All Four Limbs!

Hi there all,


I’m a long-time lurker, first-time poster. Because reading people’s TMS stories has been so important for me in struggling with TMS, and because I need something to write about as I slowly re-introduce myself to typing, I’ve decided to share my story so far here. And it looks like it’s going to be a long one …


Looking back on it, my physical problems began during a period of intense stress for me, though I didn’t really appreciate this at the time. I’m an Irish citizen and I had been living in the US for two years. I had always wanted to work in the US for a period of time, as the industry I work in is much more developed there and there were opportunities to get good experiences on my CV. I had also enjoyed a more relaxed, fulfilling social life any time I had spent some time state-side, I have no idea why. It just seemed easier for me to be relaxed, to talk to people, and to ‘be myself.’ I had worked for a summer in the US back in 08, and ever since then this notion has remained with me. In 2014, an opportunity presented itself.


After close to two years in the US, things had been going as I’d hoped they would. I was surrounded by people who were very career-driven and competitive, which made me expect more from myself. I really threw myself into being better at work, and putting more into the job. This in turn gave me more confidence socially. My successes transferred. It became easier for me to make friends or ask women out. They even asked me out! I took up running and found I was not bad at it, doing very well in local races. I saw myself as an athletic, confident person for the first time. I liked who I had become.


But darker things were rumbling beneath the surface. Living in a country where you don’t have citizenship comes with a thousand caveats, major and minor. At the end of both years in the US I had to spend most of my free time researching my VISA situation, making phonecalls, dealing with Homeland Security (it ain’t part of their job description to be friendly) and desperately trying to find out how I would wrangle another visa. It wasn’t simple, and I was left wondering for months each time whether I would be accepted or not. Finally, I had a dream job lined up: a real step-up in terms of responsibility, one that would put me in the best possible position to continue my career when I went back to Ireland.


But it meant being in the US another 2 years, and a strange kind of guilt was starting to creep into my thinking. Guilt at being away from home and family too long. Even though I didn’t relish the thought of slipping back into my old persona, as I thought would happen for sure if I went home, I now believe that this need to be home was weighing on me a lot more than I realised.


One day when out running, I had a dull ache in my foot. Athletes are notoriously stubborn though, so I ran through it and it went away. Not wishing to be stupid, I left off running for a few days. I must admit though that I still was hiking a lot every day at work. A week later, running produced the same pain. I waited another week: no improvement. I was reluctant to accept that I would have to stop running for a while as it had become a huge part of my new identity as an athletic go-getter type person. So, while I did lay off the running, I immediately took up off-road biking for fear of becoming lazy.


Two days later I woke up in the morning unable to stand, my sole and arch was so sore.


Immediately I got the impression that this was to be a stubborn, long-term problem, as it was the same problem that had been troubling me during my runs for a few weeks, and even though I had been ‘taking it easy’ (by my standards!), it had not gone away but in fact gotten worse. I dealt with this very badly, becoming instantly depressed and feeling helpless and useless. I took five days off work and didn’t leave the couch the entire time but the pain didn’t change one bit. This was very worrying. I had never had an injury that didn’t go away within a few days of rest and icing. And being an alien whose visa was tied to my job, I could not take any long-term time off. And remember, my job required me being able to hike around for several hours a day, which made me very uptight as I was convinced it was making the injury worse.


I took a few days working in the office instead of being outside, doing quite a lot of typing and also doing a lot of writing in my downtime, nothing more than I had done many times in the past. But within a couple days of my foot getting bad, an old injury from playing double bass came back: tendonitis in my left hand. I didn’t pay much attention to it at first: I had had occasional recurrences of it in the ten years since. Nothing that lasted more than a few days. But it did not go away. Slowly, I began to worry. It had taken about nine months to heal last time, and this was much worse. I didn’t use my left hand for anything now.


I saw a doctor and a physiotherapist, took ibuprofen for a few weeks, did stretches and wore insoles. Nothing about the pattern really changed: the pain in my soles would calm down for a few days, I would start walking normally again, eventually something at work would mean that I had to hike around for an hour or so, and then I would be in agony for days on end. Apart from the occasional bit of work time, I stayed off my feet as much as possible for weeks and weeks. It was really starting to effect my self-esteem and sense of self.


Within a week of this happening, I had to visit the dentist and afterwards found that my neck was extremely stiff. Again, I didn’t pay attention to it at first, but it got worse to the point that I could not sit and work at a computer or read a book for more than a couple of minutes. Now I was really falling apart: I felt as though any possible activity I could use to help me get through this was being taken away from me. And then my other foot went: I was standing in a library, trying to take my mind off things, and having been overcompensating on my good foot for a week, it began to ache in exactly the same way.


I was really starting to doubt whether I could (or should) move to Wisconsin for my next job. To make everything worse, before I could start the job I had to move house and attend an intense 8-day first aid course in an extremely remote location, hundreds of miles in the wrong direction from where I needed to go afterwards. The course was very specific for the job and I had no choice. I was worried sick; at this point my neck was so bad I didn’t know if I could drive. The life I had just two months earlier felt like a scene from another panet.


The first aid course was the last straw. Being surrounded by people who were training for the kind of outdoor jobs I loved and unable to participate except in the most humiliating way, my anxiety skyrocketed. My life was falling apart. Every movement filled me with worry that I was making my injuries worse. I hobbled around the grounds carrying a little fold-up stool. I sat down every second I could. And after taking a canoe out for one hour soas to get some exercise that didn’t involve my feet, the next day my left hand was throbbing with pain in a way it never had even ten years ago when I first injured it. I now couldn’t even use it for eating and brushing my teeth. Everyday things became a nightmare, and all the time dealing with a terrible decision: was this pain so bad that I would be unable to accept my great new job, and instead somehow figure out how I was going to get back to Ireland? I could think about nothing but pain. Would I ever be normal again?


And then my right wrist began tingling.


I panicked, teared up and completely lost it – there was now way I could lose that hand too! Sure enough, the next day it was giving similar symptoms to the right hand. I was now unable to use all four limbs. Somehow I made it to the end of the course and drove out of there with both my hands burning like they were on fire just from using the steering wheel! When I got to the first town where I knew somebody I pulled in to a gas station, made some incoherent phonecalls and had a panic attack.


I stayed with friends for a few days, called my new job to cancel, and began figuring out how I was going to get home. I crashed at a few different places on my way to the nearest big city. I was lucky enough to have lots of friends in the area. I was fanatically ice-dipping my arms constantly to bring the pain down to a tolerable level.


And then, frantically scanning the net for any news about anyone, anywhere who had recovered from such problems (forums for people with PF and RSI are a deep, dark black hole full of people who have suffered for months and years, with no ray of light) I came across an extraordinary story from someone who had a ridiculous number of symptoms, like me, and discovered that they were in fact not physical, but emotional.


This was literally the first time I felt any positivity about my situation.


This guy mentioned John Sarno. You know, I don’t think I would even have taken it seriously except the name seemed somehow familiar … an alternative care practitioner I had consulted previously had mentioned his name. I hadn’t given it much thought at the time. Not only that, but for the first time, here was somebody touting a near-miracle cure who wasn’t trying to sell me anything. Sure, he encouraged the reader to go get Sarno’s book, but he suggested that we get them cheap off Amazon, or any damn place we could find them.

And as I discovered more about the TMS community, I was impressed by one thing over and over: this was a group of people who genuinely had nothing to sell, but who just wanted to ‘forward’ the information that had changed their lives. There’s no media organization overseen by Sarno the guru, just individuals who pass on the word.


By the time I got back to Ireland I was convinced. There’s been no miracle cure, however. I was far too terrified of causing myself damage to test my body with anything that still caused pain (and that was most things). But I started paying attention to the inconsistency of the symptoms. They had each come on during a period of intense stress. They came and went without regard to physical causes, mostly. And once I started journaling and trying to process my emotions, crazy new symptoms started coming on, mostly recurrences of things I had suffered from in years gone by and forgotten about: constant running nose, rosacea-like blotches on my face. Again, no cause-and-effect seemed to explain these. I figured TMS was starting to get on the run.


I started visiting a physio who has a very deep understanding of the connection between mind and body when it comes to pain. He foregoes the physical manipulation, as it is in many cases something of a placebo, strengthens my belief that there is nothing structurally wrong with my arms, and encourages me to continue returning to normal functions in a controlled manner. I have learned the myriad ways in which pain signals can continue after damage has healed, how the brain becomes more sensitive to pain after long periods of pain, and how fear causes pain. It has been extremely helpful to learn how informed, up-to-date medical care really does confirm many of Sarno’s ideas. It makes me cringe to think of the attitudes of previous practitioners I went to. If I have learned nothing else, it is that it’s worth shopping around for the right person.


I still feel as though I have a VERY long way to go. Everyday now I do a slowly increasing amount of typing. I walk and cycle small amounts, I swim a lot, and just generally try to keep as busy as possible.


My nervous system has been entirely frazzled by this experience, though, and there are still days when the merest pain can send me into a downward spiral that ends up in a panic attack. I have a lot of anger as this condition has literally taken everything from me that I though I was or could do. My entire life is on hold. I am meditating lots, trying to accept that I must be in a calm situation free from responsibility (it’s been hard to forgive myself for being unemployed and unproductive creatively), occasionally recording podcasts and doing simple social things.


I hope to hear from you all and I believe that I will be able to report more positive results very soon.

 

Welcome to the forum he-who-has-a-most-marvellous-username. You weren't kidding about the long story but hey, this is tms, it is how our biography becomes our biology (Caroline Myss. Not a quack, simply deeply mystical).

Given you've been lurking for a while I suspect you know the drill and by the sounds of it you are embracing the healing path nicely. Only one teeny weeny little red flag could be trying too hard to heal. We all do this. Repeatedly. Until we don't give a feck anymore and then somehow the body loosens and the mind starts paying attention to nicer things. Bird song, animal shapes in the clouds, singing along to a decent tune on the radio...you catch yourself actually living.

This forum is a first-class joint packed to the gills with the kindest, sweetest, most generous online community I have ever been a part of. I look forward to more of your words and most especially to your healing.

Warmest regards,

plum

 

Hi steampunk,

I reconize somuch in your story.
I suffer from footpain. Started now almost 4 years ago. In between had terrible shoulderpain and some other issues.
The footpain is the big issue. I have been improving every year (from really not been able to walk a step..or even have a shoe on that foot) to where i am now : I can manage now..have improved enormous: But still not able to walk more than 15 min at once.
So all the doctors..scans..etc nothing
The last 6 months i have been reading the tms books..abd a lot here.
I was aware of mindbody before : Had a therapist who mentioned it : At that time that made me so upset and angry.
Now after all this time..i am a bit wiser learned some stuff about me
Now..i am open for this concept.
Like you i feel i have more 'work' to do..not there
But what i really notice in your story is the intensity about it all : When it started the panic and instant depression
I felt a complete loser : About losing my job..not being able to 'perform' at anything
Quilt and fear
And when starting a therapy: Like now tms approach : The same intensity
A sort of all or nothing atitude i know so well.
I am slowly starting to learn i guess that i must learn to 'tone it down' not everthing has to be 125 %.
In the beginning : my only thoughts where : When..how long..etc
I am letting go of that and i must say it helps.
Lately i had some flares of hope that maybe life can be good again. That is big.
Actually : Some days are good at the same time still have pain and are limited
I learned progress can mean other things than pain free. And these things all together are more important for the overall recovery than i first realized. Reading here has helped me a lot and also keep increasing my walks.
Thanks for your story too and hope things keep improving for you too!

Greetings
Karina

 

Steampunk, you should put a couple staples in this post and sell it as a book. Just teasing of course, I hope you felt better after seeing your story laid out like that. It often helps set the stage for the journey because you see your history in a form which gives the mystery a face. I read stories like yours literally every day. So be of great cheer. You found your grail.

Here's the most troublesome thing you wrote <<I still feel as though I have a VERY long way to go. >>

You are already resisting healing as your brain stands strong to protect you. It's ok, and not wrong, but I wanted to point it out early on. We are our beliefs. Our beliefs are the deepest aspects of ourselves that make us who we are more than anything else. Guided imagery and learning begin the necessary shifts. To see yourself as "going to struggle" sets the stage for struggle. But this is ok, and normal. The brain only lets go of its stranglehold when you no longer need your symptoms.

Healing is not linear, nor does it have to take long, unless the rage is still threatening you. Slow healing is often safer. Just know why you feel you have a very long way to go. It's because you still need help coping. It's not a sign of a problem, but just be aware.

The pressure to heal adds unnecessary demands that paradoxically inhibit healing. So never try to heal.

Good luck
SO

 

Just a TMS 101 observation for you Steampunk.

1) You mention that your new found sense of identity as a runner/outdoors person has been threatened/negated by the symptoms.

2) You mention this has generated anger.

3) You mention that this has led to your entire life now being on hold.

That is basically the holy trinity of TMS.

 

Thanks for the responses, everyone. Yes, I certainly believe that this is a great place to get some support and advice!

I sure wrote a lot up there. But writing it has been a part of me trying to understand it. Also, I'm very excited at being able to type again! For a while it felt as though I never would again.

It is very true that I've been trying to heal too hard! For quite a period of time, I was so incapable of doing just about ANYTHING that I couldn't find a way to distract myself or get on with my life in any kind of normal way. Literally the only way not to feel depressed was for me to feel as though I was doing something positive to deal with the pain.

My hands and back have been getting much better. I am gently re-introducing myself to a moderate level of mobility and social activity. My hands and back are much better.

Went out to a party this week, cycled across town to get there and basically engaged as a normal person for the night, and guess what, no pain! BUT I was for the first time thrust back into a situation that mirrored my old life. I felt like I was slipping back to my old, less confident self. Nothing bad happened, it's a subtle feeling but one that has big repercussions for me.

And what do you know, next morning my rosacea was back with a vengeance. Big, angry burning blotches all over my face. Haven't had anything like that in YEARS. TMS is very sneaky; it knows this is a symptom that troubled me for a long time in the past and is intimately linked with my old self-esteem issues.

But you know what? I am not going to dwell on it, and it will clear up. It's only TMS. I'm still thrilled to be able to type, drive and cycle around town. I've even played a little music this week with no pain or anxiety afterwards.

Thanks again for your thoughts, everyone. This is a good place.

 

Plum I completely agree that a huge part of what's goin on is the body being uptight because of stress and focusing on the pain. When we expect pain, our body tightens and pulls on tendons and then pain comes! I've been living my life as much as I can, only spending about an hour or so a day, as Sarno recommends, reading about TMS and journalling. Thanks for the advice.

Karina, sounds like you are an intense person like me! I never thought I was a perfectionist but all this has made me realize that I have had very strict expectations from myself about how I ought to be achieving things and that I must be putting a lot of pressure on myself. I have no idea ho to express anger or properly relax either. But at least I know and can start being aware of this.

Thanks for your thoughts too Steve. It is difficult not to put pressure on myself to heal, of all things. It already feels like my old life was forever ago and it's only been 3 months. I like what you said about belief though, and am allowing myself to be positive. The healing not being linear is also a very powerful idea as it releases me from the fear that healing is being 'interrupted' by a period of recurring pain.

Huckleberry, if I read you right I think you are noting that my story hints strongly that TMS is the real cause of my physical troubles. It is very powerful to have confirmation of that!

Thanks again, all

 

There has been progress - things have turned a corner!

My physio told me this week that there's pretty much nothing wrong structurally with my arms, I DO NOT HAVE TENDONITIS. My feet are almost healed too, there's nothing wrong with them that would be made worse in any way by a bit of walking around. WOW, it was so powerful to be told that from somebody who specialises in the physical. This allows me to focus entirely on the emotional now!

What I do have, however, is a tremendous FEAR and anxiety of using my limbs at all, in any way, despite the evidence that the pain is not caused by activity.

So I've been instructed to play guitar for an hour several times a week, walk for an hour several times a week, face the fear and PROVE to myself that I am perfectly fine. And that's all I needed to take the plunge.

At first I was so scared. It was like jumping off a cliff. But it's been a few days, and I've had NO PAIN that could be directly attributed to my increased level of activity. I've been jamming out on the bass guitar with my family, and today I walked on the beach, went bug collecting in the sand dunes (I am a biologist) on hilly ground in beautiful West Cork. It's incredible! Last week I would never have believed that I'd do such a thing.

It hasn't been a miracle cure, of course. TMS continues to throw weird symptoms at me: bouts of arm pain that bounce from place to place, some insomnia, rosacea, allergic reactions. But all of these come and go rather quickly without stimulus; it's clear that TMS is desperate to find a new distraction.

I'm still struggling with anxiety and would appreciate your thoughts on dealing with that, but I'm journaling, meditating, embracing my feelings and have hope and belief that this is the beginning of a new chapter.

 

Update: mostly good!

I'm a lot, lot better. I play music as much as I want to, I work part-time in a job I love, I'm looking out for full-time work and I'm starting my own business because I'm not waiting for someone to appear and give me the well-paid, full-time version of the job I love. I'm reasonably physical: I'm not afraid of day-to-day moving about, I'm on my feet constantly for work and I take long walks once in a while. I'm still building up to doing a serious mountaineering or camping trip though, and I haven't gone back to running yet. I meditate, allow myself to relax, make mistakes, sometimes do nothing useful for a whole day and allow myself to be ok with that. Mindfulness has changed everything for me.

And I do all this while TMS throws literally everything it can at me. Every two or three days the symptoms change, but TMS is constantly trying to distract me with some combination of the following:

Foot pain (the most persistent as it's the one I'm most scared of)
Hand pain (comes and goes so inconsistently it's ridiculous)
Back pain (rare as I really don't take it seriously)
Rosacea and facial skin peeling (very hard to ignore as it kills my self esteem)
Severe colds (suffered from all my life, now I ignore them and they go away quickly)
Foot sweats
Severe anxiety

I have to say that even when all is going well, I only feel like my old self once in a while. I don't feel like the same person I was before this all came on. In some ways that's good as I understand myself and my stress-causing thought patterns a LOT more. And I understand how this was building up for a long time before it happened. But I miss the confidence and self-belief I had before. It will come back - that's just one more thing not to worry about and it will happen naturally.