Systemic Manifestations and Health-Related Quality of Life in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type – Sydney Medical School, Discipline of Biomedical Science – Krahe, Anne
Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT) is a hereditary connective tissue disorder associated with both musculoskeletal and systemic manifestations.
There is increasing recognition of the significance of the non-musculoskeletal manifestations of the disorder, such as
- orthostatic intolerance,
- gastrointestinal symptoms and
- psychological features, Continue reading
I found this fatigue scale during my research and felt it applies to any patient who lives with constant pain.
Chronic pain is exhausting.
Even if we are ignoring it mentally, our bodies have to cope with the constant stimulation of pain signals from nociception and inflammation. These biological activities come with a cost: depleted energy.
This “Fatigue Severity Scale” is used to measure the fatigue caused by Lyme disease, Chronic Fatigue Syndrome, Lupus, multiple sclerosis, and rheumatoid arthritis – why not EDS as well? Continue reading
Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile type – Hakim – 2017 – American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Wiley Online Library
It is the authors’ opinion that the criteria used for diagnosing CFS and hEDS are inadequate and contribute to diagnostic confusion.
To meet a diagnosis of CFS, fatigue must be “unexplained by other conditions.”
Therefore, a diagnosis of hEDS must exclude a diagnosis of CFS.
However, hEDS is likely to be substantially under-diagnosed and it is likely that some patients diagnosed with CFS may meet or would previously have met the criteria for diagnosis of hEDS. Continue reading
All Fatigue is Not Created Equal: Why it Matters and What it Means for Pain Management – by Ian Boggero – April 6, 2017
For people with chronic pain conditions, feelings of fatigue may be the norm rather than the exception. In fact, fatigue is one of the most common symptoms reported by patients with chronic pain and increases as the intensity of the pain increases.
Why does fatigue matter? It predicts low quality of life and poor functioning in a number of chronic pain populations, including cancer and lower back pain.
In our work, we found that fatigue predicts low satisfaction with life in patients with chronic orofacial pain (pain in the head and face), and partially explains why pain is associated with psychological distress. Continue reading
Excellent information on EDS in general, from a slideshow by Alan Pocinki, MD (I can’t find the original link):
Cardio Vascular Dysregulation
- POTS- Postural Tachycardia Syndrome
- OH- Orthostatic Hypotension
- NMH- Neurally mediated hypotension (vaso-vagal syncope, neuro-cardiogenic syncope, delayed orthostatic hypotension)
- OI- Orthostatic Intolerance
What We Know About Cardiovascular Dysregulation Continue reading
Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME
Though this article refers to Chronic Fatigue Syndrome, these symptoms often overlap with other chronic conditions, like Fibromyalgia. Also, people with EDS are often suspected of having mitochondrial issues.
It has been well documented that there is an abnormal increase in cytokines (chemicals released by the immune system) in CFS/ME patients following mild exercise. This causes another type of fatigue on top of the mitochondrial dysfunction fatigue discussed below. Cytokines in general, without the exercise trigger, can cause fatigue. There are probably additional causes of fatigue (such as orthostatic intolerance) as well.
Role of mitochondria in cellular function
Fatigue in chronic inflammation – a link to pain pathways | 2015 Oct | Full-text PMC article
This is a long, detailed, technical article about the link between fatigue, pain, and inflammation.
Fatigue is a frequent symptom in several inflammatory diseases, particularly in rheumatic diseases. Elements of disease activity and cognitive and behavior aspects have been reported as causes of fatigue in patients with rheumatoid arthritis.
Fatigue could be associated with activity of inflammatory rheumatism. Indeed, biologic agents targeting inflammatory cytokines are effective in fatigue. Continue reading
Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome, hypermobility type): principles and proposal for a multidisciplinary approach. – PubMed – NCBI | Am J Med Genet A. 2012 Aug
Here is more proof that EDS causes pain and fatigue, which requires treatment and has a severe impact on our quality of life.
Joint hypermobility syndrome (JHS), or Ehlers-Danlos syndrome (EDS) hypermobility type (EDS-HT), is a underdiagnosed heritable connective tissue disorder characterized by generalized joint hypermobility and a wide range of visceral, pelvic, neurologic, and cognitive dysfunctions.
Deterioration of quality of life is mainly associated with pain and fatigue. Continue reading
Comorbidities of EDS | Oh Twist!
As I’ve mentiond numerous times throughout this blog, people with Ehlers-Danlos Syndrome seriously win the bad health lottery when it comes to comorbidities, or conditions you have along with a primary condition.
I think it helps when you remember that collagen runs through 80% of the body, so affects virtually every system.
Lastly, I’ll note that there are often BOTH bio-mechanical (physical, e.g. impinged nerves, muscle tension, herniations, loose ligaments), and bio-chemical (e.g. allergy, MCAD) causes to many of our issues (e.g. headaches, frequent urination) lending to the diagnostic and treatment challenge. Continue reading
Social Exhaustion: An ME/CFS and Fibromyalgia Dilemma |by Sue Jackson | Jun 21, 2015 | Health Rising
Though this article refers specifically to ME/CFS patients, it can apply to most other chronic illnesses as well.
just being with other people can totally wipe me out…I guess “social exhaustion” is as good as any description
We had a great weekend. Except…that I was totally exhausted by dinnertime Saturday – wiped out, worn out, barely keeping my head up, frazzled, and wrecked… I finally gave up at 9 pm and went upstairs to bed, while everyone else (including my kids!) stayed up well past midnight.
Lying down flat in a completely quiet room and reading my book felt so good
It feels like some of it is energy depletion – no different than doing too much physically – and some of it is over-stimulation. Continue reading