EDS Frequently Asked Questions (FAQ)

The journey to diagnosis for the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD) is often a long and complicated one if not identified early. Poor awareness and delay of being recognised of the conditions amongst medical practioner professionals means that it can go undiagnosed and unrecognized.

EDS / HSD is NOT & NEVER a life threatening disorderness, not a LINEAR nor a PROGRESSIVE phenomenon.  The request is only –

1. To have early diagnosis and NOT to delay any symptoms if seen or observed

2. To have EDS types confirmed, also the POTS subtypes as earliest

3. To have right DOCTORS / SPECIALISTS / HEALTH PROVIDERS as earliest

4. To have right medicines, supplements, complementary therapies, diet & Exercises

5. The most three important things are – DIET, LIFESTYLE and EXERCISES as the key for success has to be understood by any individual.

6. EDS / HSD comorbidities is NOT nor NEVER an extreme sinerio of its comorbidities viz – CCI, Headache, Migraine’s, Gut, Pelvic, Whole Body Pain, TMJ and others 15-20 issues.

7. Any EDS / HSD remarkable issues person does not have all 15 – 20 comorbidities but mainly 3 – 5 comorbidities comprising some of POTS, MCAS, GUT, CCI, WHOLE BODY PAIN and remaining in very less percentages.

8. EDS / HSD is treatable and manageable symptomatically. 

The EDS-IF has put together a list of frequently asked questions about EDS and HSD. The questions have been compiled based on the questions raised almost every day. The most FAQ which the EDS / HSD remarkable issues people have are -- 

Q 1: How do I know if I am having EDS / HSD? 

EDS-IF: Do perform SELF ASSESSMENT by going through “GCG - 100 QUESTIONNAIRES” analysis. Therefore, having 15 - 20% YES responses on “90-CLINICIAL QUESTIONAIRES” would certainly qualify you in having EDS / HSD but having more YES responses will definitely classify your EDS Types & POTS sub-types.  Link - https://sites.google.com/view/eds-if/eds-resources-references?authuser=0   

Q 2: Is GENETIC TEST recommended in knowing the EDS and it's types?

EDS-IF: Yes, GENETIC TEST is highly recommended in knowing your EDS and it's syb-types. Link - https://sites.google.com/view/eds-if/eds-genetic-tests?authuser=0    

Q 3: Is Blair upper cervical chiropractor recommended?

EDS-IF: Chiropractic manipulations which involve twisting, cracking, or forceful thrusts are somehow dangerous for hypermobile joints. They can lead to severe injury, nerve damage, or worsen ligament laxity because tissue fragility and joint instability are primary features of EDS. Not sure if it’s recommended for EDS / HSD remarkable issues people.

Q 4: Is any types of INVASIVE or SURGERY procedural recommended?

EDS-IF: No, EDS / HSD remarkable issues people should strictly avoid any invasive procedures.

Q 5: I need to get my wisdom tooth out, but needed to know the EDS/HSD specific dental suggestions?

EDS-IF: The EDS / HSD remarkable issues people do requires special care due to tissue fragility, joint hypermobility, and anaesthesia resistance when getting a wisdom tooth extracted. One must clearly share that you are having EDS / HSD. The guidance needed are –

• The doctor should be aware about EDS / HSD protocol and also that you are having EDS / HSD or EDS subtype

• The 3D scans of your mouth / jaw should be taken

• The doctor should have proper procedural plan / chart designed for you

• The doctor should be informed that you are extremely allergic to the antibiotic / penicillin / certain medicine.

• The EDS / HSD people sometime they do have anaesthesia resistance to standard anaesthetics so alternative standard anaesthetics must be tried. The doctor should know which anaesthetics can work for longer duration.

• You should not experience insufficient numbness during dental procedures, even after repeated doses of anaesthesia.

• The jaw can be highly susceptible to subluxation or dislocation during prolonged procedures so proper care with shorter opening time and shorter appointments time should be adopted. The procedural should be slow.

• Blood tests to measure coagulation and bleeding time should ideally be performed prior to the extraction to prevent excessive post-surgical bleeding.

• Soft food diet (mashed potatoes, yogurt, etc) for the first couple of days should be adopted.

• Short Follow up with the doctor should be there

Please consult an Orthodontists who has experience with connective tissue disorders before booking your procedural.

Q 6: I belong to X city of INDIA, how do I know the SPECIALISTS of my City / STATE / UT?

EDS-IF: Please browse your State / UT "EDS - States & Union Territories" page. Link - https://sites.google.com/view/eds-if/eds-specialists-states-union-territories  

Q 7: How do I get an information about MEDICINES, SUPPLEMENTS, DIET needed towards EDS / HSD?

EDS-IF: Please browse the "EDS - Medicines | Supplements | Complementary Therapy | Management Treatments | Diet" page. Link - https://sites.google.com/view/eds-if/eds-medicines-supplements-compl-therapy-diet-mngt-treatment   

Q 8: How do I get an information about Exercises and Functional Rehabilitation needed towards EDS / HSD?

EDS-IF: Please browse the "EDS - Exercises and Functional Rehabilitation " page. Link - https://sites.google.com/view/eds-if/eds-exercises-functional-rehabilitation

Q 9: I have EDS / HSD confirmed clinically and through Genetic Test. Can I apply for PHYSICAL DISABILITY CERTIFICATE (PwD) in INDIA?

EDS-IF: Yes, Ehlers Danlos Syndrome (EDS) comes under locomotor disability. The PHYSICAL DISABILITY CERTIFICATE (PwD) can be availed by any EDS remarkable issues person who is citizen of India. Link - https://sites.google.com/view/eds-if/eds-pwd-person-with-disability-certificate 

Q 10: I have EDS / HSD confirmed so what are the Pathological Analysis (BLOOD, URINE & STOOL) can be done?

EDS-IF: Yes, pathological analysis is highly important in knowing minerals, vitamins, nutrients and blood protein deficiencies. Testing helps identify deficiencies early and allows for targeted treatment. Please refer the "EDS - Pathological Analysis" page. Link - https://sites.google.com/view/eds-if/eds-pathological-analysis  

Q 11: I have EDS / HSD confirmed so what kind of mattress and pillow should I adopt as preventive measure towards not having NECK and POSTURAL PAIN?

EDS-IF: One can try having cervical / wedge / modular pillow to support your neck properly, fluff bed / Natural latex mattresses to properly support and generate pressure relief for your body, and finally knee pillows for your legs.

Q 12: I have EDS / HSD confirmed so what are Vagus Nerve / Vagus Tone exercises?

EDS-IF: Please refer EDS-IF page of Exercises and Functional Rehabilitation for much detail - https://sites.google.com/view/eds-if/eds-exercises-functional-rehabilitation .

The Vagus Nerve / Vagus Tone Exercises can be done as – 

1. Massage the side of neck by both hands or put some ice on both sides of neck for few seconds

2. Diaphragmatic breathing (Deep Breathing)

3. Anulom Vilom Pranayama (Alternate Nostril Breathing)

4. Inhale & Exhale (HVR)

5. Laughter 

6. Meditation

P.S: Always start with low count and slow procedures.

Q 13: I have EDS / HSD confirmed so how to get relieve from POTS in our daily life?

EDS-IF: Kindly follow a weird but effective POTS trick:

FIRST APPROACH - Elevate the head of your bed by 4–6 inches. Not just your pillow — the entire bed frame.

Why it works:

When you sleep flat, your body shifts blood toward the chest and head, tricking your kidneys into thinking you’re fluid-overloaded.

This leads to more salt and water being lost overnight — making you wake up dehydrated and more symptomatic.

How to do it:

Put 4–6 inch risers or sturdy blocks under the legs at the head of the bed. Or use a long wedge under the mattress to create a gentle incline.

The key is to tilt the whole body — not just your head.

It’s simple, safe, and can make mornings a lot easier. Try it!!

SECOND APPROACH - Also, when you wake up from sleep be it anytime but particularly after having prolonged sleep in the night time or when you are watching TV for long hours or during afternoon taking an hour nap or getting up from supine position than kindly flex your fingers and legs (viz. upper and lower limbs), elbows, knee joints for around 5 - 6 times or slightly 5 - 10 times, secondly sit up in upright position but rather directly standing on your feet and perform and flex your arms and legs again and than stand or get out from the supine position.

This would improve blood circulation to your brain, increase your preload by doing this two things and finally avoid orthostatic hypertension as soon as you stand.

Before you sleep please make sure that you drink enough quantity of water (at least a glass of water) even if you have to urinate in between of your sleep do urinate and again drink a glass of water simply to avoid dehydration. One should never be dehydrated. 

 
Please undertsand this is not an exercise but a routine procedure and this may get you rid from sudden fatiquness, dizziness, bluisness in the legs, and lower BP. By doing this you are allowing heart to pump blood in rapid amount to the brain and not having momentum tachycardia situation. If you want to avoid tachycardia than you should avoid hypertension.

Q 14: I have EDS / HSD and sometimes my hands get swollen. What should I do?

EDS-IF: Please follow "Dislocation and Sub laxation" section of "Exercises and Functional Rehabilitation" page - https://sites.google.com/view/eds-if/eds-exercises-functional-rehabilitation  

Q 15: Is Red light Therapy (Photobiomodulation) or Laser Therapy or CLASS IV Therapy helpful for chronic pain treatment. What should I do?

EDS-IF: Red light Therapy (Photobiomodulation) is complementary, non-invasive tool to help manage associated symptoms like chronic pain, joint inflammation, slow tissue healing, and fatigue. It works at NEAR INFRA RED (NIR 630–700 nm) waves but finally it's a radiation. 

Emerging research suggests that Red Light Therapy (RLT) may offer benefits for individuals managing Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). 

Laser Therapy or CLASS IV Therapy (NIR 700–1000 nm) is more stronger, coherent than RLT.

One can use either but please discuss with your Dermatologists, Physiotherapists, or Pain Management Specialists. Both techniques are available in INDIA'S major HOSPITALS.

Q 16: Is ear effusion related with Ehlers Danlos Syndrome. What should I do?

EDS-IF: Yes, ear effusion is related to Ehlers-Danlos Syndrome (EDS). It is primarily caused by Eustachian Tube Dysfunction (ETD), where weakened connective tissues and structural laxity prevent the tubes from opening and closing properly. This traps fluid in the middle ear. This condition can cause discomfort and hearing problems, yet it remains under-recognized.

ETD in EDS / HSD remarkable issues people is mainly due to abnormal collagen structure. Collagen provides strength and flexibility to tissues, including those in the ear. When collagen is defective, the Eustachian tubes may collapse or fail to open properly, leading to chronic problems. The tubes may remain partially closed or collapse easily, preventing proper ventilation of the middle ear.

Additionally, EDS / HSD people may often have other related issues such as temporomandibular joint (TMJ) dysfunction or sinus problems, which can worsen ear symptoms. The combination of these factors makes managing ETD more challenging.

Recognizing ETD symptoms early can help manage the condition and improve quality of life. Here are the most common signs to watch for:

• Ear Fullness or Pressure - Many people describe a sensation of fullness or pressure in one or both ears. This feeling can worsen with changes in altitude, such as flying or driving through mountains.

• Muffled or Reduced Hearing - ETD can cause temporary hearing loss or muffled sounds because the middle ear pressure is not balanced.

• Ear Pain or Discomfort - Some individuals experience mild to moderate ear pain, especially when swallowing or yawning.

• Tinnitus - Ringing or buzzing sounds in the ear may occur due to pressure changes or fluid buildup.

• Frequent Ear Infections - Dysfunction of the Eustachian tubes can lead to fluid accumulation, increasing the risk of infections.

• Popping or Clicking Sensations - Some people notice popping sounds when swallowing or yawning as the tubes try to open.  

Please consult respective OTOLARYNGOLOGIST as mentioned in EDS SPECIALISTS page of STATES or Union Territories. 

Q 17: Is patellar chondromalacia or a superficial cartilage injury (chondral delamination) of the kneecap common with EDS / HSD? 

EDS-IF: Yes, Patellar chondromalacia (softening/damage to the kneecap cartilage) and chondral delamination (superficial cartilage injuries) mostly common in Hypermobile Ehlers-Danlos Syndrome (hEDS) and Classical Ehlers-Danlos Syndrome (cEDS) as the research paper suggest.

Studies indicate that up to 81.5% of patients with hypermobile EDS (hEDS) report knee pain, and patellar instability is frequently reported, leading to chronic knee issues.

Kindly undergo your GENETIC TEST - WES and do visit Orthopedic specialist or Musculoskeletal/Orthopedic Physical Therapist but please avoid any invasive procedural.

Also, Patellar chondromalacia (cartilage softening) and Superficial chondral delamination (separation of cartilage from bone) are commonly associated with several other syndromes like - Patellofemoral pain syndrome (PFPS), Miserable Malalignment Syndrome, Patellar Maltracking/Dysplasia and Plica Syndrome so knowing about having with EDS / HSD is highly important.

Q 18: I have BRAIN FOG mainly during the day. I do have POTS but not MCAS of rashes / mashes and no CCI and my sleep is also normal. I do have normal hydration, salt intake and do take medicines like - Ivabradine, Midodrine, Propanolol & Famotidine but still I don't see any improvement in my BRAIN FOG. What could be the better solution in managing my BRAIN FOG during the day period? 

EDS-IF: BRAIN FOG in you seems completely orthostatic and gravity-dependent or due to MCAS but not through other EDS comorbidities. The medicines which can help are - Modafinil/Armodafinil, Methylphenidate, Fexofenadine and Low-Dose Naltrexone (LDN). 

Especially, medicines like - Modafinil/Armodafinil (low dose), Methylphenidate (low dose) taken during the day time can improve BRAIN FOG.

CAUSES:

1. You do not have mashes or rashes but MAST cells lining the blood vessels in the brain can release histamine and cytokines, disrupting the blood-brain barrier and causing brain fog. 

2. POST MEAL - Eating a standard meal forces a massive amount of blood to redirect to the digestive tract (splanchnic pooling). This causes a temporary drop in blood flow to the brain, inducing severe post-meal brain fog. 

REMEDY:

1. The moment you feel cognitive slowing, lie down completely flat on your back (ideally with your legs slightly elevated on a pillow) for 15 to 20 minutes.

2. Pyridostigmine (Mestinon) dose needs to be adjusted, or if switching to Mestinon Timespan (a long-acting version) would help. Mestinon works continuously on the parasympathetic nervous system to maintain blood vessel tone all day long, preventing the constant pooling that Midodrine's short half-life can leave behind.

3. Armodafinil (Nuvigil): This is the longer-lasting cousin of Modafinil. A single dose in the morning provides a steady, 12-to-15-hour release of wakefulness-promoting agents. It directly targets the brain's executive functions and processing speed, helping to override the constant, gravity-induced cognitive lag without causing the heavy heart rate spikes of traditional ADHD stimulants. Initially a low dose trial is recommended.

4. Low-Dose Naltrexone (LDN) for Constant Glial Activation - Taken once daily (usually at night), LDN (1.5mg to 4.5mg) works continuously over 24 hours to calm these inflamed brain cells. If your fog is driven by this low-grade neuroinflammation, it can take 4 to 8 weeks to lift, but it provides a permanent baseline shift rather than a temporary fix.

P.S: Please consult respective CARDIOLOGIST / SPECIALISTS / HEALTH CARE PROVIDERS as mentioned in EDS SPECIALISTS page of STATES or Union Territories before undergoing above recommendation on BRAIN FOG. The information here is for educational and informational purposes only and does not constitute any medical advice, diagnosis, or treatment.  

Q 19: How much is boiled DESI EGG good for Ehlers Danlos Syndrome (EDS) people than commercial farm eggs?

EDS-IF:

Q 20: How can SATTU (made from roasted Bengal gram (chana), a pure SATTU) drink be beneficial for Ehlers Danlos Syndrome (EDS) people?

EDS-IF:

Q 21: Does HISTAMINE causes BRAIN FOG in Ehlers Danlos Syndrome (EDS) people?

EDS-IF: Yes, excess histamine is a common trigger for brain fog in people with Ehlers-Danlos syndromes (EDS). This occurs primarily because EDS is frequently co-morbid with Mast Cell Activation Syndrome (MCAS) and autonomic dysfunction like POTS.  

The  WHY?

• Neuroinflammation: When mast cells become overactive, they release excessive amounts of histamine and other inflammatory mediators. This excess histamine can easily cross the blood-brain barrier, activate the brain's resident immune cells (microglia), and cause neuroinflammation.  

• Neurotransmitter Imbalance: Histamine also acts as a neurotransmitter in the brain. An overload of histamine disrupts the balance of other crucial neurotransmitters like dopamine, glutamate, and GABA. 

• Reduced Cerebral Blood Flow: EDS patients often deal with poor blood circulation to the brain due to dysautonomia (e.g., blood pooling in the legs upon standing). When combined with systemic inflammation, the brain suffers from insufficient blood and oxygen supply, resulting in severe fogginess. 

Q 22: Why do people with Mast Cell Activation Syndrome (MCAS) often react poorly to medications? Is the additives (known as excipients or inactive ingredients) present in medicine does trigger reactions that make it feels like every medication is the problem? 

EDS-IF: Fluoroquinolones significantly affect Mast Cell Activation Syndrome (MCAS) and are widely considered high-risk medications for mast cell patients. This class of antibiotics—which includes ciprofloxacin (Cipro), levofloxacin (Levaquin), and moxifloxacin (Avelox)—can directly force mast cells to release histamine and other highly inflammatory chemicals, potentially causing severe systemic flares. 

What makes it even harder is that most people with MCAS are doing everything right. They don’t drink. They don’t smoke. They try to exercise, eat clean, take the right supplements, and get enough sleep. Most are limited to just a handful of safe, whole foods. But still their MCAS flare doesn’t slow? 

Does MCAS flare in the early morning hours, releasing histamine and other chemicals? How to manage? 

It’s well known that MCAS can cause widespread symptoms like pain, inflammation, GI distress, bladder irritation, and neurologic flares. When symptoms affect multiple systems or don’t respond to conventional treatment, it’s worth asking: could mast cells be part of the picture? 

Also, Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS) share a strong, well-documented clinical relationship. They frequently co-occur, meaning a person diagnosed with one condition has a significantly higher chance of developing the other. Mast cells reside in high densities within connective tissue, the structural laxity of hEDS is thereby thought to structurally destabilize the mast cells, causing both POTS and MCAS to manifest together.

MCAS and POTS are two key "evil triad" which bothers hypermobile Ehlers-Danlos Syndrome (hEDS) comorbidities a lot.

Probably, when treating a patient with Mast Cell Activation Syndrome (MCAS), doctors must follow a clinical philosophy of "low and slow" introduction, rigorous pre-medication protocols, and safer alternative selection for EDS / HSD remarkable issues people.

📍DISCLAIMER:

The above FAQ information should only be taken or practiced under the guidance and advice of a doctor or qualified healthcare professional.  The information here is for educational and informational purposes only and does not constitute any medical advice, diagnosis, or treatment. 

Please consult qualified SPECIALIST / HEALTH PROVIDER / DOCTORS for any suggestion, trail, implementation and any questions regarding a medical condition. Please never disregard professional medical advice or delay seeking it because of having an information found here.