Unclear TMS

The Sarno replacement Dr Rauchbaum in NYC said that because I just told him my leg is numb below the knee, he is not sure I have TMS and I should see my surgeon this Monday Jan 6 2019. This really scares me as I was working the Alan Gordon Program and was convinced I had TMS. Anyone had numbness in leg?

 

I met with Dr. Rauchbaum years ago. I have to be honest with you. I'm sure he is highly credentialed and and has all the expertise in the world BUT he didn't give me the confidence I needed. It was an intangible thing that was missing. He confirmed I had TMS but I remember not getting that boost I needed at the time. Some people have charisma and others don't. This is not to take away from him in any way as a clinician, but from a psychological standpoint, I remember feeling flat afterwards. He was perfectly lovely and nice too but it's an X factor thing I guess lol! It sounds like he wants to rule out anything structural or neurological to be prudent but numbness is pretty common with TMS. I had all manner of weird sensations....tingling, electrical feeling, feeling of ants crawling under my skin, burning, drilling feeling, flames, compression (like those blood pressure cuffs), swelling, color changes, temperature changes, bone marrow changes that could be seen on an MRI etc.. and sometimes numbness in toes.

 

Miffybunny, did you accept your condition as TMS and work a program? Did all these symptoms occur during a time of stress? Your posts are very uplifting by the way.

 

Hi tgirl, I'm so glad you find my posts helpful! I had several go arounds with TMS. I would recover but then my brain would keep upping the ante and come up with crazier TMS equivalents to distract me with. The reason for this was because I wasn't doing enough of the nitty gritty work on myself and in my daily life yet. The first time I had TMS, I suffered from lower back, piriformis and leg pain for a year and a half. I went to all sort of doctors (Chiros, physical therapists, took Ultram etc.) and no one could figure out what the heck was wrong with me. I was even diagnosed by a neurologist as having RSD/CRPS...that's what they tell you when they have no clue...that and fibromyalgia are typical wastebasket diagnoses (another one is Lyme...I went down that ridiculous rabbit hole too). Luckily I remembered Howard Stern talking about Dr. Sarno and I remembered how he had dedicated his book to him as well. I ordered "Healing Back Pain" from Amazon and saw myself on every page. Within 4 months I was totally better without doing any programs....the knowledge is what "cured" me because my fear evaporated. I knew a million percent I had TMS. Things got much dicier , however, when TMS reared it's ugly head again but this time really in the form of RSD/CRPS in the most extreme way....bone changes, temperature changes, color changes in feet and knees...at one point full body...I even had Ketamine infusions . I became extremely depressed about the way my legs looked aesthetically. This is how sneaky TMS is...it will always find a way to preoccupy you and distract you. It was a longer road to healing this time around. I needed one on one therapy with The Pain Psychology Center, I needed to make drastic practical changes in my life and I really had to change my whole personality in a way.

As far as doubts about having TMS, I did have some trouble with the RSD/CRPS because I couldn't find anything in the literature that described my symptoms. I was lucky enough to briefly speak to Dr. Schubiner on the phone and he did assure me that it was still coming from the brain and hence, TMS.

As far as stress goes, I had yeeeeeaaarrrrsss of accumulated, relentless stress. My younger son is severely autistic, my ex husband was gone all the time, both my kids had medical problems. I had no sleep, my younger son tantrummed non stop etc.... I was at my wits end and often homicidal and suicidal. All of that stress pushed my whole nervous system into tilt. If I can get better though, anyone can. That's really my message. It doesn't matter how long you've been in pain, how extreme the pain is, how much of a TMS personality you have etc....anyone can get better!

 

Thanks for your reply Miffybunny. I have leg skin nerve symptoms. Awful feelings of prickling etc. Doctors can’t find anything wrong and it doesn’t want to go away. So frustrating. Maybe I have to delve in more. I noticed there are some good videos by Nicole Sachs and Dan Buglio. I’ve been watching them. Something has to turn around. I’ve had a life of varying TMS symptoms and have had enough. Thanks. I’m so glad you are well.

 

Yes I had all those strange nerve sensations as well...electrical shock feelings, buzzing, crawling, burning, stabbing, drilling etc etc. The pain would move around my legs too and I would draw "maps" over the pain with magic marker. It was totally ridiculous!! I remember having one of those ekg tests too...total waste of time. Dan and Nichole are great! Are you in Dan's FB group? His videos are super helpful!!

 

Yes, I’m in the FB group. I’ve watched a few of the videos and found them encouraging. You sound like you’ve been through a lot. So your nerve pain just came out of the blue? Did you use a few tools to overcome TMS, or did you find anything in particular worked best? Thanks again.

 

Yes I've definitely been through it lol!! The nerve pain in my legs started after a strange injury I had in my pelvis. The initial injury healed but it morphed into crazy chronic pain in my legs and lower back and even priformis muscles. The nerve pain started up again in my feet and this time it was with a vengeance. I had bone marrow edema in each toe, my feet would change colors and temperatures, I couldn't wear shoes, etc....that was the start of the official RSD (which was really TMS). As far as tools, my biggest ones were therapy and using the concept of outcome indifference. I also had to persistently work on changing my thought patterns and I had to make some practical changes in my life. I never did any journaling or meditation. I skimmed through the SEP and read through Dr. Schubiners' workbook. All of those types of things are great tools but they are only TOOLS. They are not a magic solution and you have to enjoy the tool otherwise it's counter productive. If you hate journaling, don't do it because it becomes aversive imo. I did jot down notes to myself and I kept a little "evidence sheet" and things like that but I'm not a journaler or a meditator. If a person does enjoy doing those things, then that's wonderful because they are powerful modalities. "To thine own self be true" or "You do you Boo"...whatever works. The important thing is becoming aware of the chronic, habitual negative thoughts you are having on a daily basis, working to change those thoughts to less resistant ones, shifting your focus from the physical to the psychological (from your body to your LIFE) and really living life as your authentic self...not who you think you should be or need to be in order to make others happy.

 

Wow, so well put miffybunny. The stuff about the authentic life has me thinking. Thanks so much. xo

 

My hands were numb and EMG was abnormal. My official diagnosis was carpal tunnel syndrome and I was prescribed steroids and surgery. And of course opioids for good measure. It took me 3 months to get to the right diagnosis, which was CRPS/dystonia. 2 years to get rid of dystonia, 1 year to kill the pain. My finger is still a bit numb but it doesn't bother me. I have my life back.

 

Hi miffybunny. I just joined and miraculously I have the exact symptoms you spoke of. Burning, numbness, sciatica mostly in right leg but get tingly all over. I used to get palpitations and many of the other things listed as TMS symptoms. Just writing this my legs are shaky. I read The Great Pain Deception and it’s opened my eyes. I know that I have mind body issues for sure. I’m in a bad marriage that I needed to get out of 6 years ago, I have four kids, one with seizures (one just occurred yesterday -very distressing); and I have abandonment/rejection issues. Definitely have anxiety, and went through health anxiety for years, which is much better since reading the book and following The Anxiety Guy. I am in a state now of extreme sensitivity. Even if one of my kids gets a simple stomach ache or sore throat, I get irrationally panicky and worrisome. Any immediate advice? I feel like I know that concept but don’t know what to do on a daily basis.

 

Hi,

In my experience there were 2 parts to healing: the emotional/mental work I had to do and the practical day to day life changes I had to make. If you go under the Support Subforum, there's a thread called "An email" where I go a little more in detail. Basically you are in a constant state of hypervigilance and fight or flight. You can also read my story in Success Stories, where I recount some of the stressors in my life that are similar. For many years I felt trapped by my son's autism and lived with the pressure of trying to "save" him as well as the fear that he would die (he has asthma and lots of medical stuff). I think there are similarities in emotions to our stories. My whole nervous system went in tilt from years of stress and repressing rage and guilt.

If you have any other questions don't hesitate to ask!

MiffyBunny

 

I don't know how a mom with 4 kids can find time to meditate, but see if you can. Meditation pulled me out of CRPS. It rewires your brain to stop sending pain signals and calms anxiety.

 

Thank you! I do try to do it when I can. My brain pushes hard, but I will keep persevering.

 

Thank you! Yes it sounds similar. We love our kids so much! I am really feeling now to my core what is wrong and how it’s grown slowly over time. I am happy for you having gotten through it. I feel an energy of power sometimes so I know it’s there, waiting to break through and heal. I will read your story and the “email” thread you linked. Thanks so much! ❤️