Functional Neurological Disorder (FND) : a patient's guide
including Functional/Dissociative (non-epileptic) Seizures, Functional Movement Disorder and other functional symptoms
neurosymptoms.org
Physiotherapy / Exercise
... You will still have days when you feel as if you're "back to square one". But if you're improving slowly overall, thats the main thing ...
... Yes, activity makes the symptoms worse but no, you are not causing more damage. ...
The principles of rehabilitation in this situation are to recognise that you probably are doing a bit too much on the good days and not enough on the bad days.
Set yourself a modest task, it might be a walk to the shop, it might just be a small job in the house. Make it something that is a bit less than you would do on your best day but more than you would do on your worst.
If you stick to the SAME level of activity every day, hopefully you'll find that after a while, perhaps a few weeks, this SAME level of activity may make you just a little less tired than it did before, or cause just a little less pain.
You will still have days when you feel as if you're "back to square one". But if you're improving slowly overall, thats the main thing (see graph below)
If you have a physical limitation, for example because of weakness, pain or fatigue, it is likely that you will need to think about how you are going to improve your physical fitness and stamina.
This section may not be relevant to you if you have dissociative seizures in which case you can skip forward to the section specifically about that condition.
Patients with functional symptoms very often have fatigue, weakness or pain which is made worse by exercise.
To overcome this you will need to think about gradually increasing the amount of activity you do.
For many patients, the problem is not so much that they don't do any activity, its that the activity they do is quite cyclical. So, one day you might be feeling a bit better, you rush round doing all the jobs you couldn't do before because you were feeling so ill, but then you feel much worse again either later that day or the next day
When your symptoms get worse again, its demoralising, you feel back to square one. The graph below shows what happens.
This is all 'easier said than done'.
Physiotherapists and Occupational Therapist can often be very helpful in these situations. They are used to working with the day to day limitations that patients have regardless of their cause. They may be able to design a graded exercise program that suits your particular symptoms and help you work through it. Graded Exercise Therapy has been shown to be helpful for some people with chronic fatigue and pain. You can read some more detailed information about it here.
They may also have a critical role in helping advise employers- so for example a return to work can be phased in partnership with the employer. Read more about work related issues here
Psychologists may also be useful in helping you cope with the inevitable 'ups and downs' that go along with attempting this kind of rehabilitation
What often goes wrong is that increasing activity leads to increasing symptoms, which makes the person think that they must be making their condition worse, causing damage to their back or muscles. The important thing here is that you're not causing damage if you do it slowly. Yes, activity makes the symptoms worse, but no - you are not causing more damage.
The more activity you do, hopefully the less symptoms you will get (eventually).
For detailed consensus recommendations regarding physiotherapy for functional motor disorders click on this link which takes you to a 2014 article written by physiotherapists, neurologists, occupational therapy and neuropsychiatrists acrosss
You may wish to share this with your physiotherapist to see if it gives you both new ideas