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First Post - Complicated Case

M

mbsgal85

Peer Supporter
Hi Everyone:

I'm a 33 year old female with the typical TMS personality. Last fall, all of a sudden, I could not exercise on the treadmill anymore and my reflexes became hyperreflexive with stiffness behind the knees. For about a month before that, I noticed my feet were staying cold chronically. During this time, I had gone gluten free and was feeling a lot better in general. Over time, the cold feet got worse, and I was having IBS symptoms at the same time this all started. I went to the doctor, chiropractor, etc... and everything was coming out normal (besides some small antibodies for hashimotos - which the endocrinologist I went to see recently dismissed - I always found it odd anyway). Well, during all of this, I felt like I couldn't walk in heels all of a sudden with the pain behind my knees. I also wasn't as well coordinated as I was - my right foot also started having odd twitching in the big toe which has now advanced to all 5 toes on that foot. I went to the neurologist in January. He did an EMG and NCV. Everything came out normal. I also got MRIs on my brain and entire neck and spine. Everything came up clear.

Fast forward to early March - I went to the rheumatologist. Everything came out clear. I went to the movement disorders specialists about a week later that my neuro referred me to - they say I have a rare disorder called painful legs moving toes (PLMT). I don't have ALS, MS, or Parkinson's. Some days I wonder if I have ALS, and nothing got picked up on the EMG at that time (even though it was done around January 21st). There's the anxiety talking.

I have twitching all over - sometimes, my face has literally twitched (one side of it). Sometimes, I feel weak when I hold a coffee cup, or it feels like the skin is burning between my thumb and index finger. My hands feel like they burn. My elbows feel like something is pulled. I'm afraid my hands will end up like my feet and that somehow I will become totally disabled and unable to work, etc... which has always been a huge pleasure of mine.

I really feel like my entire life has been taken from me. I am a Christian, but I am having a hard time right now. I used to wear high heels, fix my hair, etc... and now I'm just someone with aching, twitching, spasming knees and toes (left isn't as bad as right). Now, I barely get it together. I can't help but think a lot of this is mind body as I was fearing several things before I was diagnosed with PLMT that would be progressive, and lo and behold, I have symptoms. I'm afraid I won't be able to drive. I'm afraid any increase in activity will make my symptoms worse (and I have seen this happen at times). I just don't know what to do next. I know I need to see my psychologist again, but I really think I might need to Skype with a professional that has an understanding of this type of thing. I feel like a total mess, and I just want my life back. I'm tired of my fingers hurting, tired of my toes twitching, etc... I just want to live again...a full life. As I type right now, my elbow has a spasm/twitch and everything begins to get sore all down my arm. Sometimes, the fingers tingle. I don't know what to do, but I have got to get things together and live no matter what.

I am including a video of what happens with my foot. It is almost continuous, unless I am sleeping. I'm desperate for help, motivation, and people that care. I feel like a lot of my friends/family think I'm crazy. It's been a rough road the last few months.
 

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mbsgal85 said:
I know I need to see my psychologist again, but I really think I might need to Skype with a professional that has an understanding of this type of thing.
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Hi mbsgal85, and welcome. I, too, hope that you can find the relief and healing that you need by embracing mindbody knowledge. But you're right, this sounds complicated, or extreme, and I would urge you to find a therapist who is experienced with and committed to treating mindbody conditions. There are more such practitioners all the time. There is a directory on our main wiki (tmswiki.org), although I don't know if it has been updated lately. There are a bunch of resources at the PPD Association's website, here: https://ppdassociation.org/resources/#online-recovery-programs (Resources — Psychophysiologic Disorders Association) (the first two listed are ours).
 
Where are you located? If possible, it might be very helpful to see a TMS doctor to provide you the assurance you need that you do, in fact, have TMS. Then, as Jan recommends, see a TMS therapist.

In the meantime, read Success Stories and listen to them on YouTube and in podcasts (Like Mind Like Body and Nicole Sachs' are good).

I haven't had the symptoms you've had, but have experienced a lot of twitching in my face and other locations off and on before I recovered from TMS. It all went away. There is hope.
 
Ellen said:
Where are you located? If possible, it might be very helpful to see a TMS doctor to provide you the assurance you need that you do, in fact, have TMS. Then, as Jan recommends, see a TMS therapist.

In the meantime, read Success Stories and listen to them on YouTube and in podcasts (Like Mind Like Body and Nicole Sachs' are good).

I haven't had the symptoms you've had, but have experienced a lot of twitching in my face and other locations off and on before I recovered from TMS. It all went away. There is hope.
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I believe I have TMS for the most part. The only irregularity that has shown up is elevated B6, which can cause some of my symptoms that are CNS related. That being said, I still believe this is likely TMS. I still think this is only something I can overcome with Mind Body principles. I am located about 3 hours outside Nashville where the lady who does Like Mind Like Body is located. I have had just about every blood test you can have. I am tired of my hands feeling like they are ripping and burning, but as far as I am concerned, I am having major TMS. Yes, I may have some B6 toxicity, but I still believe a lot can be defeated through mind body medicine. It is just so contrary to my TMS personality.

I am really looking for some support, encouragement. I have the Curable app and will consider purchasing some books. I am definitely considering a TMS therapist by distance (Skype, etc...). Has anyone had success with these things or seen a TMS therapist long distance?
 
I support your belief that it is all TMS related. Other people, including Steven Ozanich, who wrote "The Great Pain Deception," (check it out, if you haven't. His symptoms were VERY extreme and similar to yours. He is well now.).
Early 30's can be a pressure-filled time for women...for many reasons. I'm sure you're aware of them, as well.

I've had some of your symptoms and found they were very much anxiety related and that I started "looking" for them...and, sure enough, more would appear.

Also, Nicole Sachs has many videos on YouTube and has written a book. She has a great podcast as well.

Maintain your growing belief that it is TMS. Begin to journal. Write these words at the top of the page and then let it rip...."If I weren't so afraid, I would..."

You're young. Get back to enjoying your young years. Decide that this will pass. It will.
 
MWsunin12 said:
I support your belief that it is all TMS related. Other people, including Steven Ozanich, who wrote "The Great Pain Deception," (check it out, if you haven't. His symptoms were VERY extreme and similar to yours. He is well now.).
Early 30's can be a pressure-filled time for women...for many reasons. I'm sure you're aware of them, as well.

I've had some of your symptoms and found they were very much anxiety related and that I started "looking" for them...and, sure enough, more would appear.

Also, Nicole Sachs has many videos on YouTube and has written a book. She has a great podcast as well.

Maintain your growing belief that it is TMS. Begin to journal. Write these words at the top of the page and then let it rip...."If I weren't so afraid, I would..."

You're young. Get back to enjoying your young years. Decide that this will pass. It will.
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Your words just brought tears to my eyes. I cannot thank you enough.
 
Dear @mbsgal85,
When I was 30-31 years old I had my first episode of TMS. Doing SEP (available here at the forum) reading book, believing in TMS theory was enough to recover. It took me few months but I got my life back.
Try that, you can only gain.

good luck!
 
Hi Everyone:

I will probably set up an initial appt with Steve O. soon. I think that he is probably the best bet for me given his extreme situation. I am going to read his book this week and weekend, and then I will schedule one of the three hour sessions with him.

Thank you all so much for your encouragement. Please let’s continue this conversation. I am truly convinced I have TMS. Anything structural is not enough to be causing all my symptoms.

Thanks!!!
 
When you start even considering mindbody/TMS, can pain increase at first when trying to resume activity/work through pain? Remember how extreme my case is.

I am reading Steve O’s book! I also have a long session with him on Monday.
 
mbsgal85 - I'm the same age as you and was hit hard with TMS about 2 years ago. It began as continual fine twitches on the left side of my face (eye and lip). I panicked and thoughts I had MS and had all the tests, saw neurologists, had MRIs and it all came back clear. This helped calm me somewhat but I still worried deeply there was something structurally wrong with me and remained at a level of fear and panic. It took me until around 6 months ago, after getting therapy for anxiety (which im still having) to realise I have TMS. My symptoms still remain constant but they have changed- the twitches have become tingling and occasional low level burning. I wouldn't call it out and out painful its just very frustrating and its hard not to fear them. I am also a christian and this experience has challenged my faith and walk with God a whole lot. Since really digging into TMS work some other minor physical symptoms I had have started to shift and settle. Things like eczema on my left hand, frequent abdominal pain (which I always assumed was from scar tissue around my ovaries) and restless leg syndrome. All 3 of these have always just been little niggles in life I just thought I had to live with but since doing the TMS work they have started to improve which is really interesting. My face has yet to get on board with this though! I guess that's because on some level I still fear it.

If you're reading lots on TMS im sure you've begun to connect the dots between stressors and the onset of symptoms. It helped me to write out when various symptoms began and how stressors correlated with this. Gather as much evidence to reassure your brain this is infact TMS. Take stock of your stressors. Mine was triggered by a stretch of unsuccessful and challenging infertility treatment, proceeded by lots of other classic situations, personality traits and traumas in my past. They all set the stage as it were and the IVF sort of pushed my body over the edge I think.

I keep telling myself "the only way out is through". Doing this work is the only way through. I have to accept it may take time and yes its really hard especially on the days my facial tingling is going crazy and I feel like im being sucked back in to fear, but I know my brain is changing every day, its literally rewiring with every journal entry, every choice to remain calm, every therapy session, every meditation. My face will catch up. it has to. I just have to keep letting go of fear and frustration. I also have to hope that God is using this for my good. That in a weird way TMS is a bit of a gift, something to wake me up from the unhealthy amount of pressure I was under and the baggage of repressed emotions. I hope you can find this for yourself too.
 
I talked to my neurologists and got clearance on my diagnosis. I'm pushing ahead as I was already starting to do. Steve O's three hour session was very helpful, and he gives you a ton of resources during the process of that three hours to think about what is going on.
 
mbsgal85 said:
I talked to my neurologists and got clearance on my diagnosis. I'm pushing ahead as I was already starting to do. Steve O's three hour session was very helpful, and he gives you a ton of resources during the process of that three hours to think about what is going on.
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Steve O. has a great understanding of TMS. Proceed ahead. Results will follow your beliefs. Tell yourself "I'm 100% willing to believe that these symptoms are psychological."
 
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