Effective treatments for Complex Conditions: CFS, Long Covid, POTS and MCAS

03/01/2024

28/10/2023

Orthostatic intolerance describes the increase of symptoms when standing. Increased heart rate, blood pooling, dizziness, and headaches that increase when upright are signs of orthostatic intolerance.

26/10/2023

Today is PoTS Awareness Day. Read more about the condition and its relationship to ME/CFS on our website: meres.uk/pots

25/10/2023

The autonomic nervous system (ANS) regulates involuntary functions of the body that we do not consciously think about, such as heart rate, digestion, and breathing. The ANS includes the sympathetic nervous system, which stimulates the body's "fight or flight" response, and the parasympathetic nervous system which stimulates the body's "rest and digest" responses needed to restore energy and rest the body. People living with various forms of can have trouble regulating one or both of these systems, causing a variety of symptoms such as lightheadedness, fainting, unstable blood pressure, abnormal heart rates, gastrointestinal dysmotility, sweating abnormalities and much more. Learn more: bit.ly/WhatisDys

18/10/2023

Although people living with may look healthy, they could struggle with many debilitating symptoms. Share this post and how dysautonomia has impacted your life during ! Learn more at https://www.dysautonomiainternational.org/whatisdys

15/10/2023

Many people think of burning and numbness when they hear the word “neuropathy,” but neuropathy can cause much more than that. Sensory neuropathy can cause burning and numbness. Autonomic neuropathy can cause symptoms like lightheadedness, fatigue, cognitive impairment, GI dysmotility, pupil dysfunction, dry eyes, dry mouth, bladder dysfunction, blood pooling in the limbs, and much more. Very often, when the autonomic nerves are impaired the sensory nerves are impaired too, and vice versa.

Doctors can screen for autonomic neuropathy through formal autonomic function testing (tilt test, Valsalva, heart rate response to deep breathing, QSART) and for small fiber autonomic neuropathy through skin biopsies assessing the density of sudomotor nerves (sudomotor nerves are the nerves that regulate our sweat glands).

Unfortunately, many patients are never offered formal testing to screen for autonomic neuropathy. We are trying to change that through improved clinician education! Help us educate more clinicians about autonomic disorders by donating at https://dysautonomiainternational.org/donate

12/10/2023

There are many conditions that fall under the dysautonomia umbrella term. In today's post you can see examples of a different kinds of dysautonomia. All conditions have very specific criteria that a patient must meet in order to obtain a diagnosis. Below are more details on each condition.

• Postural orthostatic tachycardia syndrome - heart rate increase greater than or equal to 30 beats per minute(adults) or 40 beats per minute (adolescents) from supine to standing, sustained over 100 bpm within 10 minutes, absence orthostatic hypotension

• Inappropriate sinus tachycardia - resting heart rate is over 100 beats per minute or an average 24-hour heart rate over 90 beats per minute. In the absence of any cardiac cause for the tachycardia.

• Vasovagal syncope - heart rate and blood pressure drop and cause syncopal episodes

• Orthostatic hypotension - blood pressure drops against gravity 20 mm Hg systolic and 10 mm Hg diastolic within two to five minutes of standing

• Autoimmune dysautonomia - autoantibody panel includes ANNA-1, CASPR2 Ab, DPPX Ab, Ganglionic AChR Ab, LGI Ab - results interpreted in clinical context for each patient

• Multiple system atrophy - urinary incontinence or orthostatic decrease of blood pressure within three minutes of standing by at least 30 mm HG systolic or 15 mm Hg diastolic, additional symptoms

• Pure autonomic failure - diagnosis of exclusion, fall in blood pressure standing, norepinephrine levels reduced, widespread autonomic findings

• Autonomic dysfunction - dysfunction in the autonomic nervous system, does not meet criteria for diagnosis

10/08/2023

Researchers recently reported improvement in POTS symptoms and severity of tachycardia in Long COVID POTS patients using ivabradine. Ivabradine is a drug that lowers heart rate without dropping blood pressure. Prior research has found a benefit in pre-COVID POTS patients too.

Read the study results here: www.ncbi.nlm.nih.gov/pmc/articles/PMC10352820/

04/08/2023

Myofascial release therapy is by far the treatment that has given me the most fibromyalgia pain relief, and I am not alone! Wendy from Texas recently emailed me: "I have had fibromyalgia since I was a teenager in the late 1980s, although I wasn't diagnosed until 2006. Your books--both Figuring Our Fibromyalgia and The Fibromanual--have been enormously helpful to me in managing my illness, working with my doctors, and figuring out the best approaches to treatment (particularly as I have had many bad experiences with medication).Most helpful of all was your suggestion of myofascial release therapy. Since 2018, I have been seeing Erin Anderson at Central Texas Myofascial Release and have seen significant improvements in my physical well-being. Together with regular Pilates practice, MFR therapy has helped me I feel as well as I have in years, which is wonderful."

NOTE: The type of myofascial release that I recommend is the John F Barnes' Myofascial Release Approach.
Learn more at www.myofascialrelease.com and find a therapist near you at www.mfrtherapists.com

Not tagged but also an option is Lotus Root physical therapy, Amanda Keegan, PT