I'm new to the site today, was diagnosed with FND symptoms and NEAD last December, also have fibromyalgia and sciatica, asthma and IBS, anxiety and depression. I am really struggling with my conditions at the moment and the reason I have finally took the steps to joining the forum in the hope of getting some support from people who understand what I'm going through. I wish I could get up just one morning with a clear head, no fog, no pain, just a feeling of a clear bright sunny day. Hope you all understand where im coming from.
Lynn
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Hi Shurdygirl, thanks for the reply. I’m not so good, although I hate moaning about it. My whole left side feels like I’ve had a stroke has been like this for 3years, some days worse than others and right eye is dropping with a migraine today. My whole body feels as if it’s been beaten up and the fatigue is horrendous. I’m hypersensitive to medication so all I have is a small dose of diazepam for seizures and spasms and paracetamol for pain. Tried all the usual drugs but the side effects and hallucinations were terrible. I use mindfulness but some days nothing works and it kinda gets you down, it’s a vicious circle. Hope I haven’t depressed you too much..... /Diegoalminez hello to you too.
Hi Lynn, I started off on this journey to FND with sciatica, I have never known pain like it, 6 weeks of hell going to chiropractor in agony, dr wouldn't help just co codamol for pain and arguments with dr for Diazepan which he wouldn't give me. Even now 2and half years on I still get the painful spasms in my back. 7 months after my mother in law paid for me to see a Nuerologist private as my dr would not send me (he just kept sending me to psychologists as he was convinced I has depression and anxiety) the nuerologist was fantastic he gave me a greater occipital nerve block to my brain to stop the pain in my head, he said the pain had been allowed to run riot and I'd ended up with FND although it took nearly 2years to get proper diagnosis from professor Edwards in London. Last year I did end up before I was diagnosed with depression and anxiety due to being just left in so much pain, seizures, unable to walk, my weight went down to under 7 stone. Like you I have sensitivity to medication and now just take magnesium and B12. I'm waiting to go into a program in gt ormond street through professor Edwards on the 27 November. This has given me hope when I had none left. I'm in a better place then last year although unable to walk far and suffer with sensory issues which is hard to socialise. My partner never gave up hope and took me everywhere he could to get answers. I'm still isolated and housebound unless he is off work to take me anywhere. Just got to wait until November for help. Wishing you luck and love on your journey 🤞😊🤗💕
Hi leesaloo, thanks for your kind words. I’ve been going through this for 7 years all in now, started with a fall downstairs and injured my coccyx, I’ve seen neurologists, rheumatologist and diagnosed with the above. The pain clinic were going to try a lidocaine infusion on me but decided because of the fierceness of side effects it was far too risky to try. Like you I’m not good at walking and wait for my husband or family who have been sooo supportive to take me out. I’m generally on top of it but at the moment my confidence is low and socially I’m hopeless. I get great support also from the homeopathic hospital in Glasgow, they are wonderful and without them I don’t know what I’d do. Just knowing that someone is out there to chat to when your low is a godsend and I’d like to thank the kind people on here for taking the time to read and reply. 💕💕💕
Hi Glad you will find the board less isolating - if you don’t have FND then people just don’t get the devastation it can cause your life. Me - loads of symptoms but main drag is daily prolonged seizures, some of which are agony and you just lie there in a seizure with no way to communicate the level of pain. And when the seizure stops I then have to deal with the paralysis. It can be anywhere from 20 minutes to hours and has been days. I usually start off head to toe paralysis and then defrost with my legs the last to come back. I have a wheelchair but its main use is for my Hubble to drag me into it aided by the kids if they are around or stop complete strangers in the street to get me off the street. But I am a distance road runner and I just say **** it - I know they come but I ain’t stopping. Bloody minded Irish woman.
Hi Louyse, sorry that’s me just replying but I’ve been having a hard time of it lately but feeling better today. Your seizures sound very painful indeed but great that you still try and live your life. I’m the same I try to get on with life but had a wobble the past 2weeks. My seizures leave me totally exhausted but with no paralysis also my bladder goes sometimes as well and I’m soaking wet, not a pleasant sight to see 🙈. I watched Dr Jon Stone webinar last night and I heard an Irish woman and straight away thought it was you! although I have never met you and only chatted here last week 🤔. Today I’m off out with old Work friends to get my hair and nails done, can’t work anymore but i still like to hear the gossip! Take care and keep those training shoes working 🏃♀️
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FND diagnosis - What now?
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