Tremors (TMS personality + previous history)

Hello all,


I remember finding this forum more than 3 years ago when I was diagnosed with IC/Bladder pain, disease that has no known cause or definitive test to confirm but painful and debilitating. I was desperate after trying all medical roots and then came across TMS, did the work and RECOVERED. It took a lot of work and journey was not linear. I have been symptom free for almost a year. Then these came back 3 months ago.. I applied TMS and tried to ignore, they were up and down, then when on holiday and by the end of the first day they were gone and did not return.

Prior to onset I was going through a lot of stress (my family is from Ukraine so now live with me in UK for the last year and also we had to welcome my husband’s elderly parents so from family of 3 to now 8!!). I am beyond stressed (I tick every TMS personality box).

Anyway, as bladder symptoms disappeared two weeks down the line, I have developed tremor in my hand (more left), internal tremor (leg and jaw). Though it was Parkinson (always catastrophise and went through multiple cancer self-diagnosis and tests in the last 10 years, one every year).

Went to see GP and in 5 minutes he said that it looks like essential tremor (uncurable, progressive disease with unconfirmed cause and definitive test) gave me some pills and told me to may be see neurologist. I am 41 years old, no family history of tremor but long list of prior TMS issues and stress. I am scared, anxiety through the roof, can get out of my head that this is must be IT that in the end gets me because of all previous stresses and what I put my body through. I will see neurologist but what good that will do if there is no test to prove or treatment. I already seen urologist and was diagnosed with “uncurable” IC/bladder pain before…

With all my might I want to believe its just TMS but symptoms just like essential tremor (doctor google, tremor stories).


Any advice will be much appreciated.


Thank you for reading.


Oksana

 

Hi @oksanad, I'm glad you can come back here to check in for reassurance, because I hope to provide that!

So before I tell you my story, I would like to point out that "essential tremor" is just two words which describe that you have tremors. As with SO MANY TMS conditions, that's all it does, which means that it's not a diagnosis at all. It gives docs a phrase they can apply consistently, which sounds like a diagnosis, thus giving it legitimacy in the eyes of patients. It's absurd. Laughable, in fact.

Your GP needs to update his education. The only true statement here is that there is no definitive test - which, if you apply your rational mind, means that it's almost sure to be a TMS brain symptom. "Unconfirmed cause" is the very definition of TMS conditions. "Progressive" is complete bollocks (and also malpractice IMHO) and I'm sure you already know what I think of the "uncurable" prognosis! Also bollocks, of course, because essential tremor is TMS, which, although we don't say that it can be cured, can certainly be brought under control with techniques and mindfulness.

Which brings me to my ET story. I was also told by a neurologist that I have essential tremor. I had a brief fainting episode about 5 years ago, which was undoubtedly the result of a bad cough, a heat wave, and lack of sleep, because the only thing they could find wrong was low blood potassium. An electrolyte drink (and more bananas and avocados in my diet subsequently) fixed me right up, but I had hit my head when I fainted (hardly at all) so I had to get CTs and later an EEG, followed by a debrief with a neurologist. I was, let's see, 67 at the time.

So this doc was very complimentary about my scan results and said that everyone would be lucky to have such good CT scans at my age (whoo hoo!) He asked if I had any other questions or concerns so I showed him how my hands were shaky, especially the right one, but told him I'd had shaky hands at various levels of intensity since my twenties. He did a few simple neuro tests and asked some questions, and said that it definitely was not Parkinson's (I had not thought it was!) but what they call essential tremor, AND that it's no big deal. He never even hinted at it being progressive, but strongly agreed with me that it was almost surely connected with my lifelong anxiety, and that it will fluctuate in intensity along with with stress levels.

I can't even imagine the level of stress that you are currently experiencing. Over here in the States most of us have no clue what it must be like to be so close to the physical danger of a monstrous regime invading and destroying another country, never mind having family members right there, losing everything and having to flee to another country. Just getting them to physical safety for now doesn't mean the stress is less for them or for you, it's just different, and it's still ever-changing.

And didn't we just see the one-year anniversary of the initial invasion? Damn.

So you can certainly see a neurologist, because we always recommend that folks get any new symptoms checked out even if they are pretty sure it's going to be TMS. As long as there's doubt, recovery will be hindered.

Mind you, my understanding of the NHS is that you could have a long wait, so you might as well use your time to reacquaint yourself with TMS techniques and stress management. Get back into the SEP, do some writing exercises, read Claire Weekes, and listen to Nicole Sachs. In fact, Nicole just re-ran an episode from last year about the Symptom Imperative (which you know is what you're experiencing) because so many people in her groups are reporting current struggles with relapses and doubt. Which is no surprise, given the current dysfunctional state of the world! Highly recommended!

All my best and good luck to you and your family.

~Jan

 

Hello @oksanad,
I also developed what my doctor called an essential tremor that has lasted for 3 years with no changes, aside from a recent increase that coincided with increased stress. I have been through CT scans, MRIs, and nerve conduction studies with no cause found. I too was warned of Parkinson's and many other scary prognoses. I'm now certain it's a TMS symptom in my case. It came on suddenly after a prolonged period of extreme fear. Recently, after having to provide 24/7 care for an elderly relative in my home (who was verbally abusive) the tremors got worse for a while and I developed numbness in my left hand. More tests led to a misdiagnosis of carpal tunnel syndrome and an ill-advised steroid injection that triggered complex regional pain syndrome in my hand and wrist. I am a sculptor, and the terror I felt at losing the use of my dominant hand made my symptoms spiral out of control to the point that my doctor (wrongly) suggested rheumatoid arthritis as an underlying condition. I have finally reached a calm state now that I know all the symptoms are brain-based and that my tissues healed long ago. Looking back, I can see how fear created my symptoms, which led to more fear as I catastrophized each one. Now, I have just found this community and am starting Day 1 of my healing journey. I just wanted to share this to let you know that you are absolutely not alone! I hope you can find time and space to take good, gentle care of yourself, even as you care for others, and I hope that life becomes easier.
All my best wishes for you,
M.H.

 

Welcome to the forum @Magic Hands and thanks for the good introduction! It sounds like you've landed in the right place

~Jan

 

Thank you so much for the warm welcome, Jan! I'm very grateful to have found this group.

 

Hi Jan, first of all THANK YOU so much for your kind words and encouragement!

Oh how i hate diagnosis part as it puts the label, i then research the prognosis and outcome is panic, fear and despair. What makes it so much harder this time is that i can not find any examples of anyone reducing / reversing their tremor. Like you, my hands would shake if i was nervous/stressed but apart from those brief moments it was ok. Now they shake all the time plus internal tremors. I know it will be enormous struggle to believe its TMS this time round.

I will start with Nicole's podcasts and Claire Weekes.

My hope is that surely my stress / nervous breakdown could not have caused irreversible/ irreparable damage to the brain/nervous system and it will all be ok again once i get calm my nervous system.

Thank you again for your support.

Oksana

 

Hi @Magic Hands, thank you for sharing your story. Its sounds all very familiar to mine with sudden onset. So many similarities with TMS as this is how most of its starts. Hope we both get it under control and sort our stressful life. Mine situation is similar to yours; we have my husband’s elderly parents moved in with us until we can find them care. His dad is partly disabled, and mum has dementia with behavioural issues so i know what you went through.

Best wishes for recovery
Oksana

 

Or, you can choose to assume that since it's a mindbody condition which is obviously worse with stress, you have the power to take control, work on managing the stress, and perhaps even be thankful when you are reminded (with tremors) that you need to be more mindful and apply yourself again.

I know you know that this journey is all about the ups and downs. The stresses of today's world guarantee that we will fall away from mindfulness on a regular basis. Our symptoms are there to remind us to get back on track. There is no point in assuming the worst. The world will go as it will go, and we can't control that, but we can have compassion for ourselves and control our inner response to the outside world.

My dear, you have already described how your symptoms reduce when you are not stressed! You are contradicting your own experience! You're not doing this consciously, of course, because this is actually your fearful TMS brain trying to convince you that you have no evidence of tremor reduction or elimination - WHEN YOU ARE NOT STRESSED. And btw, I may not have made this clear, but I've had tremors off and on since I was 20, and I'm almost 72 now. They were usually non-existent, but always noticeable under stress, even small, short-term stress (like doctor visits - my hands were nice and shaky the morning I saw the neurologist!). I don't think I ever felt the need to ask someone about the tremors until I saw that neurologist in 2018 who invited me to ask questions (now that I think about it, he must have had time to fill since there was nothing in my brain scans to talk about!).

As for your situation, this is a challenge, because you are pretty well stuck with these current stressors that have been thrust upon you, you have very little control over them, and your life is full of uncertainty. If you can, please find a way to embrace faith that as time passes, things will work themselves out. The one thing you CAN control right now is how you rationally react to the stressors. At this moment, your irrational TMS brain is giving you tremors and health anxiety on top of everything else, which you know rationally is not healthy for you. Your TMS brain doesn't care - it wants you to stay in this state of anxiety about your health, perhaps because it does not want you to contemplate your righteous rage and resentment about the stresses that have been put on you. And perhaps that's exactly what you do need to contemplate. If I was in your position, that's certainly where I would go, and the tool for doing that is to write it down.

Nicole Sachs is kind of the queen of writing in order to release emotions, but Dr David Hanscom MD has written a short and very useful article about how to use what he calls "expressive writing": Expressive Writing – Back in Control. The beauty of expressive writing is that you can do it anytime, and all you need is some paper and something to write with. Some people type into their computers, which is okay too, although I prefer pen and paper. You don't have to keep what you write (in fact Sachs and Hanscom both recommend throwing it out). I use crappy old notebook paper and fill up both sides with illegible scribbling as I simply write down what comes to the front of my mind without editing it or correcting it - then I throw it out.

Good luck!

~Jan