Hello to you all. My name is Jan and my lovely husband who is 58 has FND he's been very poorly for a while now. He had to give up work Dec 2016.
He suffers with chronic fatigue! Tremors, brain fog breathing difficulties which causes his voice to be weak.
He walks very slowly using a frame at home and a stick if we go out. He uses a mobility scooter as he wouldn't be able to go anywhere, if he didn't have one.
It would be great if we could talk to others and get an idea on how other cope with this debilitating disease. Many thanks
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Janandmike
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Your husband is lucky to have a supportive partner who is looking for answers
Coping is a daily challenge one that has no end in sight and it can feel really overwhelming sometimes.
When I was suffering from multiple seizures a day, I had really bad fatigue and that was the worst along with nausea. I'm pretty sure I posted my whole story on here somewhere, but basically for me I've had a lot of success with keto diet, thc/cbd oil, and exercise. I've tried some medications and nothing has worked for me. I still struggle with some symptoms but the improvement I've experienced have changed my life and I'm almost back to normal, working and driving again.
Basically it's a tough thing to deal with because there are no right answers, or really any answers.
Hang in there and I wish you both the strength to get through this together.
Well, there is good news, hopeful news and some less that positive news.
Good news:
1 You have found us! Hoorah!
2 There are a couple of websites that I can recommend, in the strongest terms. These are FNDHope.org (loads of patient-friendly stuff. Look out for posts and videos by Prof Mark Edwards and Prof Jon Stone and all the others.) The other site (required reading) is neurosymptoms.org - the creation of Prof Stone (who wrote/edited THE professionals' manual on FND). PLEASE use these to learn everything you can. It will help you understand and get Mike up and running again.
3 There are FND Hope facebook pages where you will find empathy, support, a place to howl at the moon. Just search FND in fb. Come and join us. We tread the same road, often in the same moccasins.
Hopeful news
1 Whilst FND is misunderstood (if even known about) by many (most) medical professionals, there is a lot of helpful information 'out there'. You will find yourself time and again explaining the dis-order. Note I say dis-order as FND at its basic level is a disconnect/mismanagement of signals between part of the brain (amygdula) and the CNS. Result confusion. So get wise. Do your research. The two sites listed above in particular.
2 FND comes and goes. I just had ten great 'good legs' days when I walked , without a stroller, 2,000 steps a day. Then, WHAM. Yesterday was just horrible. Brain fog. Walking by going from furniture to furniture/stroller, utter weariness. I started today with a hard fall. OK now. Just a question of restarting the body's process and swearing a bit (Mike - you are allowed to say "Oh f***")
3 CBD Oil helps ME. It has reduced my anxiety levels (over about ten weeks) has helped to reduce my seizures (when my brain cannot cope with a trauma or fall, I shuffle to the floor and kick about like a turtle on its back and lose the power of speech!) Not everyone takes to it. It is personal choice. I believe that it is legal in most places, UK, Ireland and across the USA.
Not so good
1 As I said, there is a general lack ok knowledge about the condition. FND Hope is working tirelessly to educate professionals and Joe Public alike. You can learn too.
2 There is no quick-fix pill. Medicaments treat symptoms (pain, insomnia etc) but big Pharma are not interested in a CURE as it reduces their profits.
3 Recovery is possible, sometimes it is only partial, but, bugger it, you bloody well can, Mike, if you get the right treatment (neuro-physio for mobility etc) and remain steadfast that I WILL WIN. You have deep, untapped, personal resources to call on.
Advice:
1 Research and learn
2 Relax (meditation, mindfulness, Buddhism - look for SGI UK or USA on Google - it helps. Definitely! Oddly, a soak in a hot bathvwith a handful of Epsom salts added works wonders for me.)
3 Find the right doctor/therapist. (Ask on FND Hope fb pages for recommrndations in your area.) Then get referred. With the best there is usually a waiting list.
4 Never give up hope. Do not give in. The Welsh poet Dylan Thomas wrote "Do not go gentle into that good night. Rage, rage against the dying of the light". The light is hope. Night is giving up.
OK end of sermon.
Please take care and show what IS possible, no matter how unlikely or improbable it may seem right now.
Dear Robert , thank you so much for your comments and advice. As of yet mike hasn't read this but he will do. I'm so pleased that I can talk to others who have simular difficulties. It's been a long time finally getting a diagnosis. Mike was such an independent , intelligent and conciensious man who worked very hard all through until this condition started in 2014. We're not sure how it started but we have a rough idea .
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Get moving
RE: Getting a Bungalow with FMD.
The 'f' word
Anyone had experience with getting care for FND in prison (UK)?
