Day 1 My story

[healing26]

Hi there. I just found out about John Sarno about 2 weeks ago. I have been immersing myself in videos and books and all things Sarno ever since. I am about 95% convinced that I have TMS. I certainly have the personality traits and the types of disorders that come along with it. When I look back over my life, it seems I have always had TMS in one form or another. I have never had migraines, but I have had ocular migraines and tension headaches a good part of my life. I got my first ocular migraine in elementary school. I had knee and hip pain as a teenager, diagnosed as tendonitis and bursitis. I used to get this awful burning in my upper back muscles while doing homework and the doc called it trapezius myocitis (myocitis...interesting). This was over 20 years ago. I am 46 now. I always had a nervous stomach, dealt with seasonal allergies, in 1999 got Graves disease and had a thyroidectomy. I have been diagnosed with IBS although in the last year, the IBS has gotten better and now there is body pain. Actually I can trace the beginnings of chronic pain to 2012. It was all in my upper back, neck and head, however. Very tight SCM's, tight scalp, blurred vision from it, face pain. Then early last year that began to change and it moved to my lower back. Have had an MRI and of course have a bulging disc at L4/L5 and a torn disc at L5/S1. Pain in my left gluteals, sometimes down the left leg and, for reasons no one can answer, up my left side and across my upper abdomen. I could go on and on about how this has affected my life. At this point I have trouble walking more than a short distance without everything flaring up with pain and tingling on my left side from my ribs down to my foot sometimes. I can't forget to say that I have a history of anxiety with very bad panic attacks last year that led to hyperventilation many days. That's when a lot of this pain really ramped up. I also seem to have some IBS symptoms still with me as gas tends to build up when I walk and creates even more pain. Lately, I have been getting a burning feeling in my upper back, upper chest and down into my arms. Of course many in the medical profession have suggested fibromyalgia but I never wanted to accept that sentence, and I feel it is a sentence since there is "no cure". I have run the gamut of doctors, physical therapy, epidural injection, chiropractic, acupuncture, myofascial massage. This is truly my last hope. I want my life back.

 

[theroomstoocold]

Hi, I would love to talk more with you. I have only seen one person so far on here that has had a Thyroidectomy like me. Let me know if you are still active on here.

 

[healing26]

Hi, I would love to talk more with you. I have only seen one person so far on here that has had a Thyroidectomy like me. Let me know if you are still active on here.

Hi there! I am nit active but i just got a notification of your post! When was your thyroidectomy? Are you having issues?

 

[theroomstoocold]

Hi there! I am nit active but i just got a notification of your post! When was your thyroidectomy? Are you having issues?

I had mine March 8 2018. So Over a year now. Just totally crashed my entire world. I did not think it would be this bad after!
I have been previously on Synthroid (tried generic and then brand name for a year even) and now I am on Tirosint, a gel capsule of lexothyroxine.
I feel a little better on this new gel capsule since it aborbs differently, doesnt have gluten or any fillers. (much more expensive)
But, my levels are far as TSH, t4, t3 and reverse usually are normal. There was a time when my TSH was like 12.0. ( I was losing my mind too )

I just have not been able to find anyone else who has actually had a thyroidectomy that is also going through TMS. Im sure people exist, I just mean I havent connected or turned up a search. Most of the posts are just for hypothyroidism, and Im not saying that is nothing but taking the thyroid out is MUCH more impact and all that.

I just wanted to know how you are doing without a thyroid (If you had a total removal). I know people personally who have had theirs taken out and are totally fine, no real change. But for me, and Ive always had depression and anxiety, I went off the deep end and was suicidal, had to be committed (literally). I also just had two babies, one in 2016 and one in 2017, so I was told I had thyroid cancer while I was pregnant. (talk about stress ). They said nothing could be done until I had the baby. So had a csection, then 8 weeks later had my surgery. My surgeon did a great job. My thyroid was the size of a grapefruit and she said it was one of the largest she personally had removed. I did not realize at the time how this was going to actually impact my entire life.
My blood levels are checked every 3 months, and sometimes I even request more than that to see where I am. (Thats the anxiety coming in there)
They are usually always fine. But I dont feel fine. I am not fine. I feel crazy, like a switch was flipped and nothing is together for me anymore.
Reading more into how your thyroid controls every hormone function in your body and how vital that gland is, I realize what I have lost now.
Already having a background with depression and anxiety, it was tenfold increased and amplified. My TMS pain got really severe probably during my pregnancy with my first child. Im not sure still what caused such the bad onset of my TMS symptoms, but I have had back and leg pain since 2012 but it was never super severe like it is now. I have been ruled disabled but I continue to work and not accept that diagnosis.
My endocrinologist wants to just say you need a therapist, which is fine, and I do, but, thyroid symptoms mimic psychiatric symptoms. It can be compared to how TMS is overlooked or ignored. My moods and emotions are all off from this hormone imbalance and relying on this medication to replace a vital living gland that is now gone from my body. I am never going to get any help for this by a medical provider for that so therapy is something I do and continue to do for my "mental health issues". I feel my pain stems all from these issues. And sure, alot of it is probably repressed emotions and stress, but I truely also know some is from a real medical condition of not having my thyroid anymore. I just wanted to connect with someone else to see how their experience with their surgery has impacted their ability to get better with TMS. Hypothyroidism is terribly common, but it is not the same as having it removed so that is why I decided to really only try to reach out to someone who is in my boat.
I dont have alot of friends since having all my pain and having my two kids, and "growing up"... I just turned 29 on saturday. I guess im an adult now and having friends isnt a priority but I would like to connect with others in this format since in real life its not an option with how busy my life is.
and my diagnoses by spine doctors and my primary care were severe stenosis, L4 L5 herniation with nerve impingement, degenerative disc disease, and fibromalygia. Which Ive learned all fall into TMS.

I have not gotten relief, Ive read mind over back pain and healing back pain, and currently reading the divided mind by Sarno. I have got to journal, people on here and other places swear I have to journal which I need to start

Let me know anything you are comfortable with, and I am sorry this is so long. I am just deteremined to finally get relief and really truely accept that I can overcome my TMS.

 

[healing26]

I had mine March 8 2018. So Over a year now. Just totally crashed my entire world. I did not think it would be this bad after!


Hello again. I apologize for the delay getting back with you. Oh my goodness. It sounds like you are having some real struggles. I am so sorry to read that.

So I had my thyroid taken out (all but a very tiny piece) 20 years ago. I can't say that I had any issues after the removal. I do struggle with anxiety and depression and have most of my life. Health anxiety was, and still is, very high on the list. I did not have thyroid cancer, but I had a huge goiter and nodules all over it and it was to the point it was starting to make my eyes bug out. So I definitely needed it removed. And, as I said, I never really noticed it being that big of a deal after the removal. I have had very few dosage adjustments even in all these years, but a few years back, I did switch from Levo to actual Synthroid because my levels at the time were all over the place and the doc thought going to the brand name might help. It seems to have.

Now, let's get to what may be going on with you. You have been through A LOT in a short amount of time. How much do you know about TMS? And are you doing any "TMS work" at the moment? Stress can also have a MAJOR impact on your hormones. Just elevated cortisol alone can mess you up. And the thing about hormones is that once one is off, they all are off. What if.....your hormone issues and your physical issues are due to stress and anxiety and elevated cortisol and it has nothing to do with the thyroid? What if your focus on the thyroid is a distraction from the emotions that your brain doesn't want you focusing on? Are you open to that maybe being a possibility? I have been on the thyroid support groups on Facebook and I see a lot of people are struggling. But what if their real problem is just plain anxiety and that is what is making them feel so awful? Because, like I said, I have had anxiety for most of my life (I'm 49) and anxiety can make you feel awful.

I also had tons of MRI's and tests and blah blah blah. I have disc issues at L4, L5, S1, just like most of everyone walking around. I do not believe for one second that is the cause of any of the pain I experience. I have also been diagnosed with fibromyalgia, which is basically TMS on steroids. I 100% believe that it is tension and stress and emotions.

So....what is going on in your emotional world? You don't need to answer that here, but something to think about. As long as you focus on the physical world, it will be a distraction from the emotions. May I suggest, if you are on thyroid support group pages on FB or elsewhere, maybe take a break from them. Same with any other support groups...fibro, chronic pain, etc. They can get super toxic and do not aid in healing. They only have served to keep me afraid and stuck.

I hope some of this was helpful?