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

[Jones]

I've already noticed that the proprioception in my ankles seems better if I wear boots with elastic sides and thick socks so the information about proprioception and compression garments is interesting.

I'm wondering about trying a compression shirt for my thoracic symptoms. One of the exercises the chiro has given me is to lay on a noodle for 10 mins per day to help reset the proprioceptive communication between the vertebrae in my back. Even though I rely on a brace for my lower back on occasion, he discourages that unless necessary because his idea is that he doesn't want me to lose muscle tone and flexibility in my spine. So the idea of a compression shirt could be worth considering.

I did a tandem parachute jump a few years back and I noted that I felt super relaxed and calm thoughout and I'd put that down to the fact that I was strapped so tightly to the jumping instructor that it felt very safe and relaxing - even though part of the jump was a free fall from 13,000ft! I'm wondering if that was the compression effect?

Otherwise, it seems I don't have enough markers to be considered an EDS patient.

 

[Yas]

One of the things I found about Ehlers Danlos that seems paradoxical but makes sense is that exercise is very helpful in reducing pain and injuries. Some people say that muscle toning works by creating something similar to "compression garments" around the joints and that helps with pain because we start relying more on the muscles for body support instead of the joints.

Of course, exercise can be very challenging if you can't even walk, so it depends a lot on how the person is to decide what type of exercise can be good. Another important thing is that, because of the joint hypermobility, a lot of people have bad posture and that makes it important to either use exercise programs that put a lot of emphasis in right posture or do the exercise with the guidance of trained physical therapists that can help correct the bad posture and adapt the training to the individual condition. It's important to avoid hyperextending the joints while exercising and that might need some guidance because we can get so used to hyperextending all the time. For that same reason, some people think that exercise that focuses a lot on stretching beyond gentle stretching is actually not very beneficial because it may promote even more laxity.

There's an interesting book that is available freely called Ehlers-Danlos Syndrome: A Multidisciplinary Approach, in case you are interested (link here). I found this interesting:

Generalised joint hypermobility syndromes, particularly hypermobile EDS, are associated with increased fatigue.34-36 A hypothesis is that fatigue is a symptom of autonomic dysfunction or dysautonomia, described below.35,36 Others suggest that the ligamentous laxity demands increased vigilance, muscle tension and coordination to maintain adequate joint position and body balance,24,37,38 thus leading to fatigue. In addition, these patients often show muscle weakness,29 reduced exercise tolerance, physical deconditioning and pulmonary symptoms (see below),39 commonly attributed to reduced exercise because of chronic pain (figure 5-1). Finally, fatigue could be associated with depression and other psychological problems associated with generalised joint hypermobility.36,40 Most probably, fatigue is caused by a constellation of these factors, of which the individual impact will vary between patients.



Via several mechanisms, pain and chronic fatigue may ensue, leading to less physical exercise. This leads to physical deconditioning, associated with chronic pain and fatigue, and a vicious circle. The way to break this vicious circle and often downward spiral is to prevent or treat (further) physical deconditioning by daily physical training (exercises). Not all features have to be clearly present in all patients.

Fatigue and generalised pain are paramount among the symptoms that establish a clinical similarity and diagnostic confusion between joint hypermobility syndromes and fibromyalgia14-17,41. Some authors even argue whether fibromyalgia is merely a description of the symptoms of EDS or a separate disease entity in these patients.14-1

Physical therapy and daily exercises at home should be performed: toning exercises for stabilization of joints, exercises improving proprioception, exercises diminishing physical deconditioning (figure 5-1) and improving posture. Heavy resistance training seems feasible and effective in classical EDS patients, improving tendon and skeletal muscle properties.86 In patients with osteoarthritis of the hip or knee (without a joint hypermobility syndrome) exercise therapy has demonstrated efficacy in reducing pain and disability;87 in hypermobile children also a beneficial effect of physiotherapy on pain was found.88 It seems prudent to advice exercises to improve muscle strength and proprioception of joints, although in patients with joint hypermobility syndromes there is lack of data.89 The prospective study showing no relationship between joint hypermobility and injury in dancers,8 who often have a trained body, could also be an argument for exercises. There seems to be no contra-indication against prudent stretching exercises, but prolonged joint hyperextension, e.g. standing with hyperextended knees, should be avoided.

Adaptations and assistive devices (braces, grasps, waterbed, mattress, wheelchair, electric scooter), adapted shoes, adaptations to living and working environment could all have a place in the management strategy. Care should be put in avoiding that adaptations and assistive devices lead to less physical exercises or activities, as this could potentially be harmful by increasing physical deconditioning and ensuing complaints. However, adaptations and assistive devices may lead to increased activities and there can be medical and social reasons to prescribe them.

Preventive measures
Given the known tissue and especially vascular fragility it is sensible to limit exposure to vigorous contact sports and isometric exercise, such as weight lifting, the carrying of unusually heavy loads, or sudden changes of acceleration because of risk of bruising and increases in blood pressure, respectively. Thus whilst jogging is acceptable, sprinting is contraindicated and similar considerations apply to tennis as contrasted with squash rackets.

Similarly, because of the adverse effects of vascular overload, regular monitoring of blood pressure and meticulous control to normal values is sensible in both young and older adults. Because of significant risks of arterial pathology and fragility, any sudden onset of unusual pain needs prompt and meticulous investigation, by both clinical examination and appropriate non-invasive imaging.

Physiotherapy – exercise therapy (see also chapter 22)
It is important to realise that active exercise therapy16 should be carried out in carefully controlled way. Following physiotherapy, patients should not experience more pain than beforehand. If this occurs, the therapy was too strenuous, exercises too heavy and weight training too intense. Physiotherapy should be used in moderation and the intensity increased only very gradually. If the pain or cramp increases nevertheless, the therapy should be adapted in intensity, force and duration. Particular care must be taken with weight training. The force exerted by muscles is transferred to the tendons, ligaments and joint capsules, which are highly prone to ‘stretching’. It is not possible to strengthen these structures through exercise or weight training. Weight training can cause joints to become unstable and painful if they were not so already. It is possible, however, to train muscle coordination and in some cases proprioception (the sense of how one's own limbs are oriented in space).16 Proprioception coordinates muscle activity, or the subtle interplay between agonists and antagonists, allowing for smooth joint movements (see chapter 13). A well-trained muscular system can help to stabilise the function of unstable joints. It is more important for patients to be able to make smooth, well coordinated movements than to be able to exert great force. Moreover, it is rarely necessary for the patient to exert great force in their daily activities, and many assistive devices are available to help patients to, quite literally, save their strength. However, this does not mean patients no longer have to exercise actively. On the contrary, home exercises must be carried out twice a day for at least thirty minutes to prevent further muscle deconditioning and loss of the muscles’ capacity for coordination.

EDS patients who regularly experience pain, must be taught how to cope with the pain. They should be discouraged to become passive, becoming bedridden or chair/wheelchair bound without moving. The motto ‘to move is to live’ also applies for EDS patients. Almost all
rehabilitation centres have a programme dedicated to dealing with pain. If necessary, particularly in cases of acute pain, temporary analgesia may be given to relieve the symptoms, although it is important that these are prescribed with caution, partly due to the risk of side effects. EDS patients must continue to walk as much as possible as this (more than any other activity) helps to maintain good physical condition. Unlike in the past, it is nowadays accepted that fatigue, which is a common complaint in EDS patients, must not be treated with long-term rest. Acute fatigue may be treated with short periods of rest. Chronic fatigue must be treated using periods of rest alternated with controlled periods of movement and walking or exercise.

 

[Scottie]

One of the things I found about Ehlers Danlos that seems paradoxical but makes sense is that exercise is very helpful in reducing pain and injuries.

That's exactly what our physio friend Thomas said: when your joints are achy, don't sit around and rest so they can heal. Get up and move - within reason, of course!

I've found his philosophy to be quite true, at least for me. If I stop our workouts for a few weeks due to being "too busy", I get achy. The minute I restart, it goes away and I feel great again.

AFAIK I don't have E-D, but I suspect many of the recommendations for E-D also generally apply to the rest of us. After all, we've all got lots of connective tissue!

 

[Lilou]

That's exactly what our physio friend Thomas said: when your joints are achy, don't sit around and rest so they can heal. Get up and move - within reason, of course!

I've found his philosophy to be quite true, at least for me. If I stop our workouts for a few weeks due to being "too busy", I get achy. The minute I restart, it goes away and I feel great again.

I have also found that to be true! I was having a good deal of hip pain. After suffering with it for 2 or 3 days, I did a 10 minute workout and like magic, the hip pain was gone! I was quite surprised as it was pretty much instant relief.

As a side note: I ate some really high carb sugary pastries awhile ago. Knowing my blood sugar was likely elevated, I tested and my bs was 179! I did a 10 minute Denise Austin workout and retested as soon as I finished. To my surprise, post workout, my bs was 110!! Another good reason to keep moving, especially if you’ve cheated!

 

[Andrian]

I've already noticed that the proprioception in my ankles seems better if I wear boots with elastic sides and thick socks so the information about proprioception and compression garments is interesting.

I'm wondering about trying a compression shirt for my thoracic symptoms. One of the exercises the chiro has given me is to lay on a noodle for 10 mins per day to help reset the proprioceptive communication between the vertebrae in my back. Even though I rely on a brace for my lower back on occasion, he discourages that unless necessary because his idea is that he doesn't want me to lose muscle tone and flexibility in my spine. So the idea of a compression shirt could be worth considering.

I did a tandem parachute jump a few years back and I noted that I felt super relaxed and calm thoughout and I'd put that down to the fact that I was strapped so tightly to the jumping instructor that it felt very safe and relaxing - even though part of the jump was a free fall from 13,000ft! I'm wondering if that was the compression effect?

Otherwise, it seems I don't have enough markers to be considered an EDS patient.

Sorry Jones, what is a noodle? And can you buy one to have it at home? It may help my back and the cervical part.

Very Interesting, I remember now a few times in the past wearing a pretty tight t-shirt under the button shirt and I was feeling pretty good, maybe more grounded?

I've ordered a compression t-shirt to wear under the button shirt at work thus i'll see if it has any benefits or I was just imagining things when I wore one the last time.

Thank you for sharing the information Gaby.

 

[Jones]

Sorry Jones, what is a noodle? And can you buy one to have it at home? It may help my back and the cervical part.

It's a foam pool toy that looks like this:



I cut a length of approx 30cms and lay on it running lengthwise along my spine between my shoulders and bottom of rib cage. Light and portable, I also keep one in my workbag. I don't think it has a large enough circumference for neck use. There are better options for that like the denneroll, but probably best to get your neck assessed so you know where to place it. Otherwise, you can just roll up a towel to place under your neck - fold it in half lengthways and then roll it up firmly. Can wrap sticky tape around it to keep it all rolled up firmly.

Edited to add: The rule of thumb that the chiro gave for using these things is that if the discomfort level is over 5 on a scale to 10, don't stay on them for any longer than 5 mins because if it fires up the sympathetic nervous system, then your muscles are just going to tense up and work against the outcomes aimed for.

 

[Beau]

Great info, thank you for this, Gaby!

I have been suffering from Fasciitis Plantaris, which refers to the plantar fascia, a thick band of tissue on the bottom of the foot that support the arch. "Fasciitis plantaris" is the term for inflammation of this fascia, commonly known as plantar fasciitis. This condition often causes heel pain, especially with the first steps in the morning or after periods of rest. And I have to say: this is very painful and annoying, since I have to walk a lot in my work.

I haven't been to the doctor yet, but with this info I'm going to start wearing short compression stockings specially designed for this condition, which I didn't know it existed: https://www.amazon.com/s?k=short+compression+socks+plantar+fasciitis&crid=2BCWZL0SMUT4P&sprefix=short+compression+socks+plan,aps,619&ref=nb_sb_ss_p13n-pd-dpltr-ranker_1_28

I had an issue with plantar fasciitis when I was working on my feet and bought special shoes that greatly helped with reducing the issue by giving me more of an arch since I am pretty flat-footed. Not sure if you are too, but you may want to get some shoes that better support your arch. I got mine from Ortho Feet on Amazon.

 

[Cordillera]

I love this thread because it describes my physical challenges so well and also makes perfect sense of why so many people who practice Tai Chi and Qi Gong prefer those exercises and why they have similar physical challenges.

It's been important for me to eliminate inflammatory foods. Although it's a constant battle to avoid giving in to temptation. Because the big problem is that they don't cause me problems immediately, but the next day I feel fatigued or my joints hurt.

Tai Chi and Qi Gong are very good because they're low-impact exercises (or you can adjust the impact depending on how you feel each day) and they greatly help with proprioception. However, it's important for me to also do activities that help me maintain muscle tone. So, before getting up in the morning, I do some isometric exercises in bed or do gentle movements between positions, especially push-ups.

I also find it very helpful to do Tai Chi Ball exercises, which are done with a slightly weighted ball (I have a 1.5-kilogram ball). These exercises help keep your back strong, but they're also great for your arms and legs. They've also been very useful for strengthening tendons and ligaments. Here's an example:

 

[Gaby]

I also find it very helpful to do Tai Chi Ball exercises, which are done with a slightly weighted ball (I have a 1.5-kilogram ball). These exercises help keep your back strong, but they're also great for your arms and legs. They've also been very useful for strengthening tendons and ligaments.

I gave this one a try with very good results. I consulted a specialist in connective tissue disorders who recommends these practices to all his patients. He says it's the training par excellence for your proprioception system in your body, with every movement teaching your body it's spatial orientation.

Physical therapists and other gym people often have difficulty understanding the difficulties of people with connective tissues, the field itself attracts people who are fit and at ease with their bodies. A lot of people with connective tissue disorders get tendinitis or peri-tendinitis when they try to lift a lot of weight. In some conditions, like in Ehler Danlos syndromes, the muscle never gets hypertrophied with weight lifting, so there's always a risk of injuries or straining a joint.

Often, it's enough to adapt the physical exercises to favor more isometric exercises and a wider range of movements, without having to aim for a lot of weight.

Years ago, I remember giving up Aikido after accumulating injuries and pains and favoring a discipline (Ryushin Shouchi Ryu) which is more meditative and with no hard core combat training, but with a sword. After a couple of years of training, I even drove my car much better. It effectively re-wired my brain.

 

[meadow_wind]

I'm sure many people are unaware of this, but Gyrokinesis is also an excellent exercise method for individuals with pain and/or disabilities. A professional circus performer friend told me it was the only system that helped her heal her injuries (after trying everything else). If I remember correctly, it was developed for classical ballet dancers.

A quick Google search gave me this summary:

It's a movement system created by Juliu Horvath that uses rhythmic, circular, and spiraling movements to improve range of motion, stimulate the nervous system, and increase functional strength. Performed on a mat and a chair, the exercises coordinate breath, movement, and mental focus to release tension, enhance balance and flexibility, and promote overall well-being. The system is distinct from Gyrotonic®, which uses specialized equipment.

Gyrokinesis focuses on the spine's seven natural movement directions, including arching, curling, and spiraling motions. Movements are smooth, connected, and flowing, designed to avoid jarring or compression. The exercises integrate rhythmic breathing patterns with intentional movement and mental focus to enhance energy and connection.

Increased Flexibility and Strength - Improved Balance and Agility - Nervous System Stimulation - Stress Reduction - Enhanced Body Awareness


Here is a good video of a decent length and enough explanation of the technique for a beginner.

Another option

This one is also very good. Don't be intimidated by his speed: all of it can be done as slowly as one wishes. The same applies to the amplitude of movement: don't go beyond what you can.

 

[Gaby]

The following study, Prevalence and treatment response of neuropsychiatric disorders in mast cell activation syndrome (MCAS), published in June 2025, does a great job in increasing awareness about MCAS. They discourage the term "histamine intolerance" because it's really short minded. A few key points...

MCAS is common, yet it's rarely diagnosed.

It is an inflammatory and immunological disease characterized by mast cell dysregulation.

MCAS indivuals are at a high risk for neuropsychiatric (NP) disorders and may see symptom improvement using MCAS-targeted therapies, suggesting that mast cell dysregulation affects the brain and peripheral nervous systems.

Among the most useful therapies were anti-histaminics and low dose naltrexone therapy.

Mast cell activation syndrome (MCAS) remains unrecognized as the primary cause for many complex patients with a multisystemic disorder.

Although allergic, dystrophic, and other phenomena are commonly seen in MCAS, chronic multisystem inflammation is the universal constant, or sine qua non, of MCAS

The diagnosis of MCAS is often delayed for decades. Reasons for this include: 1) the relative absence of MCAS education in medical school and residency curricula, 2) the common misconception that an increased serum tryptase level is needed to establish the diagnosis, and 3) the marked heterogeneity of the disease's clinical presentation (consequential to its marked heterogeneity at the genetic mutation level and the mediator expression level).

In the largest series of prospective MCAS patients (N = 413), the prevalence of various NP disorders and symptoms included fatigue (83 %), fibromyalgia-type pain (75 %), pre-syncope/syncope (71 %), headaches (63 %), cognitive dysfunction (49 %), insomnia (35 %), vision abnormalities (30 %), anxiety and/or panic attacks (16 %), depression (13 %) and involuntary movements (13 %) (Afrin et al., 2017). In 2010, an article listed headache, syncope, and psychiatric conditions that were associated with mast cell activation (Akin et al., 2010).

The most common physician-diagnosed comorbid diagnoses were POTS, irritable bowel syndrome (IBS), and urticaria.

Neuropsychiatric prevalence:

In the subjects who experienced the following psychiatric disorders and symptoms, antihistamines were rated effective by 21 % for anxiety disorder, 14 % for anger management problems, 13 % for depression, and 12 % for panic disorder. LDN was rated effective by 16 % for anxiety disorder and depression, 14 % for bipolar disorder, 12 % for agoraphobia, and 10 % for ADHD.

Most of the histamine receptors (H1, H2, and H4, found on most mast cells (MCs) are also found on most neurons, so it is inescapable that aberrantly excessive histamine expression by the fundamentally dysfunctional MCs at the root of MCAS (and regardless of whether such MCs are resident within the CNS or outside) has ample potential to drive a wide array of problems in both peripheral and central neurons both directly via binding with neuronal histamine receptors as well as indirectly by binding with various immune and glial cells in the central nervous system.

This multisystemic disease can account for the underlying pathophysiology in certain idiopathic syndromes including POTS, FMS, CPPS, and IBS. These syndromes have been labeled as have underlying centralized hypersensitivity.

A high burden of NP manifestations has also been documented in

In the present study, fatigue and cognitive dysfunction had the highest OR (20.5 and 20.1, respectively). LDN was rated helpful by 29 % for fatigue and antihistamines were rated helpful in 22 % of patients who took LDN.