Recovery from crippling back, neck ,pelvic & genital pain/numbness, twitching, gastro issues & more

Hi everyone,

I am longtime lurker and now first time poster! I am here to share my recovery journey to offer hope, encouragement and assistance to those with particularly challenging TMS. As someone who is very affected by symptom influence, please be careful reading below.

I have had TMS my whole life and was raised by a parent with severe TMS and Munchhausen Syndrome. When I was 6 my tonsils we're removed because of a false diagnosis of severe asthmas (I was actually having panic attacks). I had a very traumatic early childhood and developed a rich imagination to help withdraw from reality and then fell in love with my lifelong coping mechanism/outlet, exercise. Each physical symptom would slowly lead to the next, asthma was replaced with OCD/withdrawl and anxiety which then became episodes of back pain beginning in college and reoccurring every couple of years throughout my 20's. The back pain always eventually went away and so I never fixated on it too much. I mostly dealt with undiagnosed anxiety which I would medicate with alcohol and lots and lots of exercise. Skateboarding, snowboarding, biking, hiking, basketball etc. Throughout this time I was able to mostly stay away from doctors. During my 2nd or 3rd back pain episode I got an MRI and was told I have a back of a 45 year old. I was amazingly able to ignore this ridiculous and reckless diagnosis and continue high impact sports for 12 more years without seeing a doctor or having a major episode of pain.

Right before the pandemic hit I begin to experience numbness and tingling in my left foot. I saw a doctor about it who was only interested in asking me about my anxiety and suggested I try xanax. I panicked and thought he was just trying to push drugs on me. Then March 2020 arrived and the tingling went away and I forgot all about it. A few months later the tingling/numbness came back and spread to my left arm. I saw more doctors and got nowhere fast. Then I forgot about the symptoms again until a few months later the left side of my face started to tingle and go numb. At the same time I had a pretty bad nasal infection that wouldn't go away. I panicked and started getting lots of tests. EMG, EEG, Cat Scans, MRI's blood tests. Everything came back negative. At this point the tingling had started to become sciatic pain. I saw a chiropractor 3 times. Each time the pain and tingling went away, then came back worse until I woke up with a tight back, took 3 steps and my back went out just like it had in my 20's. I actually was comforted by this, knowing that these episodes had always cleared up after a week or so. Except this time it didn't. The pain stayed, would improve, then get worse. I also started having panic attacks. I kept seeing more doctors and finding nothing. The pain got so bad I couldn't make it to the end of my driveway some days. I was barely eating, desperate to lose some weight and convinced a very very slightly herniated disc shown on one of the many mris was the culprit behind the pain. Then one day the pain subsided, finally. That night, I started experiencing shooting pain in my hands and cramping of my hands. The tingling in my foot came back and it started to go cold. I panicked again and saw a new neurologist who suggested I might have lyme disease. I got several tests. Two negative, and one false positive. I started taking antibiotics for the lyme anyways and my ears started ringing. I realized there was no way I had lyme disease and stopped the medication. Shortly thereafter My legs and arms started twitching and my genitals started to ache with alternating shots of pain. I panicked even more and saw a rheumatologist and got a nuclear bone scan and the most expensive and extensive blood test available. Everything came back negative. The twitching didn't stop and I began to spiral into dr.google doom and gloom diagnosis holes. I would become convinced I had ALS or MS and then snap out it. A month or two later, the twitching calmed down and was replaced by intense chest pain, difficulty swallowing and gastrointestinal dysfunction. The stomach and chest pain went on for about a month until I had a bloody stool. My GP sent me to a gastroentologist, who promptly ordered a colonoscopy. My terror increased and as I took the moviprep on the day of the colonoscopy (if you know, you know) my tension got so bad I started to loose feeling in my genitals. I was terrified of being put under and being in the hospital during covid. I completed the colonscopy with a clean bill of health. The next day I lost about 80% of feeling in my genitals. I was convinced something had been damaged during the colonoscopy or that I had cauda equida syndrome. I rushed to the hospital and got 3 more MRIs, all came back clean. Some actually didn't show the small herniations shown on those taken 3 months before. At this point my marriage was becoming severely strained. My wife could see what was going on, but had no framework for convincing me otherwise and I was completely despondent and started having very dark thoughts. I was so scared I would never get to do sports again (my cherished coping mechanisms).

Then, 9 months ago, amazingly a friend of mine randomly texted me and mentioned that a very science oriented/woo-woo skeptic friend of his had just cured his lifelong back pain by reading a book. He gave me the name of the book. I don't know why, but for some reason I immediately downloaded the book Healing Back Pain and I read it cover to cover. I had never read a self help book before and I had absolutely no understanding of mind body syndromes or psychology in general for that matter. About 20 pages in to reading I knew this was it, Dr. Sarno was describing me to myself and speaking directly to my experience. I immediately consulted with my wife and we both cried with joy. As a classic TMS-er I then became obsessed with TMS and read all the books and did multiple guided journaling programs. At the same time I had been seeing a therapist who had been subtly hinting that I had a mind-body issue for several months. At the beginning of every session before I discovered TMS she would point out that I often noted that my symptoms we're reduced or gone after our sessions. My therapist had not heard of Sarno or TMS but did not need a special name or theory to explain what I was going through.

Over the last 9 months I have battled the symptom imperative and many many many extinction bursts. I have journaled, journaled too much. Consulted this wiki, consulted it too much. I've had totally normal months, and difficult months. Good weekends and bad weeks, bad weekends and good weeks, bad vacations and good vacations. Up and down, left and right but always better and better. About 3 months after reading Sarno and Steve O I realized I was unfortunately not going to be cured by just reading their books and journaling. Though I continued to improve I realized I needed some advanced guidance. Luckily I found Kevin Viner's excellent book The Mind Body Syndrome: A Path to Recovery and Freedom. Kevin's story spoke to me directly and he was gracious to enough to exchange emails with me during my low points. Kevin's book helped eliminate any lingering doubt about my TMS and helped me to understand the deeper meaning behind TMS.

 

You have been through the mill....! But recognising that you have tms and those character traits is so good.... the rest is adjustment.... you can adjust what you do and how you do it. Regulate how much time is spent on healing - and how about some 'fun' time, some 'time to spend in nature' some quality time spent with your wife....?
Us tmsers are so good at going overboard.... ! Just make sure you put some balance in - you are well on your way!!

 

wow~ quite a story. i relate to a lot of it. especially the feeling that a ton of symptoms are all happening at once, or like wack-a-mole, the minute one leaves another pops up! but you’ve been doing the inner work and that’s great. every story like this helps us all on our healing path. thank you!

 

H

Hi! I have so many symptoms too how do u feel?

 

I would go through the whole experience again if I had the choice. I’ve grown tremendously internally and by all accounts I’m actually in better physical shape than before all these symptoms arrived. I am more active than ever! I do have the occasional symptom, (almost never pain) from time to time but very little fear.

 

Than

Thank you so much ! So your symtoms improved a lot too?

 

Massively! And my anxiety is basically gone, for the first time in my life.