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Which are the symptoms of Ehlers Danlos?
See the worst symptoms of affected by Ehlers Danlos here
The worst symptoms of this disease, in specifically the classical and hypermobile (most common) categories, are the intense joint pain, hyper-mobility, connective tissue dysfunctions, and POTS (a disease that goes hand-in-hand with EDS).
Posted Apr 11, 2017 by Montana 1670
The widespread pain is the worst for me.
Posted May 10, 2017 by April 100
I would get rid of the chronic pain and fatigue and the joint instability.
Posted May 10, 2017 by stairphobe 3070
Well, this is a weird question because I will have to say that the worst symptoms are those that are life threatening. So, pretty much, all those symptoms that are more common in EDS type Vascular.
Posted May 25, 2017 by Maria 2051
My worst symptom is the chronic pain. My joints are constantly hurting, no matter what I do. The instability of my joints make it hard for me to sometimes complete daily things.
Posted May 26, 2017 by Stephanie 800
The most limiting symptoms are the exhaustion and loose joints. The tiredness makes everything difficult. Joints dislocating make doing anything physically difficult.
Posted May 27, 2017 by Jude 2050
Pain, subluxing joints, dislocations, Degenerative Disk Disease, easy bruising, poor wound healing.
Posted May 27, 2017 by Ashley 950
The worst symptoms largely (but not definitively) depend upon the particular subtype of EDS you are diagnosed with. While hypermobility and associated chronic pain and daily headaches are common across the subtypes, there are also a number of neurological conditions which crossover. These co-morbid conditions include Cranio Cervical Instability, Chiari Malformations and Idiopathic Intracranial Hypertension.
The symptoms of these conditions can be debilitating. Chronic Fatigue is perhaps the 'worst' symptom in as much as it can be completely debilitating and severely limiting quality of life. Many EDS sufferers experience chronic fatigue without any diagnosis (or investigation) of comorbid neurological conditions and it is generally considered to be a symptom of EDS.
In addition, many with EDS suffer with POTS (Postural Orthostatic Intolerance) which some consider the worst symptom (subject to the intensity and frequency experienced).
The reality is that there is no way to give a comprehensive response to this question given the highly subjective and individualised nature of symptoms that differ from individual to individual.
The symptoms of these conditions can be debilitating. Chronic Fatigue is perhaps the 'worst' symptom in as much as it can be completely debilitating and severely limiting quality of life. Many EDS sufferers experience chronic fatigue without any diagnosis (or investigation) of comorbid neurological conditions and it is generally considered to be a symptom of EDS.
In addition, many with EDS suffer with POTS (Postural Orthostatic Intolerance) which some consider the worst symptom (subject to the intensity and frequency experienced).
The reality is that there is no way to give a comprehensive response to this question given the highly subjective and individualised nature of symptoms that differ from individual to individual.
Posted May 27, 2017 by Jay 201
Pain for me is the worst, but some do not experience debilitating pain. I have the hypermobility type which is the most painful. It's a game changer disease once it activates and the age for that varies from young child to elderly. Subluxations and dislocations are common as is fatigue and depression. The extent of damage to the joints determines how much pain you can have
Posted May 28, 2017 by Celi 2000
Pain, joint dislocation, digestive issues, fatigue, depression, fragile skin, poor wound healing
Posted May 31, 2017 by KathrynOConnor 2200
Besides the chronic fatigue, subluxations, and joint pain is a pain and just deal with it. The one that gets me is the co-morbid condition MCAD-Mast Cell Activation Disorder. Learning to deal with this monkey on my back has become interesting. I have to do light exercises to keep my muscles strong but I'm allergic to so much environmental stuff that it becomes a catch 22.
Learning to work with EDS ans MCAD has become my life.
Learning to work with EDS ans MCAD has become my life.
Posted Aug 30, 2017 by Brenda 102
My most debilitating is dysautonomia and orthostatic hypotension from classical with weak veins. My daughter had a major brain hemmorrage less than a year ago because of eds 2 or 3, we are currently gene tested for an unknown mutation of type 2 but still diagnosed 3 because it is unknown. For my children and I, weak veins (from whatever type) that cause labile vitals and might take our lives would be what I would change.
Posted Aug 30, 2017 by Jennifer Sanders 122
The fatigue is worst for me, as it's so debilitating but also the thing that's hardest to explain to anyone or for others to understand. People often think you're making it up or exaggerating how massively tired you are.
Posted Aug 31, 2017 by Jess Knowles 150
THE NAUSEA. I would love to eat a meal without feeling so nauseous after it. :/
Posted Aug 31, 2017 by Lexie 100
Falling, replacing joint after joint, chronic and acute pain
Posted Sep 15, 2017 by Phyllis 150
Honestly the worst part of EDS is the constant pain, I wake up in pain and I go to bed in pain.
Posted Sep 27, 2017 by Lbond94 4100
Frequent dislocations and chronic fatigue
Posted Oct 6, 2017 by Amy 100
For me it's the wide spread pain, my large intestines have stopped working, joint pain, the list goes on
Posted Oct 6, 2017 by Sasha 2050
Fatigue, it stops you doing anything
Posted Oct 6, 2017 by Zara 300
Joint pain
Bowel issues
Exhaustion
Bowel issues
Exhaustion
Posted Oct 7, 2017 by Sharon 7050
It varies from person to person honestly, and based on the type. For the hypermobility type, dislocations prove to be a major issue when it comes to daily life. Fatigue and pain are also common, along with gastrointestinal issues.
Posted Oct 7, 2017 by Brittany 500
Pain
Posted Oct 25, 2017 by Dolores 3050
An unnoficial list - some backed by science, some still in the early stages of research, all known to this family
loose joints (sublux, dislocations)
Arthritis
Muscle weakness
Profound fatigue
Skin folds on the eyes
Growths on pressure areas
Autonomic Dysfunction (Dysautonomia / POTS)
Pain
Mast Cell Disorders
Connective Tissue breakdown (Soft skin, tissue breakdown, tendon and ligament issues)
Hypermobile organs and veins
Bleeding issues (Von Willebrand)
Autism Spectrum
Autoimmune
Scoliosis
Occult Tethered Cord
Chiari Malformation
Anxiety
Dental issues
Fragile tissue
The first symptoms I would get rid of (the top three and the most debilitating)
Chronic Pain
Autonomic Dysfunction
Mast Cell Reactions
I do not wish to add milder symptoms in their place as I feel they should be completly removed all together.
However, since they can not be I would replace
Chronic Pain with typical pain from an overworked muscle as an example- that can heal (pain that has an end)
Or
proper knowledge and education of what pain is, types of pain, how each type is supposed to feel, what can be done to ease the type of pain you have, What NORMAL pain feels like to others - a goal to train the mind towards...so when a doctor asks where does it hurt', or 'describe your pain to me' a person with EDS can do that properly. As well - our own pain scale that we can show our doctors so they can follow and put in our files.
loose joints (sublux, dislocations)
Arthritis
Muscle weakness
Profound fatigue
Skin folds on the eyes
Growths on pressure areas
Autonomic Dysfunction (Dysautonomia / POTS)
Pain
Mast Cell Disorders
Connective Tissue breakdown (Soft skin, tissue breakdown, tendon and ligament issues)
Hypermobile organs and veins
Bleeding issues (Von Willebrand)
Autism Spectrum
Autoimmune
Scoliosis
Occult Tethered Cord
Chiari Malformation
Anxiety
Dental issues
Fragile tissue
The first symptoms I would get rid of (the top three and the most debilitating)
Chronic Pain
Autonomic Dysfunction
Mast Cell Reactions
I do not wish to add milder symptoms in their place as I feel they should be completly removed all together.
However, since they can not be I would replace
Chronic Pain with typical pain from an overworked muscle as an example- that can heal (pain that has an end)
Or
proper knowledge and education of what pain is, types of pain, how each type is supposed to feel, what can be done to ease the type of pain you have, What NORMAL pain feels like to others - a goal to train the mind towards...so when a doctor asks where does it hurt', or 'describe your pain to me' a person with EDS can do that properly. As well - our own pain scale that we can show our doctors so they can follow and put in our files.
Posted May 11, 2018 by Izzy 600
Dolores de cabeza
Migrañas
Dolores articulares
Problema de visión
Dolores en los huesos
Deficiencia de las vitaminas más q nada la vitamina d
Fatiga
Problemas de espalda
Problemas de corazón
Taquicardia
Migrañas
Dolores articulares
Problema de visión
Dolores en los huesos
Deficiencia de las vitaminas más q nada la vitamina d
Fatiga
Problemas de espalda
Problemas de corazón
Taquicardia
Posted Jul 6, 2018 by Estefania 1150
Typically characterized with very stretchy skin, VERY bendy joints, fingers and limb that can do unbelievable contortions, other physical limitations/diagnoses including POTS, MAST, MCAS and so many other possibilities that complicate your life. The loss or lack of collagen affects eVERY part of your body, especially organs and joints. Stomach and heart issues, chiari malformations, etc.
Posted Mar 21, 2019 by pianocat_61 1400
Hypermobility streatchy skin
Posted Sep 29, 2019 by Amy 13500
Clinical manifestations of an Ehlers-Danlos syndrome are most often joint and skin related and may include:
Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.
Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).
There are some symptoms that are more common in one type than the others. These can include:
Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.
Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).
There are some symptoms that are more common in one type than the others. These can include:
Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
Posted Mar 11, 2020 by MegTheMariner 1870
Symptoms: Hypermobile joints, fragile skin, slow wound healing, difficulty with numbing, joint pain, joint weakness, weak connective tissue, insomina, easily bruised, muscle pain. Rarer subtypes can effect the heart and brain.
Most limiting: The fragility of the body causing injury, combined with slow healing leading to pain.
Symptoms to get rid of: Pain and slow healing. If either were gone it wouldn't be as bad.
Most limiting: The fragility of the body causing injury, combined with slow healing leading to pain.
Symptoms to get rid of: Pain and slow healing. If either were gone it wouldn't be as bad.
Posted May 12, 2020 by Alex 3551
13 subtypes and it will depend on which one you have joint, blood vessels hair, nails joints especially with subluxation, heart could be involved if you have vEDS, which is the most severe and rare, hEDS, Classic type ect. Please research them.
Posted Nov 19, 2021 by NuNu 2550
Different for everybody however multiple parts of your body usually should be having issues
Posted Nov 28, 2022 by Taiy rinaldi-bull 600
Translated from spanish
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Chronic pain medication, problems due to alterations in the clotting of the blood, deformities in the joints.
Posted Mar 25, 2017 by Paula Lopez 1151
Translated from french
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Chronic pain
Fatigue
The dislocation/subluxation
Fatigue
The dislocation/subluxation
Posted Aug 16, 2017 by Apolline 1205
Translated from french
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The pain is extremely limiting to the level of every day gestures. Often sequelae of (sub)luxation.
The tiredness is virtually permanent
The tiredness is virtually permanent
Posted Aug 17, 2017 by Sandrine 1790
Translated from portuguese
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Depends on the type of the disease, the main symptoms and the most limiting are the hypermobility and fragility of the vascular.
Posted Aug 30, 2017 by Leilane 200
Translated from french
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Extreme Fatigue
Joint pain
Muscle pain
Disorders proprioceptive
Sleep disorders
Parasthesies
Difficulties respiratory
Joint pain
Muscle pain
Disorders proprioceptive
Sleep disorders
Parasthesies
Difficulties respiratory
Posted Aug 30, 2017 by Ehos 1050
Translated from portuguese
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In constant pain sometimes disabling.
Instability joint.
Heart problems and in internal organs.
Instability joint.
Heart problems and in internal organs.
Posted Aug 30, 2017 by Kayla Rarine 2000
