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Tild has recently developed POTS alongside previously existing Chronic Fatigue Syndrome and CPTSD. They need help in raising funds for treatments.
Tild would like to access a number of treatments including Acupuncture, Massage and the Mind Body Reconnect programme. These specialist treatments focus on addressing imbalance in the Autonomic Nervous System and help to gradually bring the body out of fight/flight response.
For more info on diagnosis, science, current research and the specific programmes see below.
Acupuncture sessions - £65 x 19 sessions - £1235
Massage - £75 x 19 sessions - £1425
Mind Body Reconnect - £90 x 15 sessions - 1350
Total £4010, which should cover about a year of treatment.
Anything over this will go towards, taxis to and from treatments, and other needed items like supplements and compression stockings.
I developed Chronic fatigue syndrome (CFS) in 2017, following an extremely traumatic violent event. Since then I have relied on psychotherapy and herbal medicine to manage. Three years ago I raised funds for massage, which turned out to be a pivotal factor in the improvement of my CFS and CPTSD symptoms. I received massage for about 10 months, and it both greatly improved my energy levels and alleviated trauma symptoms.
In the year or so since the massage ended I have been well enough to travel and get involved in various community projects, though over time my functional ability did slowly decrease again. Then in April this year I caught a flu virus and everything changed.
All of my CFS symptoms returned in full force and did not resolve themselves or wear off after a few days, as they might usually following a symptom flare up. Not only that, but new symptoms appeared: the flu can trigger Postural Orthostatic Tachycardia Syndrome (POTS) by causing the body's immune system to overreact and mistakenly attack healthy tissues, particularly affecting the autonomic nervous system and blood vessel function. This immune response can disrupt the normal regulation of heart rate and blood pressure.
My list of daily symptoms includes:
- Hyperarousal, which involves the body's fight-or-flight response being overly sensitive and active, even when there is no immediate danger.
- Persistent and debilitating fatigue that significantly impacts daily life and is not relieved by rest.
- Heart palpitations, dizziness, lightheadedness and chest pain.
- Difficulty with concentration, memory, thinking and problem-solving. Sensitivity to light and sound and other sensory issues.
- Imbalances in neurotransmitters like serotonin, dopamine, and adrenalin, causing depression and anxiety.
- Insomnia, nightmares and interrupted sleep, excessive daytime sleepiness and unrefreshing sleep.
- Post-Exertional Malaise, which is a flare-up of symptoms after even minor physical or mental exertion, with a delayed and prolonged recovery period.
- Nausea, lack of appetite and gastrointestinal issues.
- Muscle pain and weakness, joint pain, nerve pain, headaches.
I am significantly impacted by all of this, and my capacity to function is greatly reduced. I can barely leave the house; a 10 minute walk to get groceries will take days of lying down to recover. I’ve had to quit all of the projects that connected me to people, and I’m feeling very isolated as a result. I’m struggling to take care of my basic needs.
None of my diagnoses have any cure that is recognised or provided by the NHS, and currently there are no licensed medications for their treatment. The NHS offers cognitive behavioural therapy (which I have accessed) aimed at changing how you think about your condition and some meds aimed at symptoms, such as pain relievers, antidepressants and blood pressure medication.
Despite years of trying I have been unable to access trauma therapy via the NHS in Bristol, but I do see a private psychotherapist and medical herbalist.
All of my symptoms are a result of Autonomic and Central Nervous System Dysfunction, which can be hugely relieved or even entirely cured over time via treatments that are not available on the NHS. I cannot afford to pay for them with the benefits I receive, as I am already paying for therapy and herbal medicine.
I plan to access acupuncture, massage and the Mind Body Reconnect programme with any funds raised.
Thanks for your support X
Info on my diagnoses and research on treatment efficacy
I am currently navigating three chronic invisible conditions.
- Complex Post Traumatic Stress Disorder (C-PTSD) is a condition that can develop after prolonged and repeated exposure to trauma. It shares some symptoms with PTSD but also includes additional difficulties. In C-PTSD, the Central Nervous System undergoes significant alterations, particularly impacting the amygdala, hippocampus, and prefrontal cortex. These changes can lead to heightened physiological responses to stress. The Hypothalamic-Pituitary-Adrena (HPA) Axis, which regulates the body's stress response, can be disrupted by trauma and chronic stress. This dysfunction can manifest as both heightened and blunted cortisol responses, impacting mood, sleep, and other bodily functions. Long-term dysregulation of the HPA axis, can contribute to a cascade of negative health consequences, including Hyperarousal, CFS and POTS.
- POTS is a condition characterised by an abnormally large increase in heart rate upon sitting up or standing. POTS is a form of dysautonomia, meaning it's a disorder of the Autonomic Nervous System. The ANS controls involuntary functions like heart rate, blood pressure, and digestion, which are all affected in POTS.
- Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME) or ME/CFS, is a complex, long-term illness characterised by extreme fatigue that is not improved by rest and is not directly caused by other medical conditions. It is a neurological condition that affects multiple body systems.
Here are some references for the efficacy of the treatments I plan to access on the conditions I have.
Refs for acupuncture
“Acupuncture and moxibustion has great potential in the treatment of CFS. Our network meta-analysis results of existing clinical trials show that acupuncture and moxibustion are particularly effective and safe.”
Effects of Acupuncture and Moxibustion on Heart Rate Variability in Chronic Fatigue Syndrome Patients
Acupuncture excelled in regulating the immediate effects of Heart Rate Variability, while moxibustion excelled in regulating long-term effects.
Efficacy and underlying mechanisms of acupuncture therapy for PTSD
“The meta-analysis […] concluded that acupuncture treatment had a clear effect on improving symptoms in patients with PTSD, especially in the short-term and long-term effects of improving PTSD symptoms: health-related quality of life, functional status, depressive and anxiety symptoms, sleep quality, and adverse events.”
Refs for Mind Body therapies
“mind-body therapies modulate autonomic function and indicate the utility of Heart Rate Variability in assessing potential mechanisms by which the therapies exert beneficial effects on stress and, potentially, inflammation.”
A Systematic Review of Randomized Trials of Mind-Body Interventions for PTSD
“Mind-body interventions may encourage tolerance of distressing physical and emotional states for individuals with PTSD and promote approach-oriented coping that can empower individuals to engage in healthy lifestyle habits. Furthermore, these interventions may reduce persistent hyperarousal symptoms that perpetuate physical and psychological dysregulation and thus initiate a positive cycle of enhanced health.”
Ref for massage
The effect of massage on patients with chronic fatigue syndrome
“Our research findings suggest that massage therapy has a significant therapeutic effect on CFS, avoiding adverse reactions and improving fatigue symptoms.”
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