What am I missing?

Hello fellow TMSers, I've been lurking on this site for quite a while, now its my turn to ask for help, cause I feel like there is missing link somewhere in what I'm doing.

I'll try to make this short. Almost two years ago I started to have some random flu like aches in arms and legs, didn't think of it much then. Then developed dizziness and intermittent ringing in the ears. I went to GP, got loads of blood tests, vitamin D and iron were off so I was told to take them. In those next months my situation worsened dramatically, the pain was extremely severe, specially crushing pain in hips and burning thighs, I didn't even know there was a pain like that. It usually came at evenings, just when I lied down to go to sleep. Pain killers didn't touch it (even though they worked perfectly for a simple headache), I also developed fatigue and regularly got dizzy spells and nausea. I was hoping, praying and staying positive for about a year.

Finally one rheumatologist found some antibodies and decided that it means I have reactive arthritis and prescribed loads of drugs, antibiotics and stereoids. I was kinda happy then, that something was finally found. But then in two weeks I just..deteriorated for a lack of a better word. My pain increased, and kinda changed its quality, I was extremely fatigued, couldn't get out of bed, was extremely weak. I couldn't walk for more than 15 minutes because my ankles would start burning. That was very scary and I had to leave my studies and job in a matter of couple weeks and moved back to my home country to my parents (at 27 years old, after living independently for many years, that itself was extremely stressful, independence and success is a thing for me, I realize it). This was in September 2016.

I went to dozens of doctors, loads of tests, everything was fine. January 2017 I found out about Sarno. I am the perfect candidate for TMS. I know I have it. It checks out, the goodist personality, the work ethic, extreme responsibility, and feeling like I need to save everybody, maintaining cool persona, always making jokes and entertaining others, used to have eating disorder, very demanding of myself, couple things in childhood, the whole shebang + clean blood tests, adequate muscle strength and MRI's with normal abnormalities.

First when I read about TMS the pain subsided for a couple days and it was great, because it was proof that I have TMS. Since then I've read couple of TMS books, read success stories, read scientific research on this (I am normally annoyed by scammy miracle cures, so it was important to me to know that this is legit. And it is! It checks out physiologically and neurologically. Somatization is a fact. So, I convinced myself about, wrote a list of evidence etc. Started meditating, journaling, processing my emotions, thinking psychologically when having symptoms and it kinda worked, and it was great. I felt like I have cracked it. Had a good week, but then it came back, then a two week dizzy spell, then two good weeks, already mentally packing bags to move back and enroll this September, then developed a rash from water, fixed it when realized it was TMS, then developed rash from like any pants, how ridiculous is that, then the pain came back, then a week of fatigue and its just this insane cycle. And constant ringing in the ear, that enough can be a handful. I can have a different symptom for every hour of a day. It would be very funny if it weren't so awful.

Its now May, and while I fully realize that I am better, that my original pain has lessened in its frequency and intensity, I still have all these other frankly debilitating symptoms. The whole thing is stressful, I never thought that this would happen to me, I still kinda cant believe its happening, that I actually am living home with my mom, jobless, when I had this whole life and things. And I can drop the goals (insane stressful goals by the way PhD and private practice etc), I just want to feel good, just go for a walk without burning feet. Oh, and the randomness of symptoms is impressive, I could go skiing one day and then the other day I cant walk much. I mean, come on.

I am getting quite bitter, that this has happened to me, I dont deserve it etc. And I still know its TMS, I really do, but how come it wont go away? I could write a book about how my symptoms are TMS, I kinda have in my notebook. What am I missing?


This turned out to be very long..

 

Wow, this is far too long, thank you to everybody who read it! Feels good to have posted it actually, but rereading just confirms how much of a mess I am.. I now realize that I haven't admitted that to myself, I keep trying to be sure and confident about the whole thing, but that might be just a Jung persona mask thing.

 

Believe me, I understand what you're going through. My pain has actually been going on for 20+ years and it still not gone, after five years of doing this work. But I've come to the conclusion, and maybe you're the same way, the nervous system is hypersensitive and along with the emotional turmoil's and such, it is dysfunctional in the autonomic and parasympathetic nervous system. Basically, your brain has become hyper sensitive to pain. There's another word for it called central sensitization, and it can get quite frustrating. Even though I know I have TMS, I do believe that my nervous system has become sensitized from conditioning. (think Pavlov's dog)

You do need to retrain the brain to recognize the pain does not need to be a danger signal. The reason why we have pain is not from a structural problem, most likely it's because of the brain's continual protection from signals it receives, especially if there has been past trauma. It can get in a cycle, where everything is perceived to be dangerous, so the brain elicits a pain response when there shouldn't be any. Many times, it could be from emotional issues or can arise from stress or other things that are triggers for the nervous system to fire off it's danger signals.

Most important thing to do is to not give in to the pain, but also don't go gangbusters on challenging it either, if you do have central sensitization. I did this, and it made things worse because my nervous system was already so hypersensitive, it send out more danger signals. I just go slow and continue being active and letting my brain know it doesn't need to send out the danger signals. Read up on central sensitization and you will see some things that will help, if TMS therapy alone isn't working.

Many times, if the pain moves from place to place, especially if there are prior injuries in those areas, the nervous system may still believe there is danger or trauma occurring - that is the dysfunctional autonomic nervous system, which triggers all pain signals so you will focus on that area because it thinks it's in danger. If you talk to it, (the brain) letting it know that you are OK and there is no reason for the alarm and not fear the pain when it comes up, it will be retrain the brain to realize there is no danger and it will calm the pain down.

 

Hi Jules, thank you for your reply. I have definitely come to a conclusion just like you that it is an overactive sympathetic nervous system and that my fight and flight are stuck in constant danger, danger! freakout and therefore find in necessary to keep me in a tense, allodynia like state. But, I considered it to still be chronic stress induced and psychogenic in nature and therefore treatable and eventually curable with TMS approach, meditation, therapy etc. I've read couple TMS physicians, namely Dr Schubiner, who explain TMS in basically the exact same terms that regular physicians explain central sensitization. So, can I ask why you are dividing central sensitization and TMS as if they are not essentially the same?

 

Central sensitization is TMS. It's just that TMS goes farther and explains why it happens, where traditional medicine doesn't. Central sensitization happens due to repressed emotions, when you put those concepts together it's TMS.

 

I also think central sensitization can occur because of past accumulated trauma and the triggers it sends to the body. I agree it's treated the same way, but in my case, and many other people, ptsd created my c.s. and the resulting emotional upheaval.

 

Because TMS is the result of repressed emotions, but if those emotions are tied to ptsd, especially caused by more than one traumatic event, such as is my case, the nervous system can stay on high alert. It's the stress response that becomes conditioned to send warning signals when they're doesn't need any warning. It becomes a viscous cycle, until the brain becomes desensitized and it returns to a normal stress response.

 

I came to the conclusion I have a form of CS since I developed nerve pain in 2013 and got a remission using amitriptyline and lyrica combined. I was able to get off them and live pain free for another year and 4 months. This excludes nerve damage since that pain would recur as soon as one stops the drugs.
@ Elina I also get the crushing fatigue. What worked for it was mindfulness. In fact I was shocked that mindfulness made some neuro symptoms dissapear (I had a random buzzing nerve in my right foot). I would like to add that I am indeed back on Amitriptyline, however!! it worked really fast for me and this drug takes months to show effects and doesn't cover my pain with touch...Mindfulness has been a blessing, I wish I'd done it sooner.
For central sensitization symptoms I did the following: Quit coffee, quit putting insane pressure on myself to achieve, kept my anxiety in check, did mindfulness every day for 10 minutes, progressive muscle relaxation before bedtime, avoid upsetting media news, started drinking valerian tea and chamomile tea, took magnesium and read articles on somatization so I get it in my mind this is stress induced. Watch Gabor Mate on TED talking about how stress causes disease, it adds to the Sarno knowledge

 

we are oversensitive, and we overthink... we will not leave it alone, we are like a dog with a bone, can;'t we just chill out? !
it is possible - but involves thinking our life and goals thru and deciding what we really, really want (not think we want...!) it is scary and difficult but possible...:mask:
we are so like onions it can make you cry...

 

Pain is part of life. Suffering is optional. Generally when we suffer it feels meaningless...

Re: TMS is there to distract you. It thinks it is preventing you from feeling pain.

What was happening in your life two years ago that necessitated a symptom?

We cannot know you no matter how much you type because we don't live,eat,sleep,feel you the way your family,friends,co-workers do. I guarantee you this. If you have someone close to you who knows the TRUTH about you, they could probably answer your questions in minutes, that you have agonized over for hours,days,months,years. It is like a pimple on our face that is obvious to everyone but ourselves.

Every time I have dealt with TMS it is always an excursion into very embarrassing/personal/shameful stuff. When I get to the root, and force myself to look at the truth no matter how uncomfortable, the symptoms subside.

I don't necessarily have to change anything, though sometimes I do because it is indicated and obvious... that's a personal choice. Pure awareness usually suffices.

Did you start a new job? Lose a BF/GF? lose a job? Parents begin to rely on you?
Anyone begin to rely on you...become needy?

This is just MY experience, but here's a list of stuff that has triggered 'crud' for me in the past:

Having to be 'moral'.. Being rejected or abandoned in any way, shape, form... Having to be nice and polite to someone who has seriously been a weenie...pretending I approve of or agree with people when I really don't. Starting jobs with a lot of oversight.... working multiple jobs at once... having to do projects unprepared , over my head.

Every time I meet with someone having TMS in person and I find out about that person, their likes/dislikes, propensities and so forth I can usually sight the prime source in Minutes... They are in a horrible marriage. They are in a stifling job. They have unreasonable demands on them from someone they can't say NO to. Children, bossy siblings, sick parent. Oftentimes I see them suffer because they absolutely cannot look at the painful situation... Usually because if they did, they would have to admit their wife is cheating on them, they didn't really earn their job, their living system is unsustainable, or they oftentimes stick their nose in things that have nothing to do with them (politics)

During our last election cycle that hasn't seemed to end, I have seen numerous SJW types and Uber-conservatives have TMS attacks and stuff that they themselves created by sticking their nose into something that they absolutely have no power over, yet insist on involving themselves in ... my brother has Trump derangement syndrome... and is having GNARLY back problems. All that anger and venom he spews on Facebook and such keeps him distracted from the fact that he A. Has been 86'd from his former profession B. Lives back in our mom's house when he was once mister swinging/wealthy producer C. Has no partner/mate and he is getting old (mortality) D. Is completely alienated from every friend and family member because of the black cloud AB and C have created

Look at your own experience with the symptoms and it will guide you back to why they are there...thinking that they are protecting you.

 

It can be so discouraging and depressing. Just when you think you are making progress -- okay, just when I think I am making progress, things seem to be worse. The biggest boost for me has been finding this forum and knowing there are others who have suffered/are suffering with the same problems. It's very hard when no one knows about TMS or understands how painful you feel. I severed ties with a 'friend' who said, "you are obsessed with your health", and "I've never known anyone who went to as many appointments trying to feel better as you do". The break didn't come instantly but that was the handwriting on the wall.

 

Because TMS is the result of repressed emotions, but if those emotions are tied to ptsd, especially caused by more than one traumatic event, such as is my case, the nervous system can stay on high alert. It's the stress response that becomes conditioned to send warning signals when they're doesn't need any warning. It becomes a viscous cycle, until the brain becomes desensitized and it returns to a normal stress response.

Jules, this is my case, too. So glad you wrote this because it clarified it for me. I'm always on alert, waiting for the next shoe to drop...this is from all the trauma in my childhood and I'm grateful to say that I'm able to feel the emotions now and it's gradually getting better. My symptoms have always been very scary to me, but now less so. When I feel one, I say out loud: "Stop trying to scare me!" It seems to work well!

 

Thank you guys for the very insightful answers! Very helpful

 

@sarah555uk
what exactly did u do for mindfulness?