1. Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
    Dismiss Notice
ARWR
Last Activity:
Feb 25, 2024
Joined:
Nov 3, 2022
Messages:
1
Likes Received:
0
Trophy Points:
9
Gender:
Male
Location:
UK

Share This Page

ARWR

New Member, Male, from UK

The one you feed. Dec 6, 2022

ARWR was last seen:
Feb 25, 2024
  • My Story

    I'm currently in my early 30s and have dealt with a range of symptoms that could be attributed to TMS throughout my life.

    These have been more consistent and debilitating over the last 10 years, and particularly tricky over the last 2 since contracting Covid late 2020.

    Childhood symptoms included
    Unexplained rashes, vitiligo, migraine headaches, anxiety, depression, frequent joint injuries, mouth ulcers, IBS-D.

    Symptoms into my 20's:

    Severe mouth ulcers, IBS & food sensitivities, back pain + stiffness, joint pain & subluxations (ribs, wrists, ankle), chronic fatigue, anxiety (social, general & health), depression & suicidal thoughts, insomnia, PEM & flare ups of the above the day after exercise/stress.

    I spent most of my time, energy, and finances in my 20s trying to get the the root cause of the health stuff (with limited success). I based my career around it, starting a website and becoming a freelance writer in the wellness space.

    I saw various rheumatologists, gastros, dieticians, nutritionists, naturopaths, chiropractors, osteopaths, traditional Chinese medicine doctors... I went the wholistic route and tried the list of diets, movement modalities, self-help books, supplements, mindfulness-based practices.

    Mouth ulcers, fatigue, and gut issues were the biggest challenge in my early 20s, morphing into joint pain through my mid to late 20's.

    Crohn's was suspected in 2013 and tested for numerous times over the years with inconclusive results, only to appear on my medical notes as a diagnosis in 2018 (despite n further testing).

    At the same time I was diagnosed with Seronegative Spondyloarthropathy. I felt a small relief at the time to finally have a name for the pain I'd been feeling, but it still didn't sit quite right with me.

    I don't fit the typical symptom pattern, and don't have the HLA-B27 gene that 90% of people with the condition have. Minor sclerosis around SI joints was seen on one MRI, but no evidence of active sacroiliitis on two separate MRIs.

    I now realise that I fit much more in with the pattern of hypermobile EDS but have not had an official diagnosis. Other doctors have also shared this suspicion.

    Post-Covid (Dec 2020 - present) symptoms
    Covid triggered an exacerbation of fatigue, pain, gut issues, sleep issues anxiety, and depression, along with POTs, MCAS-like symptoms, brain fog & poor memory, pain & swelling in hands & feet, tinnitus and cannabinoid hyperemesis symptoms.

    I hit rock bottom a few times during this time. Not fun. I went from being able to somewhat manage and work part-time for myself, to being largely bedbound, on disability payments, unable to work, and largely isolated from friends and family.

    One saving grace was that I was accepted to try medical cannabis for the chronic pain. For a while, this helped somewhat, but 9-10 months in I began developing an intolerance (symptoms of cannabinoid hyperemesis syndrome) so had to stop the thing that had provided me the most physical and mental relief I'd found so far. Not ideal.

    Discovering TMS
    I stumbled upon the Curable app and Dr. Schubiner & Sarno around May/June 2022. I've also since discovered the work of Nichole Sachs, Dan Buglio, Dr Peter Levine and others, and have worked with SIRPA practitioners.

    I right away recognised that I have many of the typical TMS traits - highly sensitive, perfectionist, people pleasing, feelings of inferiority, a tendency to catastrophise and hold grudges etc. I also identified a long old list of childhood adverse events and stressors into adulthood.

    I saw some early success after putting in the work - talking with my therapist, journalling, meditating, and endeavoring to not be scared of my symptoms.

    I had three weeks of minimal symptoms and was able to start exercising a little and became much more independent. A big win!

    Symptom Imperative & Doubts
    After the initial good period, symptoms flared seemingly out of nowhere and began shifting around. I had new, scary symptoms including kidney pain and some scarring observed on ultrasound, testicular pain with hydrocele & epididymal cyst, interstitial cystitis, and a big increase in state anxiety and depression.

    My belief began to waver here, and I began to really struggle with the concept of what is in my control vs what I have to accept and live with. What is TMS and what's purely EDS/MCAS/autoimmune stuff?

    I've found acceptance again at various stages, but as anxiety is one of my trickiest symptoms, that bit of doubt easily creeps in and takes over.

    That's kind of where I'm at right at the moment. Up and down, a little stuck between making progress and feeling hindered by doubt and fear. I thnink I'm getting there slowly, and have been able to do many more things outside my comfort zone compared to this time last year.

    My biggest current challenges:
    • Minimizing the fear & frustration with symptoms and getting to a state of indifference. This is improving.
    • Maintaining belief that this is something I can influence (particularly when anxiety is present) and not actually an autoimmune/inflammatory disorder
    • Figuring out what it is I'm working toward as I rebuild
    I feel like I've lost many parts of myself over the past few years, and I often find myself feeling stuck and unsure of what the next step is. How do I begin to reintegrate? How do I start getting back to work and some form of social life? What does life look like from here?

    As I'm writing this, in November 2022, the anxiety and doubt are floating about, but I do get moments of clarity here and there in which I feel more hopeful. I'm trying my best to hang onto them and to keep moving forwards!

    2023 and beyond...

    While I know it's not wise to put a time frame on the healing, here I hope to be able to write about how I've made my recovery.

    It would be great to share the lessons I've learned on the way and the resources and ideas that have helped me become free of the symptoms and mental patterns that have been holding me back.

    Out of 'freeze' mode and into living again.
    1. Islander
      Islander
      How are you doing now
    2. ARWR
      ARWR
      The one you feed.
  • Loading...
  • Loading...
  • My Story

    Gender:
    Male
    Location:
    UK
    Diagnoses:
    Seronegative Spondyloarthropathy (although not 100% sure).
    Vitiligo
    Long Covid
    Suspected Hypermobile EDS (not confirmed)
    I'm currently in my early 30s and have dealt with a range of symptoms that could be attributed to TMS throughout my life.

    These have been more consistent and debilitating over the last 10 years, and particularly tricky over the last 2 since contracting Covid late 2020.

    Childhood symptoms included
    Unexplained rashes, vitiligo, migraine headaches, anxiety, depression, frequent joint injuries, mouth ulcers, IBS-D.

    Symptoms into my 20's:

    Severe mouth ulcers, IBS & food sensitivities, back pain + stiffness, joint pain & subluxations (ribs, wrists, ankle), chronic fatigue, anxiety (social, general & health), depression & suicidal thoughts, insomnia, PEM & flare ups of the above the day after exercise/stress.

    I spent most of my time, energy, and finances in my 20s trying to get the the root cause of the health stuff (with limited success). I based my career around it, starting a website and becoming a freelance writer in the wellness space.

    I saw various rheumatologists, gastros, dieticians, nutritionists, naturopaths, chiropractors, osteopaths, traditional Chinese medicine doctors... I went the wholistic route and tried the list of diets, movement modalities, self-help books, supplements, mindfulness-based practices.

    Mouth ulcers, fatigue, and gut issues were the biggest challenge in my early 20s, morphing into joint pain through my mid to late 20's.

    Crohn's was suspected in 2013 and tested for numerous times over the years with inconclusive results, only to appear on my medical notes as a diagnosis in 2018 (despite n further testing).

    At the same time I was diagnosed with Seronegative Spondyloarthropathy. I felt a small relief at the time to finally have a name for the pain I'd been feeling, but it still didn't sit quite right with me.

    I don't fit the typical symptom pattern, and don't have the HLA-B27 gene that 90% of people with the condition have. Minor sclerosis around SI joints was seen on one MRI, but no evidence of active sacroiliitis on two separate MRIs.

    I now realise that I fit much more in with the pattern of hypermobile EDS but have not had an official diagnosis. Other doctors have also shared this suspicion.

    Post-Covid (Dec 2020 - present) symptoms
    Covid triggered an exacerbation of fatigue, pain, gut issues, sleep issues anxiety, and depression, along with POTs, MCAS-like symptoms, brain fog & poor memory, pain & swelling in hands & feet, tinnitus and cannabinoid hyperemesis symptoms.

    I hit rock bottom a few times during this time. Not fun. I went from being able to somewhat manage and work part-time for myself, to being largely bedbound, on disability payments, unable to work, and largely isolated from friends and family.

    One saving grace was that I was accepted to try medical cannabis for the chronic pain. For a while, this helped somewhat, but 9-10 months in I began developing an intolerance (symptoms of cannabinoid hyperemesis syndrome) so had to stop the thing that had provided me the most physical and mental relief I'd found so far. Not ideal.

    Discovering TMS
    I stumbled upon the Curable app and Dr. Schubiner & Sarno around May/June 2022. I've also since discovered the work of Nichole Sachs, Dan Buglio, Dr Peter Levine and others, and have worked with SIRPA practitioners.

    I right away recognised that I have many of the typical TMS traits - highly sensitive, perfectionist, people pleasing, feelings of inferiority, a tendency to catastrophise and hold grudges etc. I also identified a long old list of childhood adverse events and stressors into adulthood.

    I saw some early success after putting in the work - talking with my therapist, journalling, meditating, and endeavoring to not be scared of my symptoms.

    I had three weeks of minimal symptoms and was able to start exercising a little and became much more independent. A big win!

    Symptom Imperative & Doubts
    After the initial good period, symptoms flared seemingly out of nowhere and began shifting around. I had new, scary symptoms including kidney pain and some scarring observed on ultrasound, testicular pain with hydrocele & epididymal cyst, interstitial cystitis, and a big increase in state anxiety and depression.

    My belief began to waver here, and I began to really struggle with the concept of what is in my control vs what I have to accept and live with. What is TMS and what's purely EDS/MCAS/autoimmune stuff?

    I've found acceptance again at various stages, but as anxiety is one of my trickiest symptoms, that bit of doubt easily creeps in and takes over.

    That's kind of where I'm at right at the moment. Up and down, a little stuck between making progress and feeling hindered by doubt and fear. I thnink I'm getting there slowly, and have been able to do many more things outside my comfort zone compared to this time last year.

    My biggest current challenges:
    • Minimizing the fear & frustration with symptoms and getting to a state of indifference. This is improving.
    • Maintaining belief that this is something I can influence (particularly when anxiety is present) and not actually an autoimmune/inflammatory disorder
    • Figuring out what it is I'm working toward as I rebuild
    I feel like I've lost many parts of myself over the past few years, and I often find myself feeling stuck and unsure of what the next step is. How do I begin to reintegrate? How do I start getting back to work and some form of social life? What does life look like from here?

    As I'm writing this, in November 2022, the anxiety and doubt are floating about, but I do get moments of clarity here and there in which I feel more hopeful. I'm trying my best to hang onto them and to keep moving forwards!

    2023 and beyond...

    While I know it's not wise to put a time frame on the healing, here I hope to be able to write about how I've made my recovery.

    It would be great to share the lessons I've learned on the way and the resources and ideas that have helped me become free of the symptoms and mental patterns that have been holding me back.

    Out of 'freeze' mode and into living again.