New member in need of guidance

After prowling the site for months now, I've finally decided to dive right on in and seek the guidance of those who have been at this for a while. I'm a 33 year old wife and mother of three under the age of 6 (so right off the bat you know I'm a little crazy ). I've had recurring neck and/or back pain for going on two years now. I am not new to the teachings of Sarno, and I've read several other great books related to TMS as well. Additionally, I would classify myself as having several of the TMS-prone personality traits. I have analyzed my pain from about every angle, and TMS is what I find most fitting. I truly believe that my pain (primarily located in my lower back and radiating to my hips) is TMS.

With that said, however, like most of you, I have visited numerous doctors and been subjected to enormous amounts of testing. I've had the MRIs (cervical, thoracic, lumbar, and pelvic), and all have come back essentially normal except for the occasional "protrusion" here and there. No one has ever claimed that to be the source of my pain. My hang up is the rheumatological testing that has been performed. I will try to summarize the last 20 years of testing the best I can. I was originally told I had Sjogren's syndrome due to positive antibodies. However, I have never presented with any of the classic symptoms, and the top notch doctors I have see now all agree Sjogren's isn't my issue. Then I was told I had dysautonomia. Yup, my autonomic system is all out of whack…sounds a whole heck of a lot like TMS. This began right after the birth of my first child, and it was the first thing to make sense. Funnily (is that even a word?) enough, as soon as the doctor told me what I had, I got better. I have been better for awhile until the last couple of years with the neck and back pain. One of my Rheumatologists thinks I possibly have ankylosing spondylitis, and the other one (whom I tend to have more faith in) feels that I do not. I do have a family history of the disease (as well as MS), and I have tested positive for the AS gene (which is not diagnostic for AS, however). The MRI of my SI joint was clear. Thus, I'm leaning towards no AS.

My pain has jumped around for the last two years which is another reason I can't get on board the AS diagnosis train. I truly feel that TMS is my issue, as I have successfully treated myself in the past by simply reading Sarno's work. This time, however, the pain seems to be lingering, and my thoughts are running wild. I guess my question to you all is this: how can I push aside all the "maybe" diagnoses I've been saddled with for the last 20 years and fully accept my TMS diagnosis? My biggest hang up is the "maybe something was missed, and it really is autoimmune related" fear. Fear definitely dominates my life. I need help getting out of this hole, for I know it is my last hurdle in true acceptance of this diagnosis. Any thoughts, questions, or guidance would be wonderful!

Sorry for being so long winded!

 

Bhamgirl, I can completely relate to the fear of having missed something. The question is, if it is some kind of autoimmune disorder, what would you do differently? Is there some kind of treatment that you would be ignoring by embracing the TMS diagnosis? I have a long story, but if I were to narrow it down to the chronic pain I have had this last year, my biggest struggle was ignoring the results of my cervical MRI which revealed multiple ruptured discs. My physical therapist and long time friend thought I should consider surgery and she is generally very conservative in these matters. I had lots of numbness in my hands and with each doctor I saw my symptoms seemed to get worse. I really did not want surgery though and so I asked myself if it would be okay to postpone any decisions for at least six months and really pursue the TMS angle. That was seven months ago and now I don't even think about the MRI and surgery is off the table completely. Although I am not a complete success story yet, I no longer have numbness in my hands and my head, neck and shoulder pain is not constant anymore. I am improved enough in that area that I truly do believe my chronic pain symptoms and anxiety are TMS. It has been quite a journey and lately I have been thinking of my healing process in terms of ways to calm and release the tension in my nervous system. I have such respect for the complex interplay between our mind, emotions and physical health. When I am fatigued, experiencing pain, anxiety or just generally feel strange and unwell, I fixate on the possible causes. That then feeds the worry and the cycle continues. The most encouraging and direct help I have experienced is in working with a somatic experiencing therapist. The work at first is so simple that it frustrated me. For instance, if I said I wasn't feeling well or had a particular pain, she would direct me to describing how I actually knew that, where I felt it, and sensing into it. And also how to put my focus and attention to parts of my body that didn't have pain. Recently though, as I have been getting better at it, things would shift all around during my sessions with her. It has become so clear that these physical sensations are not lodged in some structural abnormality or disease. One day I really wanted to cancel my appointment I was feeling so sick and then I felt completely fine for several hours after our session. i am not proposing that somatic experiencing is the cure for everyone, there are so many different methods people use to heal their TMS symptoms. I just think that if you can really commit to the TMS diagnosis, even if it is with the procrastinating technique that I used("I'll give it six months") you may find that you learn and experience things that change the doubt and alleviate the fear you have now. I still have fear and anxiety, but I have so much less than I did 3 months ago. And sometimes a little less is all we need to make it manageable.

 

Anne, thank you so much for your response. Right from the beginning you posed a question I often ask myself, "what would you do differently?" The only significant difference is from a medication standpoint. Early intervention is key for most autoimmune issues, and I'm hyperaware of this fact. This awareness is what haunts me when I try to completely give myself over to the TMS diagnosis. It seems that every time I seem to be making progress from a TMS standpoint, something pops up that I fixate on and analyze to death. I know that's the name of the game with TMS, that it's always looking to distract you, and it's very good at it what it does. I simply wish I could turn my head off for a little bit! I'm so invested in my physical well-being that it consumes my life. At the end of the day, I wish I was provided with a definitive answer regarding the autoimmune issue (sadly, however, it seems nothing is definitive in that realm), and then I feel there would be nothing standing in my way to completely accept the TMS diagnosis.

With all of that said, I like the idea of giving myself a set amount of time to really commit to the TMS diagnosis. I think I'm going to give that a go, and see where it takes me. Thanks again for your response. It helped a great deal!

 

If you have been examined from A-Z and your pain skips around then that does indeed suggest TMS very strongly. Given all the testing you have undergone with no firm results it would seem that you have nothing to lose by treating this as TMS, especially if you have already accepted the mindbody concept.
It sounds like your family situation is probably pretty demanding and that may be your first clue. Perhaps there is not much time in your life for you and what you
like and want. It could be a good place to start some journalling and see what happens.
Good luck!

 

Solange: you hit the nail on the head regarding my family situation. The stressors that have been in my life for the last three years are overwhelming, and I have been journaling like madman. Sure hope to unleash a lot of the built-up frustration, etc. I have amassed over my life!!

Thanks for your input. I know everything you said is true and I think it myself, but sometimes it really helps to have someone else put it in writing for you. Thanks ever so much!

 

I'm not sure what medications you are referring to, but you could potentially take medications while pursuing the TMS work, right?

 

I absolutely could start the medications while also pursuing the TMS angle. However, the medications the doctors have wanted to try, namely Humira, are not only very powerful drugs, but also cost well over $1200 a month. I am highly sensitive to medications as well, and I avoid them if possible. Additionally, and I may be wrong here, but wouldn't taking these meds be going against the Sarno idea of doing nothing to combat the TMS…along the same lines as throwing out the lumbar pillows, doing back stretches, etc? If I chose to take the medications it would inevitably keep a strong focus on the physical, and not the psychological. Thoughts?

 

Dear Bhamgirl, Dr Sarno himself has prescribed painkillers for those suffering an acute attack of TMS. If it helps you to function and put in place the TMS combatting strategies you will need, then some relief from pain can only be good as long as you bear firmly in mind the cause of the pain. Let your brain know you know what it's up to even as you take the painkillers. Hope that helps.