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Discussion in 'Support Subforum' started by Harzee, Dec 7, 2019.

  1. Harzee

    Harzee Peer Supporter

    For over a year I had every symptom and test under the sun. The people on this forum helped me a lot!

    My most bothersome symptoms were burning, tingling, crawling, prickling, numbness, hypersensitive nerve like pain (like I soaked in A535 rub). I also had extremely sore elbows (BOTH). It came and went and affected different areas of my body at different times. In fact, it changes minute by minute...

    I have seen Rhumetologists, Neurologists, Holistic medicine, Chiropractors, Accupunturists, GPs...I have had MRIs of brain and spinal cord, tilt tests, small fiber neuropathy test, EMGs, blood work like crazy, ultrasounds, xrays, you name it...all normal.

    After searching and obsessing about my symptoms, I just stopped altogether and decided to just live my life and eventually the symptoms all disappeared. They were gone for five months and I was sooooo happy.

    The past few weeks, they are back with a vengeance and I feel so defeated and discouraged.

    Have you seen people relapse? What causes this? What can I do to get better again? Is this evidence of stress illness? Will this always be my life?


    Thank you for listening to me.
  2. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Harzee,

    You are welcome!

    I am sorry the symptoms have returned. This is not uncommon.

    My short response is that if this worked:

    then this is the place to start. Stop worrying, and go about your life. You have a huge advantage now, compared to when this happened to you before. You have experience, confidence, practice.

    If you think it will help you to have more tests again, then this may be helpful to instill confidence.

    More of my ideas:

    ---it is more likely that your symptoms are 'stress illness' than neurological, because they were gone for five months. I am not a physician, but symptoms coming and going is supportive evidence for TMS.

    ---you already know how to do the "ignore symptoms" process. Perhaps what is needed is deeper work now. This is often the case with "relapse." The relapse is a call for you to go deeper into self-understanding. Not sure if you ever did journaling, did the SEP, or other programs. Highly recommended!

    ---you inquire into your life to see if something has happened lately to evoke more inner stress. This is helpful in "seeing behind the curtain" to connect your symptoms to TMS.

    ---don't pressure yourself to get better. In fact, work on reassuring yourself that you are safe right now, with whatever condition you are experiencing. This might be doing relaxing breath, practicing mindfulness, listening to Claire Weekes, etc.

    whitewatersmetta and plum like this.
  3. Harzee

    Harzee Peer Supporter

    I really appreciate your response @Andy Bayliss

    It is the anniversary of my Mom's death next weekend and it was the Anniversary of my beloved dog's death last week. They were both my best friends. I am wondering if this is causing my relapse.
    whitewatersmetta likes this.
  4. Dorado

    Dorado Beloved Grand Eagle

    Relapses happen - I've written about having flare ups and experiencing new symptoms after going through a difficult year with family deaths and illnesses, new responsibilities, romantic failures, etc. My hands and feet were sweating, I felt electric shocks in my legs, my hands were sensitive, I tested positive for H. pylori after having major stomach pains (which most people are able to live with without intervention - until they start developing powerful emotions and feelings such as stress that make them vulnerable to the bacteria), and the list goes on. But that doesn't mean I'm permanently doomed! I'm still alive, I need to keep going on no matter what happens to me, and I can't spend my life thinking I'm doomed. I ALWAYS recover, and so can you.

    You have to accept that you do not have a neurological disease, and that symptoms caused by the mind-body connection (TMS) can happen to anyone at any time, but you can overcome them. You've already answered this yourself:
    Sometimes we already have all the answers we need, even if we can't see it due to our own fears. I've spoken with you in the past about avoiding reassurance seeking, and I don't want you to get stuck in that pattern. I think you possess far more wisdom than you give yourself credit for. If anything, this is an excellent opportunity for you to start finding that reassurance within yourself. As I always say, there is always a way and always a solution in life.

    That happiness you felt for five months is not out of reach! Remember: Nothing is hopeless.
    Last edited: Dec 8, 2019
    whitewatersmetta, plum and tgirl like this.
  5. Harzee

    Harzee Peer Supporter

    I always appreciate your feedback and support. I am sorry you have had relapses too...

    I am trying hard not to go down the reassurance path again. My question is, they say to get tested before you assume your symptoms are TMS...It was over a year now since my last neurological tests and I read that neurological illness symptoms can come and go. Do I just treat this like TMS or do I go for more tests...

    PS. I went to the gym tonight and had no symptoms...no pain in elbows...

    Hope you are well.
  6. Dorado

    Dorado Beloved Grand Eagle

    No need to apologize or feel sympathy for me! Remember that every single individual on this planet experiences mind-body symptoms - whether it’s a headache when you’re upset, waking up in the middle of the night when you’re anxious, blushing when you’re nervous, etc. This means that every single person who has posted a success story on this site will experience some type of mind-body symptom again, whether it’s super minor or more intense. Nobody posts a success story and is then 100% perfect forever, because the mind-body connection is part of being alive! Your entire body is always responding to your daily emotions, even if you don’t realize it.

    Any symptoms I’ve experienced since I posted my success story don’t last very long and are way less intense than before because I’m not afraid of them. I just shrug them off. Instead of dealing with many months of severe symptoms, it may only be a few minutes or a couple of hours of far less intense symptoms. I simply don’t pay attention to them anymore. And never do I think I have a terrible neurological disease.

    Now, I do have dysautonomia from Ehlers-Danlos and that can make me more susceptible to stress-related symptoms because my autonomic nervous system is a bit different, but I’m far from doomed and it’s totally livable! It’s only bad when I’m super stressed out. This is why I always tell individuals with Ehlers-Danlos to relax and soothe their autonomic nervous systems - even a structural disease like mine is intensified by the mind-body connection. Sometimes I look at Ehlers-Danlos forums (although I’m not a member of any) and I can just tell that the mind-body connection AKA TMS is behind a number of their issues.

    I’m telling you this so you can see what I deal with and how I remind myself that none of the symptoms are permanent! We have MUCH more control than we often realize.

    Here is some wisdom from Dr. Howard Schubiner, written to a person who experienced a relapse with gastritis. Note that overcoming your fear is key:
    Last edited: Dec 10, 2019
  7. Harzee

    Harzee Peer Supporter

    Thank you again for your wisdom. I am just wondering if I should get more tests, or just treat this like I did last time and move on with my life. You are right...I am full of fear.
  8. Dorado

    Dorado Beloved Grand Eagle

    You passed the tests for these same exact symptoms already and were given a clean bill of health. What’s been going on in your life to prompt the same set of symptoms again? You don’t have to answer that for me - it’s a question I always ask myself when I’m stressed out.

    This is why it helps to relax and work on fear and stress management. You’ll experience far fewer symptoms of this nature over time.
  9. Harzee

    Harzee Peer Supporter

    @Dorado I guess I just thought that I should get more tests, as I read (long ago when my Health Anxiety started and I was Googling my symptoms like crazy) that Neurological symptoms come and go and it can take up to 10 years to be diagnosed.

    I am just so disappointed and discouraged that the symptoms are back with a vengeance.
  10. Dorado

    Dorado Beloved Grand Eagle

    I know how that feels. Truly, you are not alone. It’s important to work toward getting away from that type of thinking. I used to read all sorts of things that my doctors insisted had nothing to do with me, even the team that consisted of a neurologist, an internist, a geneticist, etc. at the hospital ranked #1 in the world. I wasted so much precious time worrying despite the very best experts telling me to relax. After visiting that hospital and still having doubts, my mom would ask me when enough was enough. How many doctors could I see, how many tests would finally convince me?

    I started realizing that my symptoms were indeed caused by daily emotions as well as fearing and obsessing over the symptoms. I could feel my sympathetic nervous system responding to stressors. It literally hit me while on my way to the office one morning. You have a similar history, and your symptoms went away when you weren’t fearful or obsessing. I would continue working on that. Searching for something that isn’t there - as demonstrated by all the right tests - is not going to help you. It’s not good for you (or healthcare resources in general) for you to continue to repeat those tests for the next decade.

    Keep in mind that some people take longer to get diagnosed because they haven’t gotten all the testing you’ve had. It can take years for people to navigate the healthcare world. To me, it sounds like fear is still getting in the way of you being able to let go. But your five months of happiness is evidence that you can do it!
    Last edited: Dec 11, 2019
  11. Drew

    Drew Peer Supporter

    Are they completely gone now? I have the same symptoms neurological ones that tetunred with a vengeance.

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