FND and the placebo effect

Functional Neurological Disorder is a neurological condition, but how it works and the processes associated with it are right on the boundry between neurology and psychiatry.

While characterizing it as neurological is very helpful for those of us with the condition and for the researchers studying it, the fact remains that many aspects of FND are more influenced by psychological effects than your standard neurological condition.

One of these aspects is our sensitivity to the placebo effect.

What is the Placebo Effect

There have been books written about the placebo effect.

Generally, the placebo effect is when a person improves due to a treatment they believe will work, but the effects are beyond the ability of that treatment- the understanding being that this improvement is entirely due to the patient’s belief in the treatment.

An example I read about an FND patient was that they were given a medication which is known to take hours to become effective, but the patient, not being aware of this, felt better minutes after taking the pill.

It’s not physically possible for it to work so quickly, but the patient feels better because they anticipate the relief or really believe it works that quickly.

The placebo effect doesn’t work on everyone, but it appears to be outside of concious control and may partially be a genetic predisposition.

Researchers are still working to understand the placebo effect, but it is undoubtedly a real occurrence that some people could potentially harness to improve their quality of life.

How the placebo effect has influenced the field of medicine

Due in part to the recognition of the placebo effect, the medication testing process was revised to what are termed randomized ‘double-blind’ testing of medication.

Testing of most new medication is done in such a way that neither the patient nor the doctor knows whether the patient is receiving medication or a placebo so that the patient knows that they are getting a treatment(as opposed to being ignored or put aside) and the doctor can’t let their own bias affect how they observe the patient.

This also lets people better understand the possible side effects, as sometimes simply taking medication can make a person more aware of their bodies and unintentionally report ‘side effects’ that weren’t caused by the medication.

If you look at detailed medication information, you often will see the results of testing, which will include what symptoms were reported by both the people taking the medication and the people taking the placebo.

Also, deeper research has indicated that how doctors discuss medications with their patients may actually influence the effectiveness of the medication.

This points to another reason to select a supportive and nurturing doctor to help you manage your condition.

Managing expectations for the placebo effect

The placebo effect can have amazing and positive effects on certain conditions. The mind is amazing and powerful and can have some amazing influence on how we feel, including aspects that we do not conciously control.

There are only certain aspects of illness that can be managed this way, of course, and there are limits to what can be done.

The placebo effect can be very helpful with pain management, stress management, improving sleep quality and other aspects that the brain actively controls.

However, the placebo effect will not fix those observable issues, like tumors, physical damage that goes with injuries, or food sensitivities, allergies, or absorption issues.

The other important aspect of this is that what seems to make the placebo effect work is the ritual involved in the process – so, acknowledging that you are taking a pill, or celebrating to yourself that you are meditating, exercising, or otherwise working on making yourself healthier.

Please use this to your advantage.

Using the placebo effect with FND

There has been strong evidence gathered that people with FND are especially prone to the placebo effect.

This means that for us FNDers, there is a greater than average chance that treatments we believe will help us actually will.

The downside to this is that this also makes it easier for us to fall for pseudoscientific treatments that may only help for a limited time period, if at all.

This makes it more important to only select treatments we can afford to do, and to focus our energy on healing ourselves.

 When we believe that a medication helps, it’s more likely to, but the flipside is if we believe the medication will not help, that’s also more likely to happen.

By the same token, when we as patients learn information about our symptoms that relieves us, the symptoms often decrease, sometimes dramatically.  This is also part of why when we are under stress or in an emotional state, our symptoms are likely to be significantly worse.

The more aware and educated you are about how physical processes work, the more closely your symptoms may imitate known conditions.

My initial symptoms were large-scale muscle jerks, exaggerated shivers, and other very large very obvious symptoms.  

With time, treatment, and focus, my movements became smaller, subtler, and more likely to occur in smaller parts of the body.

I do attribute some of that to my decision early on that I was going to ‘move my symptoms out’ by shifting them away from the trunk of my body.  

This was not a fast process, but those symptom shifts did occur – to smaller joints and body parts – further from the trunk of my body – as time progressed.

My current symptoms are much more sensation-related.

There is a section of my back that sends signals similar to what you feel when a limb falls asleep.  

I have pain/numbness in my leg that might be muscular, but might not be.

As I have learned more about how the human body works, and how different muscular groups function and interact, my symptoms have, to some degree, more closely mimicked more standard medical issues.

You can use the placebo effect in your healing and symptom management by making rituals around the habits that will help you improve your quality of life.

For example, exercising in whatever ways we can, meditating, practicing mindfulness, eating healthier, taking any supplements we need, and celebrating our worthiness as human beings.

Conclusion: The Placebo effect can be especially influential for people with FND

The placebo effect is a very real occurrence, where people experience beneficial effects from treatments that are not capable in themselves of causing these effects.

Part of that recognition for medical science has been working to distinguish between the perceived effect and the medical effectiveness in most if not all, medical trials.

However, research now suggests that embracing the potential of the placebo effect offers the potential for another expansion in the effectiveness of medication.

By building rituals and habits around treatments and encouraging people to take greater control over their recovery, many patients have improved outcomes beyond what the medication alone provides.

The placebo effect occurs in most people, but people with FND as a population are especially prone to its effects.

We can and should take advantage of this by channeling our energies into improving our odds of recovery through diet, exercise, meditation, and appropriate medications and supplements.