Your stories - Radial Tunnel Syndrome - or TMS?!!!

Hi all,

This is my first post here … so, hello!!

I would really appreciate any insights on my case … which involves chronic upper back pain and chronic scapular pain, as well as what looks very much like Radial Tunnel Syndrome. I’ve summarised my story below - which I apologise is necessarily a bit complex (I have summarised from two large files of 'medical notes'!).

If you don’t have the 5 mins needed to read my story (below), I’ll cut straight to my question:

"Does anybody have any personal stories where you have successfully healed Radial Tunnel Syndrome like symptoms through a TMS-oriented mindbody approach?"​

My story starts over 25 years ago with nagging and increasingly persistent upper back and neck pain - on the right-hand side. Like most of us, perhaps, I put it down to 'getting older', and overdoing my garden and DIY projects with zest at the weekends. Several physios took a thorough look, and I religiously did all exercises ever given to me – no improvements. I became very busy with family and work life and didn’t really have time to look into the cause(s) any further; I just tolerated the (increasing) pain and got on with life.

A few years ago, I took early retirement. Unfortunately, things didn’t get off to a great start at all on that front and I noticed a new symptom emerging … this time it was forearm pain (the same side as my back and scapular pain). I had suffered over the preceding years from what physios had referred to as 'RSI' … the usual story it would seem – too much typing in an insanely busy office career. At the time, I had bought a new mouse, and other computer gadgets and – again – just tolerated it; I was too busy to have it get in my way. But when I retired, my forearm went into a very painful state indeed.

Through my own research, I convinced myself that I had radial tunnel syndrome – the pain was precisely in the places which this syndrome identifies. Several physios disgnosed different conditions - including tennis elbow, and posturual issues (but not radial tunnel syndrome), and did their best - including a good dose of shockwave treatment! No improvements. In fact, the nerve gliding – which was supposed to help free up my radial nerve – seemed to make things much worse. I was getting very concerned and frustrated about my loss of full arm function; most of my retirement happiness depended on being fully fit and able!

I took myself off to the GP, and then on to an orthopaedic specialist – who ran a detailed physical exam, x-rays, nerve conduction. Nothing obvious. He put it down to some 'possible radial nerve irritation' and advised me to rest when it got bad and try and not let it get me down. I went to see him a few months later and he asked me how I was generally. I mentioned my bad back and scapular pain, of course. A cervical MRI was requested and – tada! – a pinched nerve at C3/4 in my neck. My orthopaedic specialist said that a pinched nerve at this level couldn’t necessarily explain all of my arm symptoms, as these would typically be associated with an 'abnormality' further down the spine – C5+. But it was certainly 'something' and he thought it would be sensible to have a spinal consultant take a closer look and give me his opinion.

So, off to the spinal consultant … who repeated the cervical MRI … and … ‘tada!’ (again) … a pinched nerve at C3/4; this time with a bigger and better name: “Cervical Foraminal Stenosis”. Crikey - I was worried by that - I had a structural problem! – that had to be bad news, surely?! But, again, my spinal consultant said that he could not be confident that this was causing the symptoms in my arm, or those in my lateral scapular region – we had better do more tests. And so, off to get a CT-SPECT scan – this time a yummy radioactive potion into the bloodstream. The CT-SPECT came back clean with the exception of some minor osteoarthritis on my shoulder joint – which I was already aware of and was not causing me any problems. Just for good measure, my spinal consultant said he could do a surgical procedure on my neck straight away if I wanted it – he would "go in through my throat, take out the damaged bone, and then fuse together what was left". I wasn’t ready for this ‘offer’ and was completely terrified. I remember on the way home my scapular pain going off the scale. I decided to pause and reflect before acting.

By this time, strangely, my arm symtoms had settled down to an almost normal state. But then a new symptom came along – this time, vascular in nature: my right hand went a nice mottled blue colour intermittently; particularly while I was working on my knees in the garden. I took myself off to the GP again, who forwarded me onto a vascular surgeon. Hmm … “it could be Thoracic Outlet Syndrome – but I’m not sure”. I was referred up to a more senior surgeon. Hmm … “it could be Thoracic Outlet Syndrome – we had better run a CT-Venogram". More terror from me about my body evidently falling to pieces!!! Off to hospital for another radioactive potion to be injected into my vascular network to get it assessed. While I was waiting for the results, I decided to see a Thoracic Outlet Syndrome (TOS) specialist to get a second opinion. This gave me the opportunity to acquaint myself with the surgical procedure if it had been necessary - axillary entry (through the armpit); probable deflation of one lung; slice through the scalene muscles and whip out the first rib. Right! More anxiety and stress as I considered the need to do this operation, and how it might go. And whether I should get this done before the spine, or vice-versa?!

Ultimately, my TOS specialist concluded that I may well have some Neurogenic Thoracic Outlet Syndrome, but it did not warrant an intervention (I agreed!). In his opinion, conservative physio-treatment was not straightforward - quite reasonably saying that unless the physio was under controlled governance from a surgeon (not easy when it would have been 250 miles away) then it could not be guaranteed to help, and may in fact make things worse. So there was nothing obvious I could do about this unless it got worse ... more of a sense from me that was losing control of my life!

In the meantime, the CT-SPECT scan came back ‘clear’ – my vascular surgeon concluded that I had no evidence of any Thoracic Outlet Syndrome (disagreeing with my second opinion from the TOS specialist). He simply concluded that I had some ‘vasomotor disturbance’ which was a ‘nuisance rather than a problem’. Back to square one.

My spinal consultant then came back to me and asked me whether I wanted the spinal injection which we had discussed when we had met? Well – nobody had seemed confident that all of my symptoms could be explained by my C3/4 stenosis. I had been told that the injection would have both a 'diagnostic' (confirmation) and 'possibly therapeutic' (pain relief) aspect, but I'd already concluded I was not going to have surgery under any circumstances, so there was little point, in my mind, getting this positive 'diagnostic' step done, just for the sake of it. And I had read that the efficacy of the therapeutic aspect of such an injection was very patchy. I was also aware that there were risks associated with such an injection. I also felt utterly overwhelmed by all the various different disciplines involved in my case – and it seemed to fall to me (with no medical training or experience) to try and piece it all together and make a sensible decision as to what I should do. Why on earth was I best placed to make that decision?!! So, NO, I did not want an injection!

I concluded that I had had enough of all (albeit well-meaning) medical practitioners, but delivering collective ambiguity and confusion, and taking away any sense of control I had on my health, and life. I decided to take myself 'off the pitch' and I switched off all medical consultations and procedures. I had had enough. I also had a sense that the stress of the whole experience had not helped – and, in fact, my pain had got a lot worse during the 18 months which had elapsed from the first to last consultation. Pain flare-ups in my scapular region were coming thick and fast and becoming very distressing to deal with.

I shut myself away and began to do my own research into chronic pain .... It soon dawned that not everybody with 'worrying' MRI evidence experienced chronic pain, and that not everybody with chronic neck or back pain had 'worrying' MRI evidence. Hmm! I felt pleased I had not agreed to a spinal injection, let alone surgery!!!

I decided to go down deep into neuroscience research and really educate myself about the mindbody connection. I read books by Deepak Ravindran, Georgie Oldfield, John Sarno, Howard Schubiner and John Kabat-Zinn. Perhaps like a lot of your own experiences I felt that my own story literally jumping off the pages at me as I read – I literally felt like somebody had been following me around for my life and and had written my own story: I had a 100% fit to TMS-oriented personality traits, I’d experienced a very difficult set of circumstances in my childhood, education and working life. More recently I’d developed all sorts of movement phobias to try and keep myself out of pain, including not brushing my teeth with my right hand, walking with one arm on my waistband, not washing up (spoiler alert: not a great family skill!), not digging the garden, not looking up and to my right, not lifting even moderately heavy items. I had also become obsessed with what my right hand looked like - was it blue, or not? I stepped back and looked at myself: I had become competely obsessed with my pain, the limitations it was placing on my life, and with the stress of HOW on earth I was going to get myself out of the mess I'd got into?!

To bring you fully up to date, having done daily meditation for a few months I’ve just started to get to the bottom of my emotional status and try and piece together a way forward. It’s very early days, but I think I can see a glimmer of improvement in my back and scapular pain. I’ve also successfully challenged myself on my movement phobias and I’m doing well on that score. I’ve also got myself highly active again and have joined a walking club (12 miles at the weekend). I've done a lot of work trying to reframe my overall outlook to my pain and my life. I've just succeeded in getting a part-time job, which I hope will help on all levels!

The unwelcome guest in my current world is that my arm symptoms have literally just flared up again – after having been settled for over a year. The same grinding pain through the forearm radial tunnel; loss of dexterity; feeling of fatigue. Had I overdone the gardening again (which – ironically – I had been increasing in order to challenge my movement phobias)? Perhaps the modest exercises I’ve been doing recently to try and improve my shoulder fitness have upset the radial nerve again? Who knows?!!

And so to my question … I’m aware from some older posts that there may have been some success in challenging Radial Tunnel Syndrome as a TMS-oriented condition. What I don’t want to do is say to myself “all of my pain except my forearm is TMS-related, but I’ll just have to work around my forearm and continue to favour/rest it and just hope that gets better”. Such an attitude might feel pragmatic – I can always come back to the arm later. But I feel it probably brings me up short in terms of defining the scope of my TMS to target and challenge myself with. I’m also aware of ‘symptom migration’ – i.e. the propensity for TMS to ‘pop up’ or ‘re-emerge’ in parts of the body away from an area which is being / has been challenged. Perhaps this is what is going on?

Here's my question:

"Does anybody have any personal stories where you have successfully healed Radial Tunnel Syndrome like symptoms through a TMS-oriented mindbody approach?"​

Any feedback would be so meaningful to me .... it’s taken me a while to pull together the rationality of my back/shoulder symptoms being non-structural. For some reason, my arm feels a step beyond this - perhaps because it's so precisely located and a bit less ambiguous than 'back pain'. I’ve just got this nagging doubt that my arm could yet prove to be a structural problem which undermines the glimmers of progress I seem to be making, and might take me backwards. Any personal experiences which align with my situation would be really helpful.

Thank you so much for your patience and attention in reading my story.

David

 

I think you have the answer as well as the question in your post! You have identified your TMS character and understood the science behind it = how our repressed stress and emotions are literally held in the body - giving us pain...
So - when you had a recent flare up (after arm pain was better for a while) you seemed to look for a physical cause to that....would it not be better to look for an emotional/psychological cause - a 'stress trigger' in your life? Something that happened then or a decision made that 'triggered' the TMS part of you and created the flare up....? Maybe do some journalling about it and see if any ideas come up - think about what we do with arms - what sayings do we have? 'I have more than enough to carry', 'Trying to keep all my juggling balls in the air' 'Holding on for dear life'
You are obviously intelligent and thoughtful - but as a TMS character - are you giving yourself enough care? - rest, relaxation, being 'let off the hook' ? Are you taking time just to 'be'? - many of us have that 'perfection' thing going - so we start treating getting better from TMS the same way - 'Am I doing enough?' 'Should I be doing more' 'Am i doing it well' When a big part of curing ourselves is bring really, really kind to ourselves - it often gets left out - so check your life - are you factoring in enough 'Kind to yourself' time?
I had a neck injury from a car accident and worked as a landscaper for years - so when I had Fibromyalgia and went to a chiropractor they found loads wrong with my spine - so much i had to have treatment every 4 months for a couple of years - until i wised up and realised it was not helping! Now I am healthy again (after 22 years!) I work at landscaping - although I am now semi retired - soon to be retired - because I just don't want the stress and hassle of work.... it triggers me and I can do without it. I have changed the way i live so that i can manage on much less money (no work no money!!)
But all those things wrong with my back - have not stopped me being able to work a really physical job since i cured myself - so they were not an issue.... But you can bet your bottom dollar that if a trigger happens (family occasion/too much work taken on) I will suddenly get a bad back - or my neck will be painful..... I just call it out now - as TMS and get on with my life - I am cycling around Scotland this summer - I will not let pain get in the way of that!! (although I may whimper at every hill!)

 

Hello,
Thank you so much for reading and replying - I really appreciate it.
Yes - it's rather interesting that I reached only for a physical cause of my recent arm flare-up! I think it just underlines that I'm still finding the last bit of confidence to accept that this sort of thing can very much be triggered through TMS. It's a bit of a mind-game, really - and, of course - it really is!!
And it's very perceptive of you - self-care has never been one of my strong points!! I'm having to work very hard at lowering my expectations of myself, if that makes sense; it comes from a lifetime of pushing along - often too hard for my own good. I'm becoming convinced that one has to work as hard on one's personality traits as on how to mentally approach one's pain in this realm of TMS.
So pleased to hear you have come through all your pain - and well done for traversing Scotland!!
Best,
David