Q and A
HOW DO I EXPLAIN IT?
It may feel almost impossible, to sum up, the physical and emotional pain you have been through, let alone explain something even doctors don’t fully understand. First thing is to realize, you do not owe an explanation to everyone that walks by nor every one that asks. Do know that people ask questions for various reasons.
Those that care- They ask because they care.
Professionals- They may be an employer, professionals providing services, other doctors non-related to the illness (dentist) or someone that needs to know in case of emergency.
The short version- They possibly know of someone in a similar situation, and they are trying to see if you have information that could be helpful to them.
The shorter version- Being polite- They are not looking for any great detail.
The shortest version- People are sometimes nosey.
Those that care- You may feel more comfortable with friends and family divulging your thoughts, feelings, and frustrations. However, know that you are under no obligation to do so unless you are willing and ready. It’s ok to tell them you are still trying to wrap your head around things, learn more yourself and would love to talk to them when you are more ready.
Professionals- Some specific information may be more necessary for employers or other health care professionals, etc. If you need to rest often, then your employer would need to know and address any concerns either of you may have. If you have involuntary movements your dentist will need to know, so he/she can use extra precautions while working on you. Also, Chiropractor, Acupuncturist, and Massage Therapist would need to know if you have trigger points that affect your movements and/or tremors and explain how you would like them to handle you if you do, ie. leave you be, call someone, etc. When making these appointments you may mention your situation. You both may need to allow for extra time in case of flare-ups.
The short version- “I have a neurological movement disorder. It is when the brain does not send and receive messages accurately. There is little known or even understood about this (submit diagnosis if you would like) disorder. It has been under-researched for many years but is finally getting the attention it deserves. I am grateful as researchers around the world are doing their best to find answers. I am hopeful they will then have better treatment plans.”
The shorter version- “I have a neurological movement disorder. It is when the brain does not send and receive messages accurately.”
The shortest version- “I have a neurological movement disorder” or you can always go with
“Scientists around the globe are searching for answers as we speak. I just hope it is not a contagious airborne virus! ” then proceed with a little cough or sneeze in their direction.
Is misdiagnosis a possibility?
Yes, misdiagnosis is a probability with all illnesses. It is important functional diagnoses derive from positive signs, not negative test results. It is also imperative not all symptoms are labeled functional and assumptions are not made that functional symptoms are not co-existing or the result of organic illness.
Is Conversion Disorder the same as Functional Neurological Disorder?
Yes and No
Yes, both are listed as the same illness in the APA diagnostic manual known as the DSM-5 and both are typically used interchangeably with one another.
No, Conversion Disorder [CD] and Functional Neurological Disorder [FND] are theoretically different concepts. CD is the theory that symptoms are the result of suppressed psychological trauma converting to physical symptoms. Studies have found many do not have a history of major emotional traumatic events, or major depression/anxiety. Even if a patient does have mental health issues, now or in their past, there is no quantifiable way to confirm a correlation to symptoms. The change in criterion now makes it easier for physicians to use the CD/FND diagnosis, where in the past they couldn’t when they found their patient did not meet the criterion standard and there was no “converting” of symptoms taking place. Because there is sometimes no identifiable mental health issues, the need to identify one was removed. However, there are some patients who do identify with the Conversion Disorder theory.
We advocate that patients receive respectable and equal care based on their needs.
What are the treatment options besides CBT?
Physical/Physiotherapy specific to FND has been shown to have the greatest results. Also, patients find grounding techniques and meditation to be helpful. This is sometimes achieved through biofeedback. Biofeedback teaches you how to turn down over excited senses, which may be making symptoms worse.
Is there a window of opportunity for best results?
Yes, the sooner a patient can receive treatment the better. Many patients see improved results in movement soon after receiving proper physical/physiotherapy training. The goal is to retrain the brain, and not let atypical movement become a “habitual”or a relearned way to move.
Should I push through symptoms?
It is recommended that patients get out of the “boom and bust” pattern. The goal should be aimed at becoming balanced. Separating your physical, social, and cognitive activities and then micro balancing the time you spend doing activities in each of the day to day activities is a vital part in improving symptoms.
What if I had an organic illness diagnosed then received an FND diagnosis?
It is not uncommon for patients to have functional symptoms in conjunction with other illness.
Which should be treated if I have both?
Doctors should always err on the side of medical caution. An FND diagnosis should never take precedence over a diagnosed organic illness, and most certainly should not impede treatment for a known illness at any time.
Is FND genetic?
There are not any standard research papers confirming or denying a genetic link. It is likely, that it is genetic for some, but is by no means going to be genetic just because it has in the past or because you now have FND. They know so little about Functional symptoms and what they have thought in the past caused FND (suppressed trauma) wouldn’t necessarily be passed down. New researchers are starting to acknowledge a pattern some families are seeing and looking into more genetic links. Please note genetic or not does not lend any weight on whether or not the illness has a psychological component or not –many mental health illnesses are genetic.
The following illnesses have been identified within our members as often misdiagnosed or co-morbid with FND?
Vitamin B-12 & Vitamin D
These vitamins should be tested as standard patient care. Patients experiencing neurological symptoms should receive therapeutic doses of B-12 until symptoms are no longer responsive and/or test result is below 550.
Ehlers Danlos Syndrome
Vascular Disorders such as POTS
Neuro Vascular Disorders such as Sneddon’s Syndrome (signs of Raynauds and Livedo Reticularis)
How will I know when something is FND and not something else?
Over time you will learn what is normal for your body. Finding a balance is a very common struggle for everyone involved. On the one hand there are those (patients, caregivers and doctors) that suggest everything is FND/CD and never have issues properly looked at, then there are those that rush to the E.R. with every new or altered symptom. You may consider discussing with those around you when to take you to hospital and what to watch out for. In the end this will have to be your decision, but ‘when in doubt check it out’.
Do I need to be on medication?
This is why you need a specific doctor to coordinate your ongoing care and monitor medications. This could be your Primary Caregiver working with a Neurologist and Psychologist. As a team, the goal should be to take the least amount of prescription drugs as possible to relieve symptoms. With every medication comes a list of side effects. If a medication is not helping significantly then discuss discontinuing it. NEVER start or stop a medication without a doctors’ supervision. Many medications are just as harmful coming off as they are starting. Always use caution and check for drug interactions with over-the-counter medicines and natural herbs and supplements. If a new symptom does develop always look into medication to be a possible catalyst.
Can I ever get completely better from this condition, or will I just go in and out of remission?
Most do not get completely cured. However, many can get better by physical and cognitive management.
What if my doctor is not supportive or is indifferent towards me?
Ask your doctor specifically if they are willing to provide you with medical care. You may be misreading their indifference towards you. It could simply stem from frustration with their own lack of understanding and knowledge about this disorder. If your doctor will not provide you with medical care, then move on. Ask them where they would suggest you establish a central location to handle your medications and care. They will more than likely suggest a psychologist. Do remind them that, because of the physical symptoms, you will also need a doctor that understands the condition and can help you navigate your way through dealing with that aspect as well.
Why does my doctor insist on sending me to a psychologist when I don’t feel I need one?
This is probably one of the most confusing aspects of this disorder. Some sort of therapy is part of the standard treatment plan regardless of which doctor you see. The key issue is the absence of pathophysiological understanding of this disorder. Your doctor is trying to use the tools available for these types of disorder. Who knows what will work best for you, and it is best to leave no stone unturned. You owe it to yourself to give it a fair shot. The most common treatment that is offered is Cognitive Behavioral Therapy, which some people have found to be helpful. Whether it does improve your physical symptoms or not, CBT may help you find ways to cope with the symptoms and with some of the new challenges you may face. You may be one of the 13%¹ that does benefit. However, do not feel discouraged if you give it your all, but are not cured or see little improvement in your physical symptoms. Your new coping tools can be very helpful.
I keep asking my doctor questions, but Why can’t I get answers?
Little is known or understood about this disorder. In a desire to get to the bottom of things or to try and wrap your mind around this diagnosis many questions may come to mind. Try not to feel frustrated. Write down all your questions, and be ready to discuss or leave with your doctor at your next appointment. Keep in mind, if your physician can not answer some of your questions it is not necessarily because he doesn’t want to, he can’t give information he doesn’t have. Also, occasionally doctors are not sure how to explain a functional diagnosis or are uncomfortable having the conversation. By your next visit you may find you know more than him. You have a right to medical care by a doctor who understands your condition. You also have a right to respectable collaboration with your doctor on your best options for treatment.
Good question. That is what research teams across the world are trying to figure out. Why does this affect some people and not others? Rest assured, when they do figure it out, it will be immediately posted on this website.
Am I depressed?
Many find themselves saying: “I wasn’t depressed until now.” It is ok to admit you are feeling down or even depressed. You may feel as though the rug was pulled out from under your feet. Let yourself feel whatever it is you are feeling. Allow yourself time to grieve, maybe feel a little sorry for yourself if need be, but be careful not to get stuck in this phase, it can be a quick and downward spiral. No one wants to be in this situation. If depression is setting in, and you have tried everything in your power to overcome it, then discuss with your doctor if there is anything they can suggest to help you. If you are already on medication, then consider if the medication is causing the depression. If this feels like the case, then discuss with your physician if you can try another kind of medication. This is also where therapy such as Cognitive Behavioral Therapy can be beneficial to help you cope.
It is also ok to speak up and say if you are not depressed. Sad or upset maybe, but if you do not feel depressed then do not let anyone convince you otherwise. As long as you are feeling other ranges of emotion then trust yourself to know and recognize your emotions.
Will I ever find anybody who understands how I feel?
Many find talking about their FND/CD with others who are facing similar problems can be very helpful. In that case, support Group Pages could be very beneficial.
I would love to get back into life, but how?
Slowly and carefully. It is likely you will never go back to your “old” life to its entirety. For one reason or another your body is responding to illness. That is not to say that a “new” normal will not be as meaningful. Now is a great time to evaluate your priorities. Make more time for the people and things you love and less for the things that don’t meet that criteria. You may find doing things you loved before may now be difficult. Perhaps some modifications or finding a new hobby may be the answer. Try crocheting hats and gloves for children in need, which could be very rewarding or taking up yoga, which will help you gain strength and balance. Many things are possible and a new passion is out there waiting for you.
When can I get back to work?
That is a question to discuss with your physician and your employer. Safety should always be of the utmost consideration. Some find that because the brain is not sending and receiving messages like it once did that some changes maybe needed. It may be that your old job is just not conducive to your new situation or it may be that a more flexible schedule or an environment with less sensory overload will be more manageable. For some people, working is not an option until they find ways or treatment to manage the disorder. This is a decision to be carefully weighed because the overall goal is to get back into normal healthy living as soon as you can, if you can.
Can I drive?
You are responsible for what happens when you are behind the wheel. This is something you must discuss with your physician and others in your home. The laws vary in each country and you are responsible to obey the laws of the land where you reside. Be advised that you may be required to report some symptoms, i.e. seizures, to your insurance company. Regardless, it is your responsibility to be honest with yourself if you are well enough to operate a vehicle. The safety of yourself and others should never be compromised.
Do what is best for you. Be empowered to take control of your health and your healthcare.