Today, in celebration of FND Awareness Day, I want to focus on my fellow FNDers. For anybody wanting more details on what FND is and how it works, here is my guest-post about FND to promote awareness.
In a nutshell, Functional Neurological Disorder is a neurological condition where stress(especially emotional stress) is expressed in very physical ways(like sudden movement, short-term paralysis, non-epileptic seizures, pain, or difficulties in thinking or information processing).
While self-care is always vital, with FND, self-care is one of the best forms of symptom management.
This post is about self-care with FND.
All people are better off if they practice good self-care – such as eating healthy, exercising regularly, recognizing and meeting their own needs, and setting healthy boundaries.
For those of us with FND, the need for self-care is magnified, as most of us have FND as a result of our bodies handling stress in a mal-adaptive way – in the form of our symptoms.
To improve our quality of life, we need to work on our own self-care, and learn better stress-management techniques, and better ways to process our life experiences.
With these improved skills, we have a much better chance of controlling our symptoms, and living a more normal, healthier life!
What follows are specific suggestions and techniques I would recommend to fellow FND patients, based on my experiences and experiences others with FND have shared.
As you read, think about which of these you currently do, and if you can add any of these to your life.
1. Be prepared for symptom shifts
Symptom shifts can and do happen. At some point in time, after dealing with FND long enough, new symptoms will develop, and old symptoms will occur less often.
This is part of how FND works.
While these shifts often disrupt many adaptations you have created for yourself, try to view them as a positive thing.
These shifts do not happen frequently, but they are a bit scary when they happen.
My first one was about 3 years after I was diagnosed.
These shifts are often the result of a change in how you handle your life stresses.
Whatever your symptom had been, it’s no longer as easy for your body to express your stress that way, and it finds a new and different form of expression.
While ideally, this change would be through feeling the emotions, it can take a few rounds of shifts to get there.
The symptom shifts can show you that the old way is harder to get through, which is why the new symptom is occurring.
These symptoms are ‘habits’ your body gets into. The more entrenched the habit, the more challenging it is to break it.
Each symptom shift is a broken habit, and the creation of a new, but less entrenched habit – which makes it easier to break.
Also, if your life stresses increase dramatically, a symptom flare is likely to occur.
This flare does not necessarily mean that you will need to deal with those symptoms permanently, as it is likely that once you have a better handle on your stresses, those symptoms will subside again.
In some cases, the flare is an increased frequency of symptoms, but sometimes it is a new entirely different symptom from the ones you previously experienced.
2. Double-check the cause of your symptoms
You do want to discuss the new symptoms with a doctor.
It is always possible that these new symptoms are not actually a symptom shift, but instead a symptom of an additional disease or condition, that may be treatable.
So after a large change in symptoms, go to the appropriate doctor(your Primary Care Physician or neurologist – or a specialist in whatever the symptoms might be), and lay out the situation.
I have done this with every major change in symptoms, and it has given me peace of mind.
For example, a few weeks after learning that my roommates were moving out, I had this feeling that something wasn’t quite right, and I started developing a headache.
I slowly realized that my eyes were slightly out of focus, which was why I had a headache.
A day or two later, I found my eyes darting around – looking every which way – even though I wasn’t consciously trying to do that. I went to the ophthalmologist.
He was already aware that I had FND as it made my regular eye exams a bit more challenging.
We would need to plan in ‘twitch breaks’ during my eye exams so I could slam around a bit between eye chart readings…and dilating my eyes was always an interesting struggle!
After he confirmed that my experience did not line up with any physical or neurological condition he was aware of, I felt much more comfortable calling it an FND symptom.
Since having FND, I have also been diagnosed with interstitial cystitis(which I later learned was incorrect), pelvic floor dysfunction(which was likely caused by my FND bladder symptoms going on for so long), and migraines(another way for the central nervous system to express stress).
The pelvic floor dysfunction diagnosis led me to find a PT who specializes in incontinence issues, and she was able to take me through bladder retraining and pelvic floor PT, which greatly helped improve my bladder control!
The migraine diagnosis led to me trying new vitamins and medications, and so now some headaches I get are gone very quickly due to the migraine medications.
3. Use the Placebo Effect
People with FND are especially sensitive to the placebo effect, which occurs when a person’s belief in a treatment impacts their symptoms in ways that the treatment itself can’t do.
If you think a treatment which has been proven to be not harmful might help, go for it!
You may be right!
If there are ‘family cures’ or ‘superstition-based suggestions’ if you think they might work – they might!
Try not to go too far down this rabbit hole, of course, and use logic – if it’s stupidly expensive, or has known negative effects, you shouldn’t do it.
But the treatments that are unproven, alternative medicines, like chiropractic treatment, acupuncture, cranial-sacral therapy, and others, have a higher chance of success with an FND patient.
Potential dangers with the placebo effect
Belief is a sword that cuts both ways.
For some of us, learning about the potential side effects of medication is the worst thing we can do, as we can end up looking for those side effects so strongly that they end up occurring.
We are more sensitive to suggestions, so being told that something won’t work, or won’t help is more likely to work against us than it would for other people.
If you are concerned about these types of effects, take action to protect yourself.
Instead of reading up on side effects yourself, have a reliable friend or family member do that reading, and keep an eye out for the symptoms.
Choose not to look too closely or deeply at the mechanisms for things that help. I am generally very opposed to behaviors like this, but knowing how this condition works, it is worth considering.
When I was first diagnosed, my neurologist urged me not to do much online research on conversion disorder due to the huge amount of misinformation out there. I trusted his judgment then, and now I am grateful I listened to his advice.
I think I would have been much more upset and stressed out if I had immediately started doing the research.
In my case, I did not go into spontaneous remission(roughly one-third of FND patients do), but I know it would have been even less likely if I had done deeper research right after being diagnosed.
Thinking back, I did have several periods of remission in my symptoms before I knew I had FND.
4. Use distraction techniques for symptom control
Another often-successful treatment/coping mechanism is utilizing distraction techniques. Because of how FND works, focusing on an activity can sometimes increase your internal pressure to succeed, which can be stressful and bring out symptoms, especially the symptoms you are most concerned about occurring.
For some people, not focusing on the activity can be very useful.
For example, I have dealt for a long time with my legs not walking properly – sometimes after a few steps, I would limp or lift my knees high, or have my knees stiffen and refuse to bend.
It would turn walking from a good form of exercise into a way to damage my body.
What I learned was that by distracting myself, I was able to go out for long walks and get the exercise I needed.
I found that if I was trying to go for a walk alone, my symptoms would quickly kick in because I had very little to focus on besides actually walking. However, if I went out for a walk with a friend, or had a good conversation by phone with a friend while walking, I was much less likely to have symptoms.
After doing that for a time, I was able to shift to interesting podcasts or music I like and had the same effect: walking with no symptoms to mess me up.
Walking in silence and alone might lead you to reflect more on the process of walking, and symptoms occurring, which makes problem much more likely.
With my mind (and subconscious) focused on other things, my subconscious wasn’t focused on affecting my walking. Though distraction techniques do not work for everything or everyone, it is a very useful way to help yourself through a lot of your daily activities and is relatively easy to experiment with. I encourage you to keep trying different kinds and degrees of distraction until you find something that works for you!
5. Practice Mindfulness and Meditation
Mindfulness practices revolve around focusing on the present moment. There are many meditations using mindfulness techniques out there, which can be quite helpful.
Often they consist of focused self-awareness(like spending 10 minutes focused on what you are physically feeling in your body), or on focusing on a single event or set of sensations(spend several minutes experiencing eating a raisin, focusing all your attention to the flavor, texture, smell, etc of the raisin).
These techniques are designed to root you in the here and now, and help minimize anxiety and fear about the future, and prevent self-destructive fixation on the past.
If possible, do some research into meditation, especially mindfulness meditation. These exercises can help you connect better with your emotions, and can be used to let symptoms come out in a somewhat controlled way.
A daily meditation practice could help you tremendously!
Experiment with types of meditation and positions in which to meditate.
While the idealized meditation position is sitting upright on the ground with legs crossed, I found meditating lying down instead of in a sitting position made a huge difference for me.
By lying down and meditating on a mattress, I avoided most risks of injury when my body or limbs started moving while meditating. It is much more important to meditate than it is to do it in a particular position.
6. If possible, do moving meditations: T’ai Chi or Yoga
If you can do them, t’ai chi and/or yoga can be useful for the same purpose.
Regular meditation can greatly help you connect better with your subconscious and relax more deeply.
T’ai chich and yoga are both physical manifestations of that mindfulness focus.
T’ai chih is meditation in movement, with you consistently moving your body very slowly through a series of positions.
Yoga is a similar process, built around the idea that the yoga positions represent constant movement, and you shift from one position to another – and each pose is intended to stretch muscles and be an effort to create balance.
If your symptoms react strongly to these treatments, it’s a sign that they can be helpful – use your best judgment to determine if or how you would like to participate.
7. Consider massage therapy
For those of us with FND, massage can help relax us physically and undo some of the tension that has built up in us.
For those of us with paralysis and/or movement symptoms, we’re likely putting unusual amounts of pressure in unusual spaces pretty regularly – so a massage might grant a fair amount of pain relief.
There is also a possibility that that physical release can grant you more emotional relief or freedom, which might help with better understanding your triggers or controlling symptoms.
Also since massage therapy is about convincing muscles to relax, it can also help you in retraining your muscles.
With FND, massages are an activity that often might bring symptoms out.
It is essential to discuss FND and symptoms with your massage therapist before they start working on you, so they know what to expect when providing your massage.
For the most part, they can handle those differences and possibly offer additional suggestions for managing symptoms in between visits.
8. Stay focused on enjoying the present
There is only so much you can do at any point in dealing with FND. Focusing on it, treatment, and getting better to the exclusion of your current life, family and friends is also not going to help you.
So in working to learn to manage your stress, one of the stresses to manage is your stress over having FND.
When you feel yourself getting anxious, pause and take a breath.
You can manage it.
Once you’ve found that next doctor or therapist or PT to go to, give yourself a break.
Make sure you are doing something you really enjoy on a daily basis. Make yourself that cup of tea, color in your coloring book, read something you like.
Whatever makes you happy, make sure you do it. If right now your usual activity isn’t an option, find an alternative that will work for you!
Finding joy in day-to-day living is an essential part of a happy well-balanced life.
Write a gratitude journal, where you record at least 3 things you are grateful for every day(be descriptive!).
Plan treats for yourself and your family – little things you can enjoy – a nice meal, a mini picnic, looking out the window, going to a nearby park – anything that will lift your spirits.
Try to find the positives in your life(there are some, really, if you look deep enough), and focus on them.
Keep yourself happy and hopeful, and you will feel better, I promise!
Conclusion: Self-care with FND
FND is a difficult condition and often can increase financial instability and other forms of household stress.
It both causes stress and is highly reactive to stress, so it is frustratingly easy to get stuck in some form of negative feedback loop.
Do your best to not fall prey to that!
Finding proper and useful treatments is a vital step in your recovery, and state of mind has a much larger effect on your health than most people acknowledge.
That trait is especially strong with FND, most likely due to it being so intertwined with emotions, trauma, and bodily response.
The happier and more hopeful you can feel, the more likely you are to be able to live a good life despite your FND symptoms.
The better care you take of yourself, the more likely you are to feel happier and more hopeful. So please, take care of yourself, and keep enjoying as much of life as you can!
I have been diagnosed with FND. I am finding my life to be very hard. I am an emotional mess and I am trying to overcome my incapacity to live a normal life. I am lying here awake at 3:00 am and don’t k own what to do. I have put some Mish stress on my husband (he says I haven’t) but I know I have. Everything I try to do something to help me physically I get exhausted and usually end up feeling sick. So I am afraid to continue. I am lost and at my wits end.
Hi Nancy, I’m so sorry that you’re struggling so badly! FND is very stress-responsive, so it may be surprisingly helpful to take some time to take some deep breaths and otherwise help yourself become calmer. I know that it can feel really overwhelming, and that’s something I struggled with myself. I’ve developed an online course to help you manage your FND symptoms and better understand the condition and have some resources mentioned on many of my posts devoted to FND. Also, feel free to email me directly(Alison@thrivingwhiledisabled.com) for more specific guidance.
FND can be managed, but I remember how hard that feels early on. I hope my suggestions in this post and elsewhere in my blog are helpful to you – you deserve to live a quality life, which is frequently challenging especially early in your FND diagnosis process.
Hi their my name is Cherl im 58 i suffer with heart disease arthritis of the spine and fibromlaga and now Fnd im luck if i get 30 minutes sleep a night as my arms and legs go into terrible spasms i used to be a dance teacher years ago and have tried meditaing and that but im also wheel chair bound now and on oxgyen 24 7 but all i want is just 1 nights sleep and then i could cope with life alot better as im always feeling very low and feeling whats the point anymore my husband is amazing and very supported but i often disturb him at night which then makes me feel real guilty as hes a diebetic as welll i just dont know what to do anymore as now im desparte i cant even sleep during day so for me its a night mare,so any advice would be truly grateful
I’m so sorry you’re having such a hard time! Sounds like you’ve got a lot on your plate and the stress doesn’t help you sleep. It sounds like you need get your nervous system out of overdrive – meditation or other relaxation techniques may help, as well as deep breathing. It’s very common for those of us with disabilities to also have sleep issues, as I discuss here: https://thrivingwhiledisabled.com/disability-and-sleep-disorders/ If you haven’t already done so, why don’t you double-check yourself in terms of sleep hygiene: https://thrivingwhiledisabled.com/sleep-hygiene-for-insomnia/ You may need chemical help(such as a sleeping pill) to help break this cycle, and it may be worth discussing that with your doctor.
The guilt and fear you’re talking about are likely making it harder for you to sleep, so do what you can to help yourself relax and break out of the stress cycle. I’ve also found that my FND often acts up when I try to relax, so I’ve learned to accept that and just allow it to happen instead of letting it upset me. Being upset or frustrated about it is kind of fanning the flames of stress, and just letting it out without being upset by it tends to smother those same flames. You may want to plan some time to lie in bed by yourself, and listen to an audio meditation or something similar, and just let your body do what it’s going to do. Don’t try to stop or control it, just let it happen. Let it happen for as long as it needs to – without negative self-talk or feelings of guilt or shame. Let the symptoms out, let your emotions out – have a good cry if you need to – but give yourself the space to release the stress and tension without any particular expectations or goals. Getting it out may set you free to reach that point of relaxation where you can sleep.
I don’t know what to do anymore. I have just been told I have FND which it’s good to know that there is something wrong but I feel like it’s been told it’s a life sentence cause I will never really be better. I had the sizers, n now between losing my eyesight off n on it scares me cause I never know when it’s going to happen. I only feel safe when I’m at home in the house or when my husband can be with me incase it’s goes again. Now I have started getting my head to start jurkin. If u can give me any advice I will really appreciate it thank u
An FND diagnosis can be scary, but one of the first things you need to do is figure out how you can get around or past that fear! I have many other posts on FND and an online course on understanding and managing it. Many people with FND do get better, some have spontaneous remission, but more often we learn how to understand and manage our symptoms and they decrease over time. You definitely can improve your understanding of and control over your symptoms. I also recommend reading my posts on befriending your condition and accepting your diagnosis because that acceptance is an extremely important process, especially with FND. I hope this helps, and feel free to comment on other posts and/or send me an email if you have more questions/concerns!
This is all new to me hearing about this FND back 2015 I fell and hit my head while I was working at Walmart got a Concussion then hearing I had a golf ball size Pituitary Adenoma brain tumor that was pushing bones away then every two years it grew back surgery after surgery then the doctor told me I can no longer drive 2019 loss all of my Peripheral vision my independence was a big thing for me. Now I have to recharge my brain to keep me going win this battle
Keep taking care of yourself! FND can and has occurred in cases of TBIs,likely as a response to the traumas involved. I’m so sorry you’ve had those struggles, and encourage you to keep figuring out how to keep yourself as independant as health allows!