some people with HSD have hypersensitive nerves and a weaker immune system. It can also cause severe fatigue and some cases cause depressive episodes. It is somewhat similar to other genetic connective tissue disorders such as Ehlers–Danlos syndromes.
Directly from Wikipedia
What is EDS
Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that are generally inherited and are varied both in their genetic causes and how they affect the body. The most common characteristics are joint hypermobility (joints that move more than normal), skin hyperextensibility (skin that can be stretched more than normal), and tissue fragility (easy bruising, wounds taking longer to heal and scars that heal abnormally).
Ehlers-Danlos Syndromes are currently classified into 13 subtypes (as of 2017) but by far the most common types are Hypermobile (hEDS) and Classical (cEDS). Each subtype has a set of clinical criteria that help guide with diagnosis.
An individual’s experience with EDS is personal in terms of symptoms and severity and may not necessarily be the same as another person’s experience. Diagnostic criteria exist to help distinguish EDS from other connective tissue disorders, and one type of EDS from another. There are many more possible symptoms for each EDS type than are listed in the official criteria. The symptoms listed here are the most common ones.
Directly from Ehlers-Danlos NZ
Why the zebra?
People with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often identify themselves as zebras.Education and AwarenessMedical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.People with rare and chronic diseases spend years searching for answers:“But you look normal”“You’re too young to have so many problems”“You’re too old”“You can’t have that, it’s too rare”“No one knows what that is”The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, and different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD, reducing the time to diagnosis, and improving pathways to care.
– Ehlers-Danlos.com
Sublax/subluxation
A subluxation is an incomplete or partial dislocation of a joint.According to the World Health Organization (WHO), a subluxation is a “significant structural displacement”, and is therefore always visible on static imaging studies, such as X-rays.
A subluxation of a joint is where a connecting bone is partially out of the joint. In contrast to a luxation, which is a complete separation of the joints, a subluxation often returns to its normal position without additional help from a health professional. An example of a joint subluxation is a nursemaid’s elbow, which is the subluxation of the head of the radius from the annular ligament. Other joints that are prone to subluxations are the shoulders, fingers, kneecaps, ribs, wrists, ankles, and hips affected by hip dysplasia. A spinal subluxation is visible on X-rays and can sometimes impinge on spinal nerve roots, causing symptoms in the areas served by those roots. In the spine, such a displacement may be caused by a fracture, spondylolisthesis, rheumatoid arthritis, severe osteoarthritis, falls, accidents and other traumas. This is common in Ehlers–Danlos Syndrome.
From Wikipedia
MCAS
Mast Cell Activation Syndrome.
MCAS is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing and severe diarrhea. High levels of mast cell mediators are released during those episodes.
The treatment of acute episodes should follow the recommendations for treatment of anaphylaxis, starting with epinephrine, if indicated by the severity of symptoms. Antihistamines, such as the first generation histamine type 1 receptor blockers diphenhydramine and hydroxyzine, can be effective for itching, abdominal discomfort and flushing, but their use may be limited by side effects (sleepiness). Second generation antihistamines, including loratadine, cetirizine and fexofenadine, are preferable due to fewer side effects.
Coeliac
An immune reaction to eating gluten, a protein found in wheat, barley and rye. Over time, the immune reaction to eating gluten creates inflammation that damages the small intestine’s lining, leading to medical complications. It also prevents absorption of some nutrients (malabsorption). The classic symptom is diarrhoea. Other symptoms include bloating, wind, fatigue, low blood count (anemia) and osteoporosis. Many people have no symptoms. The mainstay of treatment is a strict gluten-free diet that can help manage symptoms and promote intestinal healing.
Hypertriglyceridemia
A high level of a certain type of fat (triglycerides) in the blood.Elevated triglycerides may contribute to pancreatitis or hardening of the arteries. This increases the risk of stroke, heart attack and heart disease.Most often, there are no symptoms of having elevated triglycerides.Weight loss, a healthy diet, exercise and restricting alcohol are recommended. Treatment to reduce triglyceride levels may include fish oil, vitamin B-3 (niacin) or other medication.
Requires a medical diagnosis.
Most often, there are no symptoms of having elevated triglycerides.
POTS
Postural orthostatic tachycardia syndrome
POTS is a condition that causes your heart rate to increase rapidly when you sit or stand up suddenly.
What causes POTS?
Sometimes the cause of this problem with your autonomic nervous system is not known. Sometimes it develops suddenly after a viral illness or traumatic event, or during or after pregnancy.
Other known causes are:
- hypermobile Ehlers-Danlos syndrome
- Chronic fatigue syndrome
- an underlying condition such as diabetes, amyloidosis, sarcoidosis, lupus, Sjögren’s syndrome or cancer
- poisoning with alcohol or certain metals
- inheriting a gene that causes too much of the ‘fight or flight’ hormone noradrenaline to be produced.
What are the symptoms of POTS?
You may get symptoms almost immediately or a few minutes after sitting up or standing. Lying down may relieve some symptoms.
Typical symptoms of POTS include:
- heart palpitations (feeling your heart beating or racing)
- dizziness or lightheadedness
- fainting (passing out)
- problems with thinking, memory and concentration – this combination of symptoms is often called ‘brain fog’
- shaking and sweating
- weakness and fatigue (tiredness)
- headaches
- poor sleep
- chest pain
- feeling nauseated (sick)
- shortness of breath
- a sense of panic.
Some people notice that feeling hot, eating a big meal, strenuous exercise, a hot shower or having a menstrual period can make their symptoms worse.Treating an episode
If you suddenly feel faint or dizzy, try to counter the fall in blood flow by:
- lying down and, if you can, raising your legs
- crossing your legs in front of each other while standing
- rocking up and down on your toes
- clenching your buttocks and tummy muscles
- clenching your fists if you can’t lie down.
Taking steps to prevent symptoms developing
You may be able to reduce your symptoms in the long term if you:
- drink plenty of fluids until your pee is pale yellow
- keep active, but pace yourself and choose your exercise carefully – swimming, rowing, lower limb resistance training, walking, jogging and Pilates can help you keep fit and build muscle (strong calf muscles should help pump blood back to your heart)
- raise the head end of your bed, so you’re not sleeping fully flat
- try wearing support tights or other forms of compression clothing, to improve blood flow in your legs
- avoid long periods of standing, particularly in the heat
- avoid long, hot showers
- cross your legs and draw up your knees if sitting for long periods of time
- get up slowly after lying down and sit for a while before standing
- avoid drinking lots of caffeine or alcohol
- add more salt to your diet through the day (provided you don’t have high blood pressure or kidney or heart disease)
- use electrolyte drinks in hot weather or before sport, when you may sweat a lot.
CFS/ME
Chronic fatigue syndrome/myalgic encephalomyelitis
(CFS) is a complex illness that affects many systems of your body, particularly the nervous and immune systems. People with CFS experience extreme tiredness that doesn’t go away with rest and can’t be explained by other causes.
The cause of CFS is not yet fully understood, but it is likely that several factors contribute to its development. There are changes in the immune system and body chemistry.CFS is usually triggered by a viral infection, such as glandular fever or influenza, but any infection may be the trigger. It is likely that the potential for getting CFS is genetic and runs in families.
Other factors that may contribute include:
- emotional or physical distress
- not enough sleep
- hormonal imbalance
- over-exercising.
What are the symptoms of chronic fatigue syndrome?
People with CFS experience overwhelming physical and mental fatigue (tiredness). This is different to the tiredness that well people experience after strenuous exercise or a day’s work. CFS-associated fatigue can be debilitating and does not readily get better with rest.
Other common symptoms include:
- poor memory or concentration
- sore throat
- tender lymph nodes
- muscle pain
- multiple joint pain without joint swelling or redness
- headaches of a new type, pattern or severity
- unrefreshing sleep
- tiredness that can last for more than 24 hours after physical or mental effort.
Some people also report a range of other symptoms such as nausea, loss of appetite, irritable bowel syndrome (IBS), bloating, diarrhoea, irregular heartbeat, chest pain, jaw pain, night sweats, increased sensitivity to alcohol or medication, chronic cough, dizzy spells or dry eyes.
The severity of symptoms can vary from day to day, or even within a day.