I've been told I have fnd but that's it goodbye not how to control or help yourself and my symptoms are worse since discharge

[geordiealone]

I'd love to just get back to normal my walking is bad I swing my left leg and keep walking like I'm drunk. Speech is slurred

[starlingwatcher]

Hi Georgiealone,

Welcome to the "tribe". Keep in mind that for some people FND is a short blip in their lives, for others it's an ongoing battle. There are ranges of functioning. Maybe this is going to be something brief for you. Let's hope for that.

I've been living with FND for nearly two years now. I have dystonia in different muscle groups from my toes to my eyes. Currently I am in a flare up, but I have had many many good days, and lots of neurologically normal moments. There are so many variables that no two people will have the same experience - but some things that help are pretty universal. I'll start with those.

Relaxation is the key to having the highest quality of life with FND. I have the most vitality and freedom from symptoms the more I can consistently relax which is hard to do when you have an illness that is scary and for which there are few treatment options. There are many different relaxation techniques out there - start exploring on the internet and see what interests you: biofeedback, meditation, yoga, tai chi. Try more than one relaxation technique, you never know what might work best for you.

Good nutrition will help support your body and nervous system. I thought I ate well before I had FND, but it turns out that I had some severe deficiencies of nutrients that support good neurological health. Correcting those deficiencies has greatly improved my day to day functioning. Also, many of us FNDer's are triggered by low blood sugar - a nutritionist can help you manage this as well.

Sleep. Most of us with FND are worse if we don't get regular high quality sleep. If you are sleeping well already, then I am seriously jealous! and you need to tell me how to do it! If you are not sleeping the best, look into ways to improve your sleep.

Support and/or therapy. Ah, here is the one thing that can make a lot of us FNDer's fume. Therapy. It's because of the stigma that this is a mental illness and the cultural judgements about mental illness. Here is my take on it: living with FND is difficult and anything you can do to keep yourself optimistic and cheerful is going to improve your outcome. There is grief, anger, disbelief that comes with having a chronic illness - these emotions need to be expressed and met with understanding and ideally with someone who can guide you to acceptance and the highest level of functioning you can attain. You are going to need a few good people that can listen and help you see through the illness to a life that is not all about FND.

Now, about your swinging leg and slurred speech. One specific technique I use when my body and mind go "haywire" is to redirect my thoughts. The great thing about a brain is that a brain is not a rock. A rock is hard and not mailable, but more and more research is supporting the idea of neuroplasticity in the brain, which means you can reshape how your brain works - and quite profoundly in some cases. The basic idea is that what we do or think we reinforce in our neural pathways. So limit reinforcing your FND. I created feedback loops when I first started having symptoms that made things spiral downward. It wasn't intentional. It happened because I was scared. I would have a symptom and respond with fear which in turn made the symptom worse which in turn created more fear. And downward I would spiral. Now when I have a symptom I think of redirecting my thoughts and distracting myself from the sensations. I have a lot of tools I use to distract and redirect myself one of which is playing video games (see there is an upside to FND, you can play video games for your health!). At other times, playing a game would be way too much stimulation and make things worse, so you have to learn which tool you need for each situation. For language, you may want to play some games that work on language retrieval - games where you generate as many words as you can in a short amount of time. For example how many words beginning with A can you list in a minute. Can you list even more the next day? Daily repetition is key to retraining your brain. Learn to play an instrument, write with your other hand. Anything new will put demands on your brain to restructure itself. Minimize the time spent thinking about your leg or your speech and maximize your time learning something new. Another trick is to override unpleasant sensations with other sensations. I will run water over my hands and concentrate on the sensation of the water which is fluid. This often unlocks my stiff muscles. I use a massager to block out restless sensations I get in my arms. I use a tens unit (transcutaneous electrical nerve stimulation) to override pain signals.

Whew. this is one long letter! I wanted to make up for the information your doctors didn't give you!

I hope you will find some information in all of this that is useful for you. And keep looking for ideas to help yourself, keep educating yourself, keep trying.

Wishing you peace and health!

[geordiealone]

Hi starlingwatcher,

Thank you so much for your reply. I know how much it would have took to write it. I've learnt so much from it, as for sleep I don't know what that is. My diets not to bad and family are really good after the initial shock my partner

[geordiealone in reply to geordiealone]

Hi sorry about that finger troubles as I was saying my partner has trouble as I've been on the stroke ward several times lol I will reply properly when I'm feeling just a little Better.

Kindest regards ian

[starlingwatcher in reply to geordiealone]

Glad my note could help a bit. Stay as connected!! Community is important.

[VivienneWaterworth]

Have you checked out neurosymptoms.org and fndhope.org? These are excellent resources for FND.Also consider both you and your husband joining a Facebook support group. It will help both of you as you work towards living with this disorder.