FND prognosis

I would be interested to hear from other FND sufferers suffering primarily from sensory symptoms (numbness, prickling, crawling, heaviness etc) including tremor, fascial dystonia, and twitches what prognosis their neurologist has given them. I have been told I will definitely get better but I have not experienced that so far four months after symptoms first presented only symptoms spreading.

Thanks Olivia

9 Replies

oldestnewest
  • Hi Olivia, when I first got diagnosed I was told that it would go away eventually, all I could do was rest. Spent two weeks sleeping (like really, sleep, eat, repeat) and started to get better! Currently I have relapsed, and once again trying to rest up, and sleep has been helpful. Everyone is different though and my FND comes with serious fatigue so I don't know if this will help you. good luck

  • Hi and thanks for your reply. I wish I could sleep as much as you can when you need it. Sleep is vital and I think it's lack of it that has caused FND in me and hopefully therein lies the cure. When I got ill and became very alarmed at my symptoms, lack of sleep became chronic and that's when quite dramatic involuntary limb movements addeded to my list of symptoms. With more sleep they have become less dramatic and it's more muscle spasms than limb movements. I was extremely tired too, overtired and that stopped me sleeping too. It's ridiculous but I can't sleep if I'm overtired. I think adrenaline kicks in and I can't switch off. I definitely need wind down time before bed. I have been able to build up my stamina over the last three to four week with more sleep but I still have a lot of recoverying to do but hopefully with more sleep and relaxation and avoiding stress triggers I will get there. Hopefully we will all get there!

    Olivia x

  • Hi Oiivia,

    I have just recovered from a episode that has been my longest so far. My symptoms are all that you describe especially heaviness and weakness in my limbs with swellings and speech disturbances.

    I have taken myself away from stressful situations such as family dramas, friends issues and taken a proper period of time off work. I have spent the time at home doing things I love and sleeping a lot. It is only then that I started to feel better. I've always been the one to do so much and been proud when people comment how hardworking I am in achieving superhero status but I think the symptoms were telling my body to rest. For weeks i kept trying to do little bits of work and help friends but I think this put me back and I wasn't ready. Although I never feel stressed at the time of my symptoms appearing I have had to step back and look deeper at positive and negative influences in my life. It's so hard making changes and not slip into old habits.

    I hope now, for the future, with acceptance and establishing a new way of life for myself, I may be able to be that superhero I once was side kick.

  • Hi Jessica,

    Thanks for your reply. May I ask how long your longest episode lasted? I suspect stress has caused my problems and I've had a lot of it over the last six years, particularly the last three. I don't have family dramas other than the demands of two children but my partner's ex has a personality disorder (symptoms fit perfectly) and it's been highly stressful. Falling ill has forced me to stand back and I think I'm less stressed these days for it but now have this problem! I also work long hours and had sleep problems and had concerns about it all taking its toll on my health. Another positive apart from standing back is that whereas I was never very good at sitting down with a book, I find reading, whether it's on the train or lying on my daughter's bed (she's got a nice cosey room) a good escape for when my symptoms get me down, and I'm onto my fourth book in a month. I'm lucky if I read one a year! To help relax I have a bath of Epsom bath salts twice/three times a week although I see you can buy magnesium flakes which are more concentrated. Magnesium is a muscle relaxant and I've been told to take magnesium tablets to see if that helps with some functional dystonia I have acquired. Like you, I'm a perfectionist, I identify with the superhero, worrying about everyone else all the time. I also try to get to bed at the same time every night now. As I say, I would be interested to know how long your episodes have lasted. Thanks for taking the trouble to reply.

    Take care,

    Olivia x

  • Hi Oliva,

    Since writing this morning, my day has taken a turn. I really thought I was over this episode as I've had hardly any symptoms accept ankle swelling this week. Yet this morning I developed red stripe like lesions on my hand and arm, burning sensation in my arm and facial tingling with a slight blip in my speech today. I stutter. Gosh it is so frustrating.

    In answer to your question this is my fifth episode which has lasted 6-7 weeks. My first was February this year. I have been admitted to hospital by ambulance 3 times as it generally starts with appearance of a stroke. Facial palsy and unable to lift one or both arms with stuttered speech or not being able to talk at all.

    My previous episodes only lasted 2 weeks.

    I am waiting for some test results still from a immunologist but I think if anything else comes up it will be in conjunction with FND as the neurologist suggested.

    I was interested to hear you have found solace in reading. It is something I have found helpful and enjoyable too.

    I was very good at going to bed at the same time but haven't been as good this week so thank you for reminding me! I think I might have to pin a list of do and donts on the wall to remind myself! 😆

    All the best X

  • Hi, thanks for your reply. The more information we can share the better and the less isolated we feel. It certainly gives me strength. It's easy to feel like you are the only one with this wretched thing. I don't know if you have seen in earlier posts but I'm exploring magnesium supplements and am encouraged further by a book written by someone at Adelaide University that low levels of magnesium are common in people with functional disorders and people who present with many symptoms! I'm definitely giving it a go. It helps with sleep too.

    Sleep well!

    Olivia

  • Hi Olivia,

    I was diagnosed with Trigeminal neuralgia a year ago but then developed MS type symptoms. Had loads of investigations and eventually diagnosed with FND. Symptoms are permanant double vision, prickling, tingling in arms, numbness in hands and burning in feet, oh and pure exhaustion. You are the first person to describe some of the symptoms I have.

    I work as a Health visitor part time and struggle most days. I was also diagnosed with PTSD and treated for that. The prickling, numbness and burning did subside for over a month and was so pleased but am under excessive stress at work and symptoms have returned. I'm pretty upset as I have tried so hard to look after me and have changed my lifestyle considerably. I'm still under care of neuro and MS Nurse in case I develop MS (large lesion on my little brain). Mindfulness, pilates and yoga help me BUT I struggle with symptoms and TN pain.

    I hope this makes sense, had a couple of glasses of wine!

    Take good care and be kind to yourself,

    Debs x

  • Hi, it's always good to hear from others in the same or similar boat. You might want to do some research into the benefits of magnesium supplements. It's used for a lot of neurological conditions and some research suggests insufficient magnesium can lead to some neurological diseases. I've also read it controls excitability of nerves. When we experience high levels of stress magnesium becomes depleted and it's essential for many functions. Do some research and see what you think. I am giving it a go because it also helps relax muscles and nerves and assists with insomnia, something I suffer with and suspect is the cause or contributing factor to my woes. Let me know what you think.

    Best wishes Olivia

  • Hi Olivia

    Thanks for your advice - I'll look into magnesium. I take vit B12, Vit D3 and Omega 3 oils. I am prescribed gabapentin and amytryptaline for pain and symptoms. Stress certainly brings symptoms back and makes things worse. I now put myself first for the first time ever and have had to put needy friends at a distance. I will now do some magnesium research!

    Take care, Debs :-)

You may also like...