Coming to grips with TMS self-diagnosis

I think I have TMS, and this is my first post here. It is very long, since I feel the need to bare all! If any kind soul reads the whole thing and can relate to any of my experiences, I would very much appreciate you reaching out. It would help me so much to know that others have been through any of the same things. (If you don’t want to read it all, feel free to scroll to my bolded questions.)

I have a history of general anxiety during childhood, including chronic constipation for years and fears about using the school bathroom, as well as fairly frequent headaches that turned into migraines in my 20s. I had a few mysterious ailments during my 20s, including a few episodes of anaphylaxis that could never be traced to a cause.

I have a family history of somatoform-type illnesses, including my mom (fibromyalgia, IBS, migraines, and bulimia as a teen) and my sister (IBS, and bulimia as a teen).

I eventually got over a lot of my anxiety, but I think it went “dormant.” In college I became a pathological procrastinator. I am a perfectionistic, obsessive, over-thinking type of person who wants to do well but can never make decisions.

I had never considered the mind-body connection until I had a complete breakdown about 6 months ago (age 29). Around the same time that I finally decided to go back to school and pursue a “real” career (after years of traveling around and seasonal jobs after college), I developed back issues for the first time in my life. It started out minor, as lots of knots and tension in the upper back and neck, but then, increasingly, spasms in my back and strange, disturbing pain in my actual spine, not muscles. I also gradually lost my appetite.

One day the pain drastically worsened until it was the worst pain of my life (and I’ve broken bones before). My entire spine from top to bottom was burning with fire, my back was spasming, and the muscles in my legs were twitching uncontrollably. Soon my entire body was trembling and I was hyperventilating in complete terror and agony.

I went to the ER, and the Dilaudid they injected didn't even get rid of the pain completely! I got blood tests and MRIs of my whole spine. Aside from a minor (“normal”) bulging disk, everything was healthy. I went to my regular doctor and several specialists during the next few weeks, and they tested me for more things including tick diseases. Everything was totally fine.

During this time I developed new symptoms: dizziness/vertigo, strange sensations in my legs, difficulty breathing normally, feelings of derealization (like I was in an alternate reality), and episodes of panic. I would feel panic come over me and knew that it was coming from inside my brain but I couldn’t stop it. I had to take Percocet for my spinal pain, but it gradually got better. I had to force myself to eat.

During these few weeks I felt depressed and terrified of what might be happening to me. It was during my online research that I came across John Sarno’s Healing Back Pain. I listened to the audiobook and started to get on board with the idea that this was a psychosomatic illness.

I moved to a new city in November as planned and started this new chapter of my life. But for the past 6 months I have continued to struggle. My spine pain is completely gone for the most part, but I have other symptoms. To name a few... I get episodes of “anaphylaxis lite” sometimes, where I will have sudden stomach pains, diarrhea, vomiting, lightheadedness, intense sweating, and itchy hives on my palms. It resolves fairly quickly and within an hour or two I am back to normal. I get itching skin all over, with or without hives. I get episodes of panic.

Most of the time, when I’m not having an “acute episode,” I am functional and can pretend to be normal, but I don’t feel myself. Despite my history of anxiety, I have always had an appreciation of the little things in life, and have always been happy because of it. I used to feel the world was magical, but now, most of the time, I have a vague sense under my skin that something is wrong on an existential level, but rationally I know nothing is wrong. I just have this low-level fear response coursing through me all the time for no reason.

In addition to Healing Back Pain, I read The Mindbody Prescription. I do believe my problems are psychosomatic. However, I am a skeptical person by nature and find myself raising my eyebrows at certain overreaching claims Sarno makes. I want to fully benefit from the truths in his books, but I do have some hangups that might be impeding my progress. Any suggestions for making better progress with TMS? I especially welcome input from likeminded evidence-based skeptics!

I also started reading Claire Weekes’ Hope and Help for Your Nerves. I really like her approaches for panic attacks, especially the idea of the “second fear”—but she also has some strange suggestions, and I don’t like that she insists that there is only a narrow range of symptoms accompanying “nervous illness,” since I have quite a few symptoms that she does not mention—including back pain, of course.

Maybe I should just take the good from Sarno and Weekes, and leave the bad. Somehow that’s easier said than done for me. Does anyone have additional book recommendations?

I have started seeing a therapist, and she also thinks I have anxiety of a somatoform nature, but she doesn’t seem to have many helpful things to say. Does anyone have suggestions for finding a therapist who is more experienced in these body-focused problems?

Has anyone successfully used an SSRI such as Prozac to help them overcome somatoform anxiety? I have been considering it, but reluctantly.

Finally, I have been suffering from lower back pain the past couple months, a new thing for me. It feels much different than the strange spinal pain, which was clearly psychosomatic (in retrospect). This lower back pain just feels like muscle tension, and it hurts the most with forward bending motions. My hip flexors and butt muscles also feel very tight and sore.

While I do think the cause is probably stress, I was wondering if it would be okay to do stretching and strengthening exercises. When I had anxiety-induced childhood constipation, I took Miralax, which really helped, and I eventually got over the constipation on my own. I am wondering if I can take the same approach to the back—work on it physically, even though I know Sarno discourages physical interventions. I have seen some books online that seem to take a compromise approach (both physical and psychological), such as Healing Back Pain Naturally: The Mind-Body Program Proven to Work, by Art Brownstein.

I welcome all thoughts!

 

Hey, Ramonaquimbly,
Welcome! Check this link (from the main page) which contains a list of TMS specialists. They're listed by region.
https://www.tmswiki.org/ppd/Find_a_TMS_Doctor_or_Therapist (Find a TMS Doctor or Therapist)

 

As an evidence-based skeptic myself, I've found it helpful in these early stages (for me, starting on the TMS journey in January) to read Sarno's Healing Back Pain (as you've done) and later, with more experience, to reread it. With some experience, I've found passages I read the first time hit home more deeply on a second read. As some people recommend, consider keeping an Evidence Log. When you have a success, even a small one, write it down in your log. When doubt hits, it's helpful to have that as positive reinforcement for reference. When I was starting out, Gordon Allan's Pain Recovery Program (21 short, sweet sessions; link on the main page) really gave me a helpful and encouraging overview of TMS and what sort of attitude to ground myself in as I proceeded. I went through it about five times. He does a nice job of anticipating the stumbling blocks of people new to figuring this stuff out. And I'm getting some mileage out of simply being kind to myself and not trying to GET THIS FIGURED OUT YESTERDAY! but just going at it steadily, breathing easy, staying with it. I'm really intense and focused which can slide over into brain-frying obsessive if I let it. So it works for me, at this stage, to think about TMS stuff a lot, but to recognize when I need to let it go and focus elsewhere. Today, I thought that focusing on one's pain as a way to fix it is like leaning in toward your computer monitor to hear your desktop speakers. The better place to focus is on the mind, the unconscious, what its up to. I find when I do that, the pain takes care of itself (as it did today a few times). I attend to my emotional life, conscious and unconscious, through a TMS lens, and I don't worry about what the pain's doing (usually) . That's been helpful to me.

 

Steve Ozanich's The Great Pain Deception was extremely helpful to me. When I finished it, the book weighed an extra two ounces for all the highlighting I added to the pages. Howard Schubiner's Unlearn Your Pain got me going on journaling, though the book's structured approach ultimately was too prescriptive for the way I go at learning. But he really helped awakened me to value of journaling as a way to understand what's going on down under. I used him as a point of departure and developed my own ways of writing and organizing my thoughts.

 

For me (ME), I've set aside all my massage tools and mats and therapeutic stretches (I have HUNDREDS of those photocopies from PTs) meant to strengthen/fix/improve my back, shoulders, hips--you name it. As Sarno says, it sends a counterproductive measure. I do stretch a bit to loosen up in the morning, but I do so because it feels good and I tell myself my back is fine. I love to exercise. I do it because I love it and I want to be strong, not because I want to intervene to fix a defective body part.

 

Good luck to you. I'm glad you're here!