Connective Tissue Disorders/Ehler Danlos, the ECM and Chronic Issues - MCAS, CIRS, POTS, CFS, IBS, Dystonias, Pain, Proprioceptive Disorders, ETC.!

I'm still looking into this upper cervical instability issue. I think the general consensus among people who understand hypermobility better is that it is better to leave the neck alone at the beginning and focus on strengthening the lower trunk first so that the lower and middle back can stabilize the upper back and neck before you start working directly with the neck.

This is yet another important piece of data for us to advocate for ourselves, as many physiotherapists will focus on the neck if you come with neck pain but if you don't work on strengthening the lower and middle back, that might not work as intended.

Here's a short video which can give some hints:


He mentions this paper which is interesting and something that can be shared with physiotherapists:


Then, I found this channel which follows that approach, first, breathing properly in order to strengthen the inner muscles of the pelvis and abdomen, then some very mild exercises, then proprioception and posture, etc. The point being, she recommends a bunch of other things before working directly on the neck.


Fwiw...
 
I found this article in the latest Townsend Letter, a natural compound with multiple beneficial properties, including pain reduction, histamine regulation, brain protection, joint health, etc. And the brain produces it. Definitely giving it a try!

A Powerful New (and Old!) Treatment for Pain, POTS, MCAS, Lyme and Postinfectious Fibromyalgia


Having studied and treated these conditions for almost 50 years, since a nasty viral syndrome triggered my fibromyalgia and left me homeless in 1975, it’s been both a blessing and a challenge to see so many treatments.

On the plus side, most cases can be effectively treated (by natural practitioners). On the other hand, sorting through the options can be quite challenging.

This is usually the case as we learn about complex conditions. As we get closer to the truth, we can tell because things start to tie together and get simpler.

This is happening now. Research is showing the missing link that is common to so many common conditions. Including postinfectious CFS/fibromyalgia (which includes Lyme disease and long Covid), chronic pain of almost every type, sensitivities and MCAS (Mast Cell Activation Syndrome), and POTS (Postural Orthostatic Tachycardia Syndrome).

About 30 years ago I investigated a natural compound called PEA (Palmitoylethanolamide) for MCAS. There was a little research, but not enough to impress me. It took me three decades to decide to revisit it. As each study laid a “breadcrumb trail” for me to follow, it painted an amazing story. One that was so fascinating, it kept me up till 4:00 in the morning pulling study after study.

The gist?

PEA Power

When stress from chronic pain or numerous other triggers occurs, the brain makes the natural compound PEA (Palmitoylethanolamide) to manage these. When the PEA gets depleted, it triggers numerous shock waves. We see sensitivities (including MCAS); microglial activation (brain inflammation and pain) which dramatically amplifies pain and causes it to become chronic; and it causes hypothalamic dysfunction (a key player in CFS/FMS/long Covid/Chronic Lyme and POTS).

Giving PEA supports healing for all of these.

For chronic pain, I have not seen any natural or prescription options with this massive level of research proven efficacy. The research using it for MCAS and microglial activation is also convincing. As is the research tying all these together.

Treatment is Easy
The keys:

Using a high absorption form. The form I recommend includes Gammasorb to enhance absorption.
Preferably, use a PEA combined with serratiopeptidase, to address commonly accompanying biofilms.
To include both these, I use the PEA Healthy Inflammation Response by EuroMedica.

The most common dose used in the studies is 300 mg twice daily. But let people know it can take three months to see the full effect (although it can be seen in days in some cases). There is a faster way though.

The protocol I use?

Although there are hundreds of studies using PEA for pain, to get a quick sense of its power I recommend you look at Palmitoylethanolamide, a neutraceutical, in nerve compression syndromes: efficacy and safety in sciatic pain and carpal tunnel syndrome - PMC and an accompanying three minute video by the prominent Netherlands pain specialist Prof. Jan Keppel Hesselink (I strongly recommend you watch the video). He shares his experience using PEA in many thousands of people with severe chronic pain.

Here is the dosing pain specialist Prof. Jan Keppel Hesselink recommends:

He starts with PEA 600 mg twice a day in chronic discomfort, gives it a month, and then goes to 1200 mg twice a day for 2 months as a fair therapeutic trial.
2. Most often, he sees pain relief beginning at three weeks using this higher dosing.

This can be taken with other pain medications, and is often effective even when nothing else has worked.

So, 300 mg twice a day can be enough (for those not able to do higher dosing). But the above higher dosing will work more quickly and effectively. Then the dose can be lowered to whatever is needed to maintain the benefits (e.g. 300 to 600 mg daily or as needed).

In a few cases it may be energizing enough to disrupt sleep. If this happens, initially simply lower the dose, slowly working up, and take it in the morning and early afternoon.

A Brief Sampling of Research On PEA
Let’s start with a review article https://www.mdpi.com/2072-6643/15/6/1350 which has over 212 study references.

It discusses how PEA also works through cannabinoid systems as well as PPAR pathways. Basically this means it is working by mechanisms we don’t have good medications for.

And it works to help so many things. As the review notes. PEA “provides therapeutic benefits in many applications, including immunity, brain health, allergy, pain modulation, joint health, and sleep and recovery. PEA’s poor oral bioavailability, a major obstacle in early research, has been overcome by advanced delivery systems.”

PEA is thought to be produced as a protective response to cellular injury…effects include…analgesic, anticonvulsant, antimicrobial,…immunomodulatory and neuroprotective activities.14,17,21,22,23 PEA’s multi-faceted effects are due to its unique mechanisms of action.” It also helps your immune system with viruses, bacteria, and “leaky gut.”

“PEA’s neuroprotective effects are due to its ability to modify microglia and astrocyte activation.” As an added bonus it even improves mood.

PEA also powerfully decreases discomfort by over a dozen different mechanisms, including addressing central sensitization. It supplies an alternative for those who can’t get or use low dose naltrexone, and can be synergistic with LDN as well.

Another study showed PEA significantly improved recovery from exercise, so it may be helpful for PEM. The Effect of Orally Dosed Levagen+™ (palmitoylethanolamide) on Exercise Recovery in Healthy Males-A Double-Blind, Randomized, Placebo-Controlled Study - PubMed.

The PEA may improve sleep.PEA’s combined analgesic, anxiolytic and [mood lifting] effects differentiate it from any other sleep aid currently in use, and make it an attractive alternative to current treatments.”

As an aside, chronic discomfort is associated with more rapid brain aging. https://www.nature.com/articles/s44220-024-00223-3.epdf.

As I’ve noted in earlier articles, I suspect this is largely through mechanisms such as microglial activation. PEA can markedly help this, and research has shown it to be brain protective. This brain protective quality is discussed in a review with over 100 references Effects of Palmitoylethanolamide on Neurodegenerative Diseases: A Review from Rodents to Humans - PubMed. It even enhances neurogenesis (growth of new healthy brain cells). Therapeutic effect of palmitoylethanolamide in cognitive decline: A systematic review and preliminary meta-analysis of preclinical and clinical evidence - PubMed and can help the brain in a large number of conditions Effects of Palmitoylethanolamide on Neurodegenerative Diseases: A Review from Rodents to Humans - PMC.

Making it an important “ounce of prevention” as well to protect brain health. The PEA also helped improve cognitive function even in healthy people Formulated Palmitoylethanolamide Supplementation Improves Parameters of Cognitive Function and BDNF Levels in Young, Healthy Adults: A Randomised Cross-Over Trial - PMC.

Another meta-analysis Palmitoylethanolamide in the Treatment of Chronic Pain: A Systematic Review and Meta-Analysis of Double-Blind Randomized Controlled Trials - PMC looked at 253 studies on PEA for discomfort, of which 11 were included in the meta-analysis. The conclusion? “PEA is an effective and well-tolerated treatment for chronic pain.”

PEA and Microglial Activation, Mast Cell Activation, and Histamine Release
Cellular studies show that PEA significantly helps settle down microglial activation. Palmitoylethanolamide Modulation of Microglia Activation: Characterization of Mechanisms of Action and Implication for Its Neuroprotective Effects - PMC as well as mast cells.

“Nowadays the efficacy of Palmitoylethanolamide in controlling mast cell behavior, which likely accounts for its many anti-inflammatory, anti-angiogenic and analgesic effects, is well recognizedNew insights in mast cell modulation by palmitoylethanolamide - PubMed it also blocks histamine release by mast cells. Which is important.

Excess mast cell histamine release in the hypothalamus makes it very difficult to sleep. It also can contribute to discomfort, digestive, and other symptoms. Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome - PMC

CFS/Fibromyalgia?
A number of studies have now shown PEA can improve their symptoms



======================================================

For free patient information sheets on PEA or treating POTS (including two free home or office screening tests, MCAS, or neuropathy, please email me at FatigueDoc@gmail.com. Note which sheets you’d like, and that you are a practitioner.

I am answering questions, for both practitioners and people with CFS/FMS/LC and pain, on my new Facebook support group “Recovering from Fibromyalgia, CFS, and Long Covid”

This is a remarkable natural healthcare breakthrough. Chronic pain or sensitivities? POTS/FMS/Lyme? Add in the PEA and give it 2-3 months. It will turn these people’s lives around!
 
While researching for possible causes of my partners achalasia I came across a medical centre in Florida that specialises in joint laxidy. Their website covers a range of illness EDS being one of them.

What I find interesting is the instability of upper cervical spine and the downstream of side effects, I have them all at any given time, though my neck is stiff and very very creaky. I’ve had adjustment that literally do nothing. I can crack my neck just by tilting it, it gives short term relief. Massage does very little, the supporting muscles feel like bone.

IMG_4199.jpeg


The info on their site is extensive with varied treatments. Here in Australia there is one practitioner familiar with the therapies used, I’m definitely not flying to Florida at this point but might consider a trip to Queensland in the future to try prolotherapy if all else fails. I have a chiro who has vast knowledge of connective tissue, I haven't seen him for a while (self worth problems and depression caused me to stop seeing him, even though I was getting results) I’m back in his office this week to restart therapy with him.

What is prolotherapy- AI overview

Dextrose prolotherapy
(DPT) is a regenerative, non-surgical injection treatment often used to manage chronic joint pain, instability, and ligament laxity in Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorders. By injecting a hypertonic solution into affected joints, it induces a, inflammatory healing response that strengthens connective tissues, reduces subluxations, and may help prevent premature arthritis.
EDSAwareness.com +4
How Prolotherapy Works for EDS
  • Mechanism: Prolotherapy irritates loose ligaments and tendons, stimulating an immune response that causes them to contract, thicken, and strengthen.
  • Tissue Repair: The procedure stimulates fibroblast growth, which promotes collagen production and helps stabilize connective tissue affected by the inherited collagen defect.
  • Target Areas: It is commonly used for, but not limited to, the neck, shoulders, and sacroiliac joints (SIJ) to alleviate pain and improve stability.
  • Effectiveness: Studies suggest it is an effective option for reducing pain and apprehension associated with joint instability in patients with EDS.
    ScienceDirect.com +4
Key Considerations for EDS Patients
  • Non-Surgical Option: Prolotherapy provides a non-surgical alternative to tighten ligaments and reduce joint instability, often in patients who have been told surgery was the only option.
  • Comprehensive Treatment: Multiple joints can often be treated at each visit.
  • Safety & Efficacy: It has a high safety record, though it may require multiple sessions to achieve desired results, with some patients reporting significant improvements in function and pain relief.
  • Specialized Care: Treatment is often guided by ultrasound to ensure precision in targeting weakened structures.
While it does not cure the underlying genetic, metabolic, or biochemical defects of EDS, prolotherapy serves as an effective, symptom-management technique to improve the quality of life for those with hypermobility issues.


Here’s a load of information from the EDS section of the clinic in Florida.
 
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