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
When I recently read the phrase, “I’m embarrassed to be sick”, it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people-–especially those that knew me before I became chronically ill.
At the age of 55, after a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed in 2012 with Ehlers-Danlos Syndrome, a genetic flaw which leads to defective connective tissues. This results in chronic pain and many other health problems, as body parts aren’t held together properly, joints dislocate spontaneously, tissues stretch or tear, lose elasticity, and wear out early.
I am ashamed of being sick. I spent my previous life trying to prove how tough I was, declared my independence early, made my own way successfully… and now I’ve lost it all. Continue reading
Mitochondrial Depletion Could Underlie the Energy Problems in Chronic Fatigue Syndrome – Health Rising
Debilitating fatigue is a symptom of many other illnesses, like EDS, and reduced mitochondrial capacity could be the culprit.
a model exploring mitochondrial dynamics – may help explain what’s causing the post-exertional problems
this study extended a well-known metabolic model explaining what happens to the mitochondria in the skeletal muscles during exercise. The authors enhanced it by adding some processes to it (lactate accumulations / purine degradation) known to occur in the mitochondria.
Central pathways causing fatigue in neuro-inflammatory and autoimmune illnesses | BMC Medicine | Full text
The genesis of severe fatigue and disability in people following acute pathogen invasion involves the activation of Toll-like receptors followed by the upregulation of proinflammatory cytokines and the activation of microglia and astrocytes.
This is also true of many patients presenting with severe, apparently idiopathic, fatigue accompanied by profound levels of physical and cognitive disability often afforded the non-specific diagnosis of chronic fatigue syndrome
Multiple lines of evidence demonstrate a positive association between:
- the degree of peripheral immune activation,
- inflammation and oxidative stress,
- gray matter atrophy,
- glucose hypometabolism and
- cerebral hypoperfusion
in illness, such as multiple sclerosis, Parkinson’s disease and chronic fatigue syndrome. Continue reading
Could A Mitochondrial Enhancer Replace Cymbalta in Fibromyalgia? – Health Rising
How a Mitochondrial Booster Became an Antidepressant
Acetyl L-carnitine (ALCAR) is best known as an energy supplement and mitochondrial booster the but folks in this fibromyalgia clinical trial were looking for more than increased energy; they were looking for relief from pain and depression as well. They pinned ALCAR not as an energy booster per se, but as a central nervous system protectant – and they had good reason to do so.
Clin Exp Rheumatol. 2015 Mar-Apr;33(1 Suppl 88):82-5. Epub 2015 Mar 18. A randomised controlled trial comparing duloxetine and acetyl L-carnitine in fibromyalgia patients: preliminary data.