Really need some encouragement~ persistent TMS

Hello Everyone~
I am writing to you today because I feel a little bit at my ‘wits end’ with some very persistent TMS discomforts and symptoms… and I need a little helpful boost of advice and encouragement~

I have had very successful recovery from classic TMS problems like lower back pain, plantar fasciitis, gastro intestinal distress (IBS) painful frozen shoulder, and a host of various issues; almost all of them completely resolved through typical TMS healing procedures.

however, about four months ago I started with numbness and tingling in my arms, hands, legs and feet at night- when I would be lying down. It would wake me up many many times at night with all different kinds of panic… Classic!
I got a number of blood tests done at the doctor, an EKG, and everything seemed fine.
The numbness and tingling, which was first only at night eventually started up at various points during the day. Sometimes it would manifest as extreme muscle weakness in my arms with a muscle pulsating feeling or what feels like electric shocks.
I have completely understood this to be TMS and have started morning journaling, relaxing meditations, even seeing a psychotherapist; but still the numbness and tingling persists- some days better than others.
I think through all the work I have been doing, I have had a reduction of panic around the symptoms and therefore a somewhat reduction in the daily annoyance of the symptoms.
but what has really dogged me is they really just haven’t gone away and it’s been many months~ I totally understand you cannot put a timeline on healing, but I’ve healed so successfully from all these other TMS issues but this one is really a puzzle to me and doesn’t seem to be getting all that much better.
as a result, I keep wondering if this is chronic Lyme disease, or some kind of hypothyroidism, both of which are classic TMS equivalents, I believe.

ugh~ I don’t know what I’m really asking here, but after last night waking up so many times with numb dull painful forearms and hands, I just feel like I’m really at a frustration point. even sitting here writing this my leg feels like it’s starting to somewhat fall asleep, but I know the minute I get up and start doing some thing and I’ll be totally fine.

I love and appreciate everyone on this forum and I hope to get some great encouragement! Thank you

 

I can relate and sympathize with what you're going through.

It sounds like you've exhausted your quiver of TMS arrows though and it has to be frustrating not getting any relief.

One thing you didn't mention was somatic tracking, I find this helps me with certain symptoms and sometimes the relief if immediate!

https://www.bch.org/documents/content/Somatic-Tracking-Exercise.pdf

It also helps to find ways to diminish what is happening - thought exercises like "oh, you're doing that again? puhleeze" or just simply "hmmm, that's interesting - what was I thinking (or dreaming in your case since it happens often at night) about right before this came on?" You have to come up with something that works for you but the point being you are recognizing this symptom as a harmless thing and not dangerous.

 

oh yes~ I forgot to mention somatic tracking… I do engage in that often (when i can remember to do so) and it does help a great deal~ I highly recommend somatic tracking.

I also have tried some herbal tintures like St. John’s wort, and although I do think it’s helped alleviate some anxiety and panic, it does not seem to have helped any physical symptoms directly.

 

Two other things that help me that you might try:

- Pros/cons lists (for why it's structural vs TMS)
- Listening to TMS podcasts (I like Edy Lindenstein's Mind & Fitness but Nicole Sachs is also good)

 

I totally understand @fridaynotes
I am going through another rough round with my symptoms (mine sort of circle around).
What I read in your first post is fear. And I completely understand because fear so big in my life too.
Has that been a predominant emotion in all of your tms struggles? Is it a predominant emotion in life? Has it been your operating system, even when you didn’t realize it?

I love @Mr Hip Guy ’s suggestion of an evidence sheet. I have one going, but I still doubt symptoms are 100% TMS. It can be a struggle!

I think fear and doubt, and looking at what things in your current life make those loom large my give insight. I found myself missing some obvious questions of myself: why do I need symptoms? Do I fear getting better? Why can’t I relax?

I also see some anxiety with timeline. Again, I get this. It is hard to let that go, but self compassion may help.

Sarno used to say to his clients who’d have more symptoms, that it’s TMS and their “work” was not yet finished. You have had so many amazing successes! It’s remarkable! You are so dedicated to your wellness. Perhaps there is just more healing in store for you, and the opportunity to embrace your incredible self even more.

Most people in this world are afraid to take this deep dive into self, but this is where you are being fearless.

 

ugh. yes~ fear. i am afraid. afraid that it will never go away! even though i know deep down that it will... and this morning i was feeling rotten, my arms were weak, my hands felt tingly, my forearms ached, i just felt crappy... but the minute i got to school to teach art and had to 'perform' and be 'on' somehow all my symptoms disappeared and i was totally 100% fine! Yet another proof positive that these symptoms are TMS. Once I get home, get quiet, etc... all the symptoms flare up- especially when I try to sleep.

My work is definitely not done; i see it as a spiritual journey, a struggle towards the light. I just felt like I had been making a lot of progress and yet feel lost and mired in distress that the most troubling of my symptoms persists... that was why i posted.

I really appreciate all this encouragement! Thank you~

 

That needs to go in your Evidence Sheet! (I like that name better - thanks @Cactusflower )

If you're at all like me, some of the stuff on my sheet is pretty darn self-evident and I think "I shouldn't list that, it's obvious!" but I tend to forget - so it's helpful to read it and re-read it. When you make discoveries/revelations - put them on the list!

 

YEAH~ I need to make that evidence list and keep it by my bedside so when i wake up in the middle of the night I can look at it. Often, of course, I get in the most panic about TMS in the middle of the night~ the 'dark night of the soul' LOL

 

It's not the worst idea in the world...

Night time is bad, for me it's upon waking up - if I have a TMS symptom, it's going to feel worse upon waking. It's like my mind has this interpretation of sleep as being a period in which we seize up and rust. Actually in typing that out just now I had a bit of an epiphany - probably has something to do with aging and getting decrepit, etc.

 

Middle of the night, If I’m struggling I grab my headphones and phone and do a really calm meditation. It could be self-compassion or a new favorite I found on letting go specific timelines of healing (its meant for pelvic pain but is a good general mediation).

 

Hey man I want to chime in and say I have very similar symptoms. They are persisting but I’m fairly sure it’s TMS since I’m a TMS type and have had many bouts before.

Bro check this out - I had a super stressful day this week at work and had to deal with a person who is 100% a trigger for me. I had to give this person a 15 minute car ride. When I was done my entire right hand/arm was numb as if I had slept on it wrong. I had to shake it a bunch to restore some feeling of normalcy.

Clearly someone I need out of my life lol. It’s miserable dealing with some of these pricks. Ahhh… “pricks” like the feeling I had in my arm. Imma go call Dr. Freud now. Have a nice day all.

 

I have had similar numbness/tingling symptoms start up fairly recently. These are new (to me) symptoms.

I have had a bunch of neurological-type symptoms that began after I was vaccinated last year, and I think my brain is just reveling in them. “Something new to worry about!” it says gleefully.

Remembering that my brain is generating the symptoms for its own weird recreational purposes, and reminding myself that none of it is to be feared is helpful.

 

I'm right there with you. At the beginning of the pandemic, I began to develop numbness in my hands when I slept. It slowly moved to my feet. Then turned into odd sensations of wet skin and crawling skin. MRI, CT were negative and all my blood tests were fine. It took me almost 6 months of journaling and therapy to finally get to a point that it's not intruding on my life, but it never completely stays away.

I've discovered that I am absolutely terrified of dying or someone close to me dying. Covid has presented me with facing that fear on daily basis. Simple decisions like sending the kids to school, attending a Super Bowl party or visiting my Dad are emotional fear bombs. Bombs that I can't seem to defuse. For a while I controlled my symptoms by closing down my life to avoid exposure. That's just not an option anymore so I'm dealing with the numbness again along with some wicked acid reflux.
I try to focus on past success. So for me, I've learned to tell myself that it's temporary. This too shall pass. I know the source. The symptoms don't scare me anymore, but when i get to my "wits end" because they're extreme, I come back here to read. I rage on a page about it in my journal and I get back on the Curable app.

 

What your describing is almost identical to my experience as well. I have come to understand this juncture of the TMS journey as a point where knowledge/identification isn't the cure anymore. I have noticed then when I think emotionally/reflexively about the symptom experience I often get a shift or reduction. This is usually achieved through gratitude, understanding that this is my brain signaling something that I can learn from. Reduce stress, resolve inner conflict, express repressed emotions etc. Like you most of these symptoms happen to me at resting points in the day. Boredom is something we tms'ers should probably talk more seriously about. It is a seemingly benign but actually pretty dangerous state of mind that I believe often correlates to symptom intensification. You stated that your symptoms resolve or lesson when you have to perform at work.

Thank you for sharing and asking for help. It has already helped me in return and I hope some of my words can return the favor.

 

You are so right about boredom being a dangerous state of mind! In my life, it’s had a big correlation with symptom flares.
Thank you for pointing this out.

 

This should be your mantra, every day and minute of your waking time. You know that what you have is TMS, the proof is in front of you, you need to continue pounding it into your brain, but also do more of the things that give you joy and distract you from pain!

Lastly, four months is not that long of a time to get rid of neuropathy. It took me much longer. Be patient!

 

If you can get yourself a copy of one of Abraham Lowe's books, you will find descriptions in there of people with similar issues, particularly the 'electric shocks'. These books are "Manage your Fears, Manage your Anger" and "Mental Health through Will Training". Although they were written I think in the 1950s, the patients described have problems that are basically TMS. Lowe is very in line with Sarno, and for me, it made the final difference for me to read these books and try it out. Although intended for a wide range of mental health problems, the strategies work well for chronic worriers with TMS.

I found it weirdly comforting that people in the 1940s and 50s had all these same things too, it is pretty average it seems, nothing new, nothing exciting. The less impressed you are with the symptoms the quicker they go, be annoyed and fed up, but just carry on. Like that mom you see in the grocery store with the screaming kid in the shopping cart. Just carry on! Much like the baby, these symptoms are distressing, but not dangerous. It is the danger thought that leads to anxiety which leads to more symptoms. Round and round it goes.

 

how is your neuropathy now ?? i also got mine straight after my booster - which i regret as this has been an awful journey of terrible small fibre issues and symptoms - are you healing ?

 

how are you going now ? is the neuorpathy going ? i also have the same post vaccination

 

to be honest, I’m going through a very rough patch. I also regret taking the shots due to a prior vaccine injury but was persuaded to get them by practically everyone in my life to do it and I caved in. Now if I have any kind of flare, the neuro stuff also runs amok.

I had a couple of falls on the ice in this winter and actually hurt myself both times. Now its turned into TMS so I’m doing my best to find my equilibrium. I keep telling myself that I know what I need to do. It’s just my brain is running in fight or flight 24/7. I even went to a hypnotist! Explained a little about TMS to her, had a session and she made me a recording I was supposed to listen to for 21 days. It didn’t help, maybe because the message on the recording was pretty generic and didn’t address what I know is the problem. Maybe I should make my own recording!

How are you doing?