Why is the nocebo more powerful?

[Huckleberry]

I recall about 2 years ago trundling off to see an osteopath due to my lower back and leg pain (sciatica). I was aware of the TMS concept at this time and was quite sure my pain was somatic in nature but to be honest as I was in the grip of health anxiety at this time and because I was somatising a load of other physical symptoms the back pain was more of a back burner concern for me so to speak.

I remember saying to the osteopath before she examined me that I was sure my issue was stress, tension, emotional, somatic etc etc in nature but wanted her to give me a check over...of course gave her the full rundown of my pain locations and I probably naively expected her to tell me I was fine and to send me on my way. The examination was the usual thing, bend over and touch toes, measure leg length etc etc. Once she had finished she told me to bend forward again and whilst feeling my hips she seemed to take great pleasure and proudly declaring "yes, you do have a structural issue" she then said she could see that my hip/pelvis was either tilted or twisted and this would be placing a load on my SI joint which was clearly the result of my pain. I tried to challenge her with the usual percentage of people with similar issues who didn't have pain but she countered this in some many then wheeled out the skeleton and indicated exactly how bad my condition was. I recall asking her at the end of the consultation just how bad it could get and she said that she had seen people end up in wheelchairs due to the condition. Cheers, one massive nocebo seed planted right there!

So, fast forward to about a year ago and my first consultation with the TMS therapist based here in the UK. He had sent me a questionnaire before the consultation so he had a full picture of my mental history with health anxiety, he knew that my parents had recently died and he knew that my character traits fitted the TMS profile like a glove. When I first met the TMS therapist he explained that he was also a sports physiotherapist who still applied this traditional modality to acute injury/pain but as he had researched a dissertation in chronic pain and also due to discrepancies he was finding with chronic pain diagnosis he now applied a TMS/stress illness modality to most if not all chronic pain presentations. The therapist examined me after I had told him that the osteopath has diagnosed the pelvis and SI joint issues and he clearly stated that my back, hips and SI joint were functioning fine and in good shape for my age. He indicated that whilst he believed it was true that these things could shift to a fine degree it was illogical to think that they could generate pain. He remarked that my range of movement was A1 and that my reflex response was fine. We sat down and talked through what had been going on over the last 3 years or so and he diagnosed me with TMS.

So, two different appointments with two radically different opinions and outcomes...one overtly negative whilst the other offering almost a pretty guaranteed 'cure' if I could lose the structural fixation and more importantly I suppose lose the fear. I suppose I'm the same as most people who have been in this situation when everyday it is just like I have the two separate opinions doing battle in my head...on one shoulder I have the osteo screaming 'its structural you dummy' whilst on the other its the TMS therapist shouting 'repudiate the physical' on different days one will often win the battle but overall that nocebo of an opinion that the osteopath planted is totally winning out and controlling everything. I know I was stupid going to the osteopath in the first place as you don't go to the barber if you don't want a haircut but then again I feel I gave the TMS therapist all the evidence up front so I always feel on one level that as he is a TMS therapist well, he would diagnose TMS wouldn't he.

Anyway, apologies for waffling on. I suppose what I'm trying to work out is just why the nocebo planted by that osteopath was so powerful. She was quite a young girl and for all I know I could have been the first person she had ever seen and was just itching to diagnose 'someone' with 'something' whilst I respect and trust the TMS therapist (I still see him, he still examines me and says I am A1) its just like the opinion of the osteopath overrides everything and as a result it just feeds into the fear, anxiety and doubt. Just reading this over I can see one thing is clear and that is that the answers do have to come from within. I suppose if you have never learnt to self sooth and comfort in your life once you get too middle age and are so used to trusting people you perceive to have power and the answers it can always lead into this doubt.

Thanks for reading.

 

[Huckleberry]

Funny thing. I've not posted on the forum for while but posted a couple of times yesterday and feeling a bit down as my flare ups seem to have increased/intensified. Normally my flare ups last a couple of days but the one I am having at the moment in the worse it's even been over the last 3 years of having this...it's just keeps ramping up and is showing no sign of easing up, I've never had to go down the painkiller route but by god I feel tempted.

Whilst I am full of fear about the flare up being permanent or getting even worse I am doing my utmost to think about my circumstances and what could be contributing to this worsening. There is actually nothing I can locate so am thinking this is just the pressure cooker effect of the stresses over the last years building up.

Having said that over the last couple of days I do feel that I have moved considerably closer to accepting the TMS diagnosis on an emotional as well as an intellectual level. It just doesn't seem to make sense that I first felt the back niggle 4 years ago and it's waxed and waned since then but it just doesn't correspond to any activity level or anything. There is absolutely nothing that I could have done to re twist my pelvis or put out my SI joint since Monday but the level of pain I'm currently experiencing is far worse than anything over the last 2 years and this just doesn't seem to make any sense within a structural framework. The only real change if I'm honest is that I feel I have started to accept things as TMS far more and I'm talking to my brain and telling it that....it could almost be construed that it is upping it's game in an attempt to fight back.

One thing I've noticed is that I do tend to follow the think clean principles etc when my pain flares but on a day to day basis when it is just the tiny niggly bass line thing I suppose I get lazy and just fall into the usual thinking patterns. I'm thinking it could be that I'm making the mistake of constantly trying to put out the fire instead of not letting it start in the first place.

I did want to ask one question. I'm aware of the idea that we have in effect "learnt our pain" and that very often TMS is combined with a nervous system gone awray that is now amplifying the pain signal. I read somewhere that it is like it's learnt to ride a bike. Now, with that in mind I'm wondering that as we can never forget to learn to ride a bike is it possible that no matter what we do we can never reset the nervous system and for the amplification to stop. I suppose that now I've gone a long way to accepting that this isn't structural I'm worrying that it still may be something that cannot be eradicated.

Any thoughts and opinions gratefully received guys.

 

[Ellen]

Huckleberry,
Your post above exactly expresses the same issues, concerns, and thoughts I have had the last week. I, too, was doing pretty well for some time (80% symptom relief), but I've had a big flare up of pain and migraine. I had eased off on doing the journaling, meditation, etc everyday because I was doing well. Then the flare up hit me so quickly that I had difficulty obtaining the same degree of symptom relief with the TMS techniques that I've had when I used them with less severe flare ups. I resorted to taking medication and felt like that was a major step backward. The lesson I took away from this experience is that I have to use these TMS techniques as prevention, as much as treatment. It looks like I'm going to just have to incorporate them into my daily life.

Everytime I've had a flare up in the last 6 months it has coincided with a big change in the barometric pressure. I've researched the issue and know that the changes it exerts on the body are so small that there is no physical/structural reason for this to create pain. So I'm looking at it as a conditioned response, since I can't find that I have anything psychological going on every time the weather changes. Since I purposely stopped looking at the weather forecast so it wouldn't be a nocebo, I can only guess that my nerves are so sensitized that they feel the slight changes in barometric pressure and this sets off my pain. So like you, I have the question of how do I ever change this. I think the answer lies in creating new neural pathways based on new experiences. For example, I have had a few times where I felt some twinges due to weather changes, and using a meditation technique and talking to my brain, was able to calm those nerves and make it through a major weather change without pain. I think I need to do this over and over until the new learning becomes stronger than the old learning. I have to be persistent. Which is hard when you're not feeling well and are feeling discouraged because of a recent set back. I just don't know any other way. Perhaps others will have some insight and wisdom to share on this.

Thanks for your post. It helps to know others are struggling with the same issues. I hope you feel better soon.

 

[Walt Oleksy (RIP 2021)]

Huckleberry, that doctor who said patients with your hip problem wound up in wheelchairs ought to wind up in one herself.'

It's strange that some doctors can be so negative.

Ellen has the right approach... keep on with TMS healing techniques and keep your mind focused (as Steve Ozanich) says,
on not paying attention to the pain and do things you enjoy. You will both be pain-free soon. Just believe!