In need of dire help & support

This is a long post, but it just flew out of my chest this way and I did not want to change it. I would appreciate it if especially those, who have walked the path of pain and illness and came back from that path to better and happy days, could give some support. You would be saving a soul.

I am a 33 year old guy, father to a 3 year old son living as a nuclear family in a country other than our own as immigrants.


I have TMS, had it my whole life most likely.


I grew up under tremendous pressure to excel at everything I did as a compensatory mechanism for my parents' failures in their own lives. Felt all kinds of worth, respect, and love I was shown as a result of any successes I achieved and not just because I was their child. I did not have a big family as it was 95% nuclear family with me being an only child.

Started having proctalgia fugax when I was around 10, which was very seldom. It is having sudden cramps in your rectum basically. Then migraines at 20 of age along with IBS and haemorrhoids with the latter two not being very serious (my father has these too, he had ulcerative colitis for a couple of months when he was young, and now since last 10 years Rheumatoid Arthritis at age 62).

I always felt the pressure to excel at everything I do, until I did not. And I just managed to let something go in high school as I was in a dormitory away from my parents. Letting things go, meditating daily, listening to music, reading tons and tons of books, falling in love, exploring a new city, etc., and all that away from my parents made me feel great. I felt relieved, happy, and content even though depressed at times.

Since I was 20 years of age, one after the other, the symptoms I mentioned began to come at me.

The list grew more. I had a cold for example and the cough would not go away for 2 to 3 months. Even got an allergic asthma diagnosis at some point. It went away by itself though.

Then I had reflux issues, heartburn, IBS, etc.

The more I was stressed, the more frequently I had migraine or any other symptoms.


At age 28, before moving to another country. I went for a simple nasal septum correction surgery. Following this, the antibiotics that were given to me basically pulled a trigger and everything I knew came crashing down.

I started having intense anxiety, panic attacks, restlessness, agitation, insomnia, muscle jerks, muscle twitching, sweating like mad, heart palpitations, stiffness all over the body, losing weight, nausea, tinnitus, brain fog, visual disturbances, weight loss of like 20% in a matter of 2.5 months. ALL AT ONCE.

As you might imagine, this prompted me to frantically look for a cause. Went to this doctor and that. Suspects were all kinds of cancer, autoimmune diseases, bacterial infections (like TB too), neurological diseases, etc. Of course, I also wanted to have some control and researched these symptoms, which fuelled more anxiety as I was sure it was this deadly disease. When it was proven it was not that, I jumped to another dreaded disease.

Nothing came up except one very special test showing I had Lyme Disease. I was so happy to have found something concrete that I could fix. I started antibiotic therapy and started gradually feeling better. When I went off of the antibiotic symptoms started coming back. Some months later I did a second round with antibiotics and this time the results seemed to stay but I had muscle twitching still going on as well as some aches and pains.

After a while, I stopped paying attention to symptoms and just focused on living my life, which has also become quite a routine in a good way as that routine gave me a sense of security, belonging, and calm. I felt better and better with time passing by.

Some months later, having my son born prematurely, having a stressful time around this as we were also moving the house, and afterwards with COVID pandemic hitting the world, I suddenly had a fever, shivering (teeth chattering kind) and this familiar sense of doom creeping in. This all started after we were told to work from home.

Again, lost in a search for a possible cause I went back and forth between diseases like ankylosing spondylitis, reactive arthritis, bowel diseases, autoimmune stuff etc. MRIs, blood tests, other kinds of tests and just the insignificant stuff like herniated discs, etc., and nothing that could explain the whole mess.

I visited a naturopath, who tested my gut flora through some stool tests and we saw that my pancreatic enzymes were severely low, pretty much non-existent along with a really low secretory IgA (which is the first line of defence on mucosal surfaces throughout the body and can and does get low due to chronic stress).

I started on pancreatic enzyme replacement therapy and did manage to ignore the nagging thought in my mind, which was asking "Why is my pancreas not working?" for a couple of months.

After a while though, this thought came to prominence, and I did have an endoscopic ultrasound and an abdominal MRI both of which again showed nothing out of the ordinary. Yet stool tests consistently showed severe deficiency in pancreatic enzymes.

At the same time, I started paying more attention to bodily symptoms, be it palpitations, sweating, this pressure around my neck as if someone is strangling me (which oddly made me hold or cover my neck to relieve this sensation), sleep problems, swallowing difficulties, aches and pains etc.

I spiralled down and down despite trying to remind myself that these are all TMS. I even started therapy (EMDR) and made some progress, but this fear always kept creeping back on to me and bringing me down.

As of today: I have been in fear of the world relaxing from COVID despite the virus still existing as I got myself unbelievably afraid of long COVID and hence we lived pretty secluded during the first years. Now my son started day-care and we already had 6 or 7 upper respiratory infections, during all of which I got scared out of my mind as I kept thinking "This time it is the one". I am still scared of this very much and it affects my daily life, work life, social life, everything. My sleep also got worse and worse.

I also started getting cold and aching fingers this winter (I had some sort of cold and aching fingers and toes every now and then in the last few years, but I always chalked it off to stress etc.) and I realized my finger pads are also somewhat pruned.

I knew this could be Raynaud's so I went to Rheumatologist and got tested for tons of stuff. Well well, this time I actually had ANA positive result, despite it being negative all the time it was tested previously. It also came at a rather moderate level of 1:320. As you might imagine, having Raynaud's like symptoms, GERD and stomach/oesophageal issues and this ANA positivity made me (and also my PCP) think of Systemic Sclerosis. All other specific antibodies for scleroderma or lupus or Sjogren are negative but I got referred to a university hospital (appointment is in a few months) and also getting a specific examination next week (microscopic check of capillaries – nail folds) for determining the capillary changes associated with Raynaud's or something underlying.

I am scared out of my mind as I think I had this fear and anxiety for so long that I broke my body. I do not feel safe in my body. This ANA positivity just threw me down from the edge of the cliff, I have been living my whole life on. I am scared I will be reduced in capacity and function, despite my anxiety doing a pretty darn good job at that anyways. I am scared that I will not live a fruitful life (again, anxiety already makes sure of that anyways) and not be there for my son as he grows up. All this fear, frustration, ambiguity, desperation, guilt, and shame makes it worse than it might have been on its own.

Can I please talk to someone who has been on this path and made a recovery? I have read very similar symptoms and experiences from Dorado's post.

Is there a chance to even cure or heal from anything auto-immune with TMS? Or is this the point that it is too late?

I would appreciate it a lot. I try to function as best as I can but keeping all of this bottled up in me makes me so tired.

 

Five doctors thought I had an autoimmune disease (no specialist diagnosis though, I gave up on doctors before they finished testing) and I fully recovered using the TMS method. A lot of heavy duty journalling was needed. They thought it might be Ankylosing Spondylitis Crohn's or celiac. At my worst I was wheelchair bound with pain and only eating 1000 calories a day of a ridiculous diet for 4 months because almost every food set me off with intolerances etc. There was a risk of death around this time. I had many of the symptoms you have, heartburn, IBS anxiety insomnia and chronic pain (too many others to list here!). I too had a stool test, everyone wanted my stools lol, they found high IgA antibodies (which I believe is more consistent with autoimmunity than low inflammation). I cannot say anything definitive about your case but it does sound, shall we say, familiar. In my experience, worries about symptoms and things currently going on, are often a distraction from much deeper more personal traumas etc in the past. Fear lessens the deeper you go into the unconscious. Also, Sarno could turn his allergies off. My hay fever hardly bothers me now, which points to influence on the immune system. You can find a more detailed story of my illness and recovery here: https://www.tmswiki.org/forum/threads/recovery-from-back-pain-foot-pain-stomach-pain-intolerances-possible-severe-autoimmune-disease.26991/ (Recovery from back pain, foot pain, stomach pain, intolerances, possible severe autoimmune disease) also check out lowella's recovery from MS in success stories.

 

I have read your story. Thanks for replying and sharing. This part here kind of sums up the most recent thing I am going through.

In hindsight, all the doctors and osteopaths I saw did more harm than good. After every appointment, my symptoms got worse. I don’t regret not seeing an NHS Rheumatologist. I’m glad I cancelled my X-ray appointment, especially after reading Sarno. If they’d found an abnormality, I could have got diagnosed with god-knows-what, spiralled even further into hell, and found it even harder to believe in a psychological cause, even though as Sarno has established, many spinal abnormalities don’t necessarily cause pain. The provisional diagnoses and prognoses I received, though they may have been correct, became self-fulfilling prophecies and made things even harder to shake off. They made me think what I had was incurable and yet, whatever it was, it is now cured. That was my experience, anyway, and that’s all I can talk about. Of course, you must make your own decisions based on your own case. Don’t do it just because I did. Sometimes a doctor is necessary.

This looming diagnosis of whatever autoimmune this is and all the tests etc. make me nervous. For me, the reason I went for them is in fact seeking reassurance but as a result this time failing to find it and instead finding quite the opposite. I honestly have not expected anything to come back positive, least of all the ANA marker. I kind of wish I never had it tested but I think I could not have let it slide by.

This controlling, measuring, assessing approach is bound with overthinking to the extreme in many areas of my life unfortunately. It is mostly at a subconcious level at this point.

I took a look at SEP and tried journalling too but I could not stick with it. I am not sure if I really want to unpack the whole trauma package. I want to just live life. Unfortunately, at this point, I might have to "do the work" that I have been avoiding all the time.

How did you start a typical one of your journalling sessions? Did you focus on the day to day emotions or go for something specific you knew was traumatic from your past?

 

The SEP will guide you through journalling. It reaches into the past some, and you do not have to necessarily stay there. It was just the beginning of your thought patterns, your reactions, the way you process stress, your avoidance. You really go back only to witness the patterns and to see how, with your personality, it creates your current mindset which isn’t working for you. The entire reason you have symptoms is by avoiding the hurts and hardships, but they are simply part of life. Understanding that you are safe even in tough times is crucial to healing. The SEP holds you accountable for doing the work, and if you are avoiding, I highly recommend you do it. It is not easy. It takes time, and with family obligations, it may take more time and that’s ok! Go slow but do it.
Avoiding and “living life” ( are you truly living or going through the motions -surviving?) is not serving you. You can absolutely do this.
Rebecca Tolin is a mind-body coach who was also diagnosed and lived with a myriad of auto-immune diagnoses, but it was a trauma in her adult life that triggered her tms. Rebecca has a free somatic meditation for safety, found on her website.
Dr. Tovah Goldfine specializes in auto-immune as TMS. Check out her website for good information!
Both are great resources besides the SEP. I also think Gabor Matte’s book could be helpful. Be gentle, start exploring and working your way into this process. Know that the resistance is just another part of TMS, it’s not YOU, it’s just a fearful mind. It’s not forever.

 

I recommend that you go through with whatever tests you have scheduled, just to be sure, but I would advise you not to stress about it too much. I find with journalling the hardest part is knowing what exactly in the unconscious is causing symptoms. So I made a list of the common life events (bereavement, divorce, demotion, new kid etc) and wrote about every one that applied to my case in detail, even if it was just the memories. Then I listened to my body. If I got symptom relief from writing about a particular event, I'd double down on that. If not, I'd look elsewhere. This trial and error approach doesn't rely on intuition. I found the day to day stuff tended to be used as a distraction from deeper events in the past.

 

Yes, I criticize myself so harshly with even some tendency to punish myself like being really hard on myself and rejecting pleasure. It is pretty much a leftover mechanism that I internalized from my parents' treatment of me.

 

Might I suggest looking into a cheap little book called Taming Your Gremlin. It’s all about that inner self critic, and how to begin to soften those limiting beliefs.