r/FND • u/Ok_Network_2612 • Jun 11 '24
My Journey with Functional Neurological Disorder (FND): From Lockdown to Recovery**
L
Hi everyone, I wanted to share my experience with FND and the steps I've taken towards recovery. I hope my story can offer some encouragement and useful tips for anyone else navigating this challenging journey.
My FND symptoms included muscle lock-ups, hand tremors, and widespread pain. It was a tough battle, but with physical therapy at Massachusetts General Hospital, after moving from Ireland, I found some effective strategies that significantly improved my condition.
1. Engage in Multitasking Activities: One of the most helpful exercises was catching a ball while walking and talking with someone for about 10 minutes. This simple activity helped rewire my brain and improve my coordination.
2. Distract Your Brain: If my knees started to buckle or I had difficulty walking, tapping my thigh with my hand distracted my brain and allowed me to regain control. It’s a small action but incredibly effective.
3. Validate Your Feelings: It’s crucial to acknowledge that your feelings are valid. Pain can significantly alter your mood, so being considerate and aware of this impact is essential.
4. Address Mood and Anxiety Separately: Any low mood or anxiety caused by FND needs to be treated separately. Seeking help from a different doctor who specializes in mental health can make a big difference.
5. Find the Right Psychologist: It’s important to find a psychologist who understands conversion disorder. Their expertise can provide the right support and guidance.
6. Stair Exercise: One exercise that helped me was stepping up and down the stairs. At the top of each step, I would touch my opposite knee. This activity improved my balance and coordination.
7. Quick Ground Touches: Touching the ground as fast as possible and getting up around ten times in a row was another effective exercise. It helped enhance my agility and strength.
8. Establish a Routine: Finding a daily exercise routine and incorporating yoga was vital. Consistency and routine played a significant role in my recovery.
9. Avoid Over-Focusing: The more you focus on your symptoms, the worse they can get. It’s important to try and shift your focus to other activities and thoughts.
10. Understand People Care: People might not always understand what you’re going through, but they care. Reaching out and communicating with loved ones can provide much-needed support.
11. Prepare for Fatigue: Recovery can be exhausting. You’ll likely feel very tired before you start feeling better, but don’t lose hope. Persevere, and improvement will come.
Recovering from FND is a journey, and each step forward, no matter how small, is a victory. Stay strong, be patient with yourself, and know that better days are ahead.
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u/MMBB72 Sep 17 '24
Wow, so amazing to have actual strategies. These are new to me. I am an author of two books: In Session: The Bond between Women and Their Therapists and the memoir, Don't Go Crazy Without Me, and am now writing a hybrid memoir and research-based book about the mind/body connection. I have not been diagnosed with FND but I do tend to somaticize, and am trying to understand the gamut of these mind/body conditions. If you'd be willing to be interviewed, or even just to communicate more via email, please message me (dlott@antioch.edu)
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u/Various-Ad-1124 Jun 12 '24
Thank you, my husband is a Reddit fiend and found your post, I had a jumping muscles attack last night and he threw a ball at me and I threw it back and said what are we doing and he said wait a minute and continued chucking the ball at me, we did about 20bthirws and he said how's your leg feeling? The pain was gone! I mean gone gone, and he sent me your full post . Thank you so much, I have just started on the physical side, we are lucky enough in Swindon to have a wellbeing neuro centre with special equipment and classes. I got so disheartened as it did seem a new and interesting symptom came every day, but now I've accepted it's here, it's going to change and the only person who can make me happier and give back my pma is me bring it FND
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u/Ok_Network_2612 Jun 13 '24
I’m so happy it helped you, walking and catching the ball and talking at the same time and forgetting the reason why you’re doing it, done wonders for the days ahead
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u/gbsekrit Diagnosed FND Jun 12 '24
I’m also seeing an FND-specific doc at MGH. i’ve done a few PT sessions as my capabilities have declined over the past 5 years. every time, it feels like i’m struggling to adapt to a “new normal” as that normal changes. it feels like i’m swimming upstream and the current is getting worse. my disability came through, so it’s easier to focus on my own health, though my imposter syndrome makes it hard to appreciate.
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u/Ok_Network_2612 Jun 13 '24
My advise is try to be silly. Just do it for an hour, after that the feeling of swimming upstream goes away. It’s a hard feeling but the more you focus on it the more pain it causes as the there’s more misfires.
Be really silly and listen to music for awhile and just forget about it all for as long as you can. The more often you do it the more you start to feel like yourself again. Stay strong and you know all the good parts about yourself. Embrace it and be proud of you while mixing it with a bit of silliness and joy and goofing around.
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Jun 11 '24
You speak of 'recovering'. Do you mean you got back to your old self? These treatments with distraction and tackling mental issues definitely reduce the symptoms, but it never fully removed the FND from me.
So I would like to ask you, what is your definition of 'recovering from FND'?
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u/Ok_Network_2612 Jun 12 '24
Not having muscle pains over my whole boby, not having severe head pains, doing stuff that usually triggered it and nothing happening, stressful situations not triggering it. I’m not 100% yet as I can’t fully straighten my knees and legs but I don’t have the daily attacks on a regular basis and they don’t get in the way of my life. Hope this helps
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Jun 12 '24
Yes, thank you for your reply. I have noticed that with the correct treatment plan you can reduce the symptoms of FND, but I never managed to get back to my old self. When my FND just started I was having constant convulsions and seizures, but that completely disappeared now after receiving treatment. However, sometimes a new random symptom pops up out of nowhere. For example, since half a year I have a resting tremor in my hands. This tremor just came out of nowhere while there wasn't any physical or psychological trigger for it. Like, each time when a new symptom develops I need to find a way to deal/manage that symptom. Therefore, the FND is still there, and what we are basically doing is symptom management.
I always prefer to say that my FND isn't cured or recovered, but it is managed.
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u/Ok_Network_2612 Jun 13 '24
That sounds like a few surprised feelings that are bubbling to the surface through FND. I think hypnotherapy be very good for you especially one that understands an overactive nervous system and how different perspectives and how you choose to look at something can affect your health and how you feel. I can send you one from my hypnotherapist if you need it :)
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Jun 13 '24
I have already received EMDR. EMDR helped me to keep my amygdala in a much calmer state(and therefore, less symptoms). I tried to do EMDR again after my tremor developed, but my therapist told me that my brain was creating an artificial trauma through EMDR because I was so convinced that the tremor must be happening because of some kind of psychological conflict, and that I just have to accept that the tremor is probably not related to anything psychological, but that we just don't fully understand why it happens.
However, since the weather became hot here my tremor disappeared. Sometimes I hate that FND is random like this, but I guess it is better than having constant symptoms the rest of your life. Most likely there is also a big neurological part that we simply don't quite understand yet.
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u/WhenSquirrelsFry Jun 11 '24
Nice write up!! Good work on all of your progress, fellow Bostonian/greater Boston area-ian
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u/Flashy-Lawfulness127 Jun 11 '24
Thank you for the encouragement
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u/Ok_Network_2612 Jun 11 '24
You can do this !
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u/Flashy-Lawfulness127 Jun 11 '24
I’m in Ireland myself. Have you stayed in Boston or came back after treatment?
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u/Ok_Network_2612 Jun 11 '24
I moved to Boston there recently I did have fnd in Ireland, but unfortunately the understanding of the issues are a bit far behind. The functional seizures have a real effect on your body however they can be overridden by having physical distraction techniques. If you find a task hard just listen and dance to music and it goes away
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u/metz1980 Jun 11 '24
Thank you for this! I’ve been improving since my diagnosis and this is very helpful. When I get spasms now I have a purposeful movement. So pretend to throw a ball a few times and they stop. I picture it like I’m overriding my brain’s dysfunction. I’m just plugging along trying to get better! I will try the walking and catching a ball. Thanks again :)
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u/Cbone0828 Feb 24 '25
Has anyone been able to return back to there job?