When it wasn’t a distraction...

still struggling on this road of back and forth with full acceptance of the diagnosis. Sometimes this syndrome makes me feel suicidal; I hate admitting that, but it’s true. It feels like a cruel betrayal. It haunts me like a ghost.

My pain and symptoms started 14 years ago when I began having weird pain and symptoms in my left leg, mostly behind the knee. The scariest symptoms is the constant tingling (not painful but ever present) on the outer ankle and foot when touched, pressed, or grazed. This has always made it hard to accept there is no nerve compression or damage. My pain is only in left side - never moved to right - and in low back, sciatic, glute, knee, hip. Some of those pains come and go and move around but there is always the tingling and the sciatic sensations when I stretch the leg and a weak unsupported feeling in left leg when straightened compared to right. Lots of left knee clicking and clicking in toes. Left leg is a bit weaker- feeling.

The pain is usually moderate, never severe. I have learned to live with it and compensate around it. Sometimes I think the initial structural problem caused me to move differently for so long, (I was a teenager and avoided doctors and treatment after hamstring injury, which kicked off the pain) that I then created imbalance and therefore pain in my hip, knee, etc.

From 19-23 I ignored the pain and rarely felt caught up in the syndrome. I had yet to learn about TMS. I stopped running and doing yoga and just lived life differently, compensating around the symptoms. But I largely ignored it. It wasn’t distracting me. In fact, what was distracting me we’re all kinds of other mental and emotional issues and addiction. But the symptoms were there. This makes it very hard to fully accept something structural hasn’t all along been causing the initial symptoms. Can anyone relate?

I had a low back MRI which showed minimal facet hypertropyhy at L5/S1, done by TMS doc Schecter, that he said was nothing. Hamstring MRI normal. Non-conclusive EMG tests.

I have done tons of TMS work, therapy, and recovery. I have been active even with the pain and symptoms. I have ignored it, pretended, believed and not believed. I am at my wits end because the syndrome has not ceased and I feel back at square 1. It is robbing the joy from my life.

I feel desperate to go back to mainstream medicine to see if certain issues were overlooked. Beyond that, I have a feeling that even something structural wouldn’t matter - that this is just the way my body is and feels now and it’s not going to change.
I’m not trying to earn pity but simply being honest. I learned about sarno in 2011, and I believe it and then don’t believe it. Constant symptoms tingling and sciatica? Why wouldn’t it stop, even for a week? When other stressors arose?

I fit the TMS personality closely. I am a worrier and fear-based and have a background of trauma and addiction, divorced parents, an emotionally abusive father when I was young. There are current stressors in my life. Even when I tackle all of this, do therapy, go running, practice yoga (my ultimate love that was stripped away when pain started) have fun, fall in love and get married, share about it, ignore it, journal, etc. the symptoms remain. So what do I do? I need help. Please help me.

 

Hi Stephani,

I guess you know that one thing to look for and begin to track is changes in symptoms, which you mention. You might begin to track how the various symptoms (the ones that do change) respond or change in response to events, stress, etc. This may help you begin to understand, at a deeper level the psychogenic nature of the symptoms.

TMS typically "feels physical." That is why it is so tricky to deal with symptoms, and the fear. It tends to manifest in ways which are uterly believable.

I guess you have done various programs on the Wiki and or Dr. Schechtor's or Dr. Schubiners books? And you have worked with TMS practitioners?

How much do you, in addition to other practices, make time to enjoy life, find pleasure, allow your nervous system to regulate, sooth, self-sooth, slow down? This is something I don't think you mentioned which may help.

This is a great insight in a way. You're seeing that once there is a fear and symptom cycle, it tends to be self-perpetuating. This in itself is evidence of TMS --the perpetual nature, since anything structural will heal/change in time, especially if there has been medical investigation showing no lingering issues.

Good luck in your work. Wishing you well.

Andy B

 

Do the things you love anyway regardless of the pain. That is what makes life worth living. It involves developing a different relationship with the pain.

I love yoga, too, and wrote the following post some time back that you may find helpful.

http://www.tmswiki.org/forum/threads/what-hatha-yoga-has-taught-me-about-pain.6512/ (What Hatha Yoga has taught me about pain)

 

Thank you for your response Andi. You make a lot of great points.
Yes I worked Dr. Schecter and Schubiner programs back in 2012. They did help in a way. And I do notice certain symptoms increase when I’m stressed or anxious or irritated. I can feel my glute tighten or low back. I guess I get frustrated that the symptoms only diminish at times, never disappear. And then I check up on them. I keep waiting for them to be gone completely and forever and to feel the way I felt before this all started. There is a lot of anger attached to getting this syndrome in the first place and a lot of self blame involved. My loved ones have repeatedly told me that I am perpetually too hard on myself.

One thing that has interested me is that the pain and symptoms were most diminished and ignored (still there but quiet) when I was highly distracted by an exhausting career. (I used to teach.) when I left and starting free-lancing, I was emancipated in so many ways and felt I got a lot of my life back. But the pain got worse again and pulled me into the syndrome and the fears of something physical. It’s been up and down since then (around 2015.) I think a lot of it is financial fear or guilt about not being a “career woman” any longer. And not being totally round the clock exhausted from work.

Anyway, today I emotionally feel better than I did yesterday and in less physical pain, too. I think tracking symptoms will be helpful for me.

 

Hi Stephanie71,

I think you're inquiring into the right places.

Being hard on yourself to me, is a very core piece for many with TMS. Part of what helped me was simply acknowledging the inner "tension" between the superego and the inner child, as one of the root causes. I knew a lot about this internal dynamic, but until encountering Dr. Sarno's work, I had no idea that the inner hell realms could cause so much pain! I see the superego powerfully working to keep up the (tension) game of denying feelings which threaten our (cherished) self-identities and self-images.

And being hard on yourself for not getting better is another layer many here deal with.

Interestingly, my foot pain started, or at least became debilitating when I quit teaching. Kind of like when Dr. Sarno described "going on vacation" as one of the triggers for symptoms for many.

Andy B

 

Thank you for sharing ur story and being so brave in telling us what you’re going through. I wish you the best.