Day 1 New Beleif

I've just signed up to take part in the Structural Education Program.

In November, last year, I started to have tremors in my right leg, and in the past couple of months, the tremor showed up in the right hand. I recently had a neurological evaluation, which showed hyperreflexia and possible spasticity in my left leg. I was potentially showing signs of an upper motor neuron disorder. Both my mother and her brother have multiple sclerosis, so I've been down the rabbit hole lately, in a place of complete fear about having MS or something worse. I started to seek medical answers, despite having had such a hard time being taken seriously in the medical community in the past, due to the various pain and seemingly unrelated symptoms I've had over many years that doctors don't know what to do with.

As background, I have 20+ years of issues with pain, which has become widespread. This pain has shown up in various forms throughout my body. After the birth of my son in 2018, I was experiencing pelvic pain, bladder issues and prolapse, and last year I finally went to see a pelvic floor therapist. When I told her about my other symptoms (hip pain, fibromyalgia, myofascial pain syndrome, groin pain, multiple chemical sensitivities, and the leg tremor I had at the time), she told me that she felt I possibly had a neuromuscular issue, hernia, hip labrum tear and/or other physical problems, and she wanted me to see a host of doctors to rule out things before we got started on pelvic floor therapy. Other than the prolapse and bladder issues (which two different urogynecologist had differing opinions about), and a podiatrist, no tests have come back showing anything except low vitamin D levels and plantar fasciitis). I started taking vitamin-D for the deficiency; however, the cortisone shots in my feet and the splint I was supposed to wear at night only increased the pain in my feet.

Once the hand tremor showed up, I decided to finally go to a neurologist (on the behest of a friend who told me I needed to find out what was going on for my 2 year old son's sake). That led to 3 MRIs and nerve conduction studies, as well. Though I haven't had the follow-up appointment for the results yet, they have already shared my results online, which came back showing no signs of damage except bulging discs/degeneration in my cervical spine, which wouldn't account for all my issues.

Prior to seeing the neurologist due to the hand tremor, I had been having such pain and stiffness, I started to do research on muscle balancing stretches. I started a program which seemed to slowly help reduce my pain by about 40%. I felt I needed a bit better results, so I researched and find another similar program. However, the exercised were more stringent, and I wound up with sciatica down my right leg. I couldn't even go back to the original stretches that helped without severe pain. So I got back in touch with the PT who wanted me to see all the doctors to determine what was going on (I'd not gone back sooner due to the Covid situation). However the PT wasn't willing to have a session with me because of all my issues, and she just gave me advice on joining support groups and learning to meditate. I felt really lost.

During this time of trying to get a "diagnosis" I discovered an old write-up by a neurologist from several years ago that I'd seen. I was referred to him by another PT who thought I was showing signs of clonus (which can indicate an upper motor neuron disorder). I was seeing the PT because I had an ACL sprain, which occurred about a year after a fall down a staircase, which had also brought on more hip pain (though I'd suffered from hip pain before that accident). I also told this neurologist about my widespread pain and muscle stiffness. I felt these things were likely physical in nature and/or due to an underlying condition, though I knew they fluctuated with stress. But this neurologist, unbeknownst to me, had written up in my evaluation that I had a possible "conversion" disorder and that my abnormal "brisk reflexes" were typical for people with PTSD (which I have been diagnosed with since childhood). He prescribed me a year's worth of Lyrica, which I never filled, and sent me on my way with no answers except I have a hypersensitive nervous system.

When I saw this write-up recently, I felt judged and dismissed. I'd also previously seen my primary care doctor for sharp pain in my shoulder and ribcage that was severe after the birth of my son; I thought it was due to muscle strain from lifting him all the time. The doctor told me the pain was "in my head" and I needed to lose weight. I was worried I had a hairline fracture or something serious causing the pain. He just prescribed me PT (which never works for me so I didn't go). His lack of compassion made me feel like no one believed I was in legitimate pain. I'd had pain even when I was a healthy weight, so how was this "in my head". And if it was "in my head" then why was he also saying my pain was caused by weight gain (from pregnancy that I hadn't yet lost)? Is every overweight person on the planet in chronic pain - no, of course not! And the more recent rejection by the PT who wouldn't work with me and was also indicating my issues needed "community" and "mindfulness"... well, it just made me angry. I'd been laughed at or received rude responses by doctors in the past. It seemed no one was willing to see I had something underlying all these conditions and I really needed help with (and a "legitimate" diagnosis for)... right?!

Though I felt PTSD and stress exacerbated my conditions, I thought this was solely due to issues with being in "fight or flight" mode causing my body not to eliminate toxins well, which led to muscle cramping. I also through maybe I'd had toxic exposure, since I'd been allergic to most makeup, aluminum in underarm deodorant, adhesives in band-aids, etc., for years. But every time I've tried to change my diet and take measures to nutritionally support my body and reduce toxic burdens in my body, I actually don't feel much better. Maybe my digestion improves slightly, but not my pain, and there are new symptoms emerging every few months. I really was in fear that I had MS or another rare neurological disorder causing all my symptoms.

Though I work on the PTSD in therapy and have made strides, I've also been under a ton of stress in my career (at a very toxic workplace), issues in my relationship, and trying to raise my 2 year old while working from home during the Covid situation and do a high-pressure (now remote) job. I decided I needed to find someone who was willing to work with me on the physical issues and pain that have been getting worse and worse this year.

I finally found what I thought was the answer when I signed up for remote "PT' type sessions concerning my fascia system. I was told I have a rotated pelvis and my body is completely twisted out of alignment, which is causing my pain. Even though I went to a chiropractor when my hip pain was high during pregnancy, that didn't set me right, and it sounded like this was a permanent issue (almost like a scoliosis). I was told I have to stand, sit, bend, sleep, etc., in only certain positions on my right side to compensate for my twisted body, and I was told I'd have to do this forever. Oddly enough, the woman I worked with was so motivational and had somatic training, so I started to also work on techniques that activate the vagus nerve and work with the nervous system and "talking" to my body. So ironically, as much as this therapy was starting to ingrain the belief that I had a physical problem causing my pain (due to past falls, injury and "tension patterns" in my body), the therapy also reminded me of a book my mother had told me about maybe 10 or more years ago by Dr. John Sarno!

Though I don't think my mother ever ended up following Dr. Sarno's advice, she told me about the concepts at the time. In subsequent years, I'd sought out a therapist who worked with EFT (Emotion Freedom Techniques), and I experienced almost a 70% reduction in pain after doing several rounds of EFT on myself, related to past traumatic experiences. Still, when all the pain came back when I was in an abusive relationship soon after that year of pain reduction, I still didn't fully make the connection that this was entirely an emotional issue. Soon after I got out of that relationship, my family connections began to fall apart (when I wanted to face past trauma issues withe my family who didn't want to do this with me and decided to break ties). The trauma of family abandonment led to a crashed immune system, and the pain issues doubled. Year after year I've had flare ups and new symptoms, but I never knew what to do to get answers and make the pain go away. Though I love to research and am fascinated about topics on neuroplasticity and the wonders of the mind-body connection, I still sought an all-encompassing "answer" from doctors.

It is now so obvious that I suffer from TMS. I've spent so much money and effort over the years and most recently trying to solve the riddle to all my issues. I felt rejected and judged by the medical community, who wanted to dismiss me and leave me to figure this out on my own. Yet in a way, their feedback has shown me that the answers don't lie in western medicine - it really has nothing for me. Also, though I've tried many alternative therapies, I only ever got temporary relief. I now know that is because of the traits and beliefs I hold and the need to not feel what I truly feel or to judge what I feel and repress it, so that I don't make others uncomfortable. I've always wanted to be there for others to the Nth degree, so that no one has to feel the way I've felt, but I've never received that kind of compassion in the same way, and I've rarely given it to myself.

However, this year, all things have come to a head, and in the work I'm also doing with PTSD, I decided to look back into Sarno's theories. I stumbled upon Alan Gordon's TMS Wiki page and this program, as well as a host of other information on PPD/TMS. I've written a book here as a first step in showing myself that all symptoms point to the same diagnosis of TMS, not 20-some comorbid conditions! I also tend to intellectualize and try to "solve" and research so much, I think this is just classic TMS conditioning, trying to keep me distracted from feeling my true feelings (and also keeping me distracted by fear).

I also wanted to share all this to note that I have a multitude of symptoms, and some aren't really talked about on TMS forums I've seen so far (like multiple chemical sensitivities). I've also had some accidents (fall down stairs, for instance) that may have caused or exacerbated pain initially. However, I really feel that this is the true answer, so I'm going to keep reminding myself that I fit the criteria for TMS, so that I can get started on recovery. I'm so glad I found this site!

 

You do seem to totally fit the criteria of tms. I, too, share so many of the symptoms that you write about and the frustrations you share with the medical community. I am now on my fourth week of this program and starting to feel better. The journaling has brought up many things that I haven’t wanted to deal with and if feels great to get them out! Though the process is slow, it will work! Good luck to you on your road to self discovery and good health!

 

Thanks Diane1313 for reading all this and for commenting. I'm glad you are starting to have some success with the journaling! This is very encouraging to hear. I wish you the best in having a full recovery from symptoms soon!

 

The basics of your story sounds similar to mine and many others. A long history of pain mixed with major stress. Once we learn about TMS and look back, we often, like you did, can identify periods where symptoms emerged or intensified due to major life stressors. This is a huge first step, so great work so far.

It is amazing all of the weird things our brains can do symptom wise. Try not to worry too much if you don't see other people with your exact symptoms. We all have weird unique things that TMS treatment can help with. Regarding chemical sensitivities, I would lump that in with food sensitivities and allergies in general. You might see more people who have been helped in those areas (the treatment helped me get to the point where I can eat everything and anything again).

If you are looking for more supplemental material, I would suggest Dr. Howard Schubiner's work (Unlearn Your Pain). He deals with a lot more symptoms than Dr. Sarno did as his work is newer and a bit more expansive. That might help.

Good luck and be sure to reach out on the forum if you have questions, doubts, etc. during the program!

 

Thanks so much for your message, ssxl4000! I really appreciate your feedback. It's very reassuring to hear success stories, and I've actually found some more references to odd or differing symptoms as I've been researching more on the site. I'm so glad I found this site and for all that I'm learning. I was reading more about Dr. Schubiner on Day 4 and thought about buying his book, so I will definitely do that, now!