Hi All, I have been living with FND for nearly 10 years now. I lost the feeling in one leg and then the other and slowly the numbness went up to my bladder, arms and chest. I had feeling in my face and neck and have learnt to live with not being able to walk very far and now use a wheelchair or mobility scooter to get around.
All of my symptoms have been the same, until just before Christmas my neck swelled up and my glands were very painful. The gp put this down to a viral infection but 4 weeks on I found I was losing my voice virtual every day and my glands were still coming up. I must point out at this time my blood tests showed that my platlets were higher than normal and my CRP levels were also raised. I was refereed to an ear, nose and throat specialist who put a camera up my nose to see what was happening. He found that half of my vocal cords were not moving and thus when I tried to talk they were not matching together and so no sound was coming out. He said that this was either viral, but more likely to be funcational. I was told that I needed to see a speech thepest and they would be in touch.
That was 2 weeks ago and I’ve been left with a painful neck that gets worse through the day and most of the time I have no voice. Does anyone else have this as part of there FND? I’m told that this is common in the condition, but I’ve not seen many of here with it?
Sorry for the long message, really do feel allow and left with nothing more again then “oh well it’s funcational”!
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lorettapalmer
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Hi Loretta, I'm so very sorry you are going through all of this.
I have alot of the symptoms you have but haven't had the blood tests, nor the other tests. I did see someone who put a tube down my throat and gave me Gaviscon!!! The glands in my throat swell up, and my jaw tightens, and every day at some point I cannot talk for ages.... which of cause makes me reach for the water again, and I've just learned that we can drink too much water.
I have FND, NEAD, Fibromyalgia, Epilepsy and Asthma so a fair range here so keep me going. A lot of the illnesses have similar symptoms/side effects and I was told that FND was like an umbrella over the lot of them. I've learned more here.
I'm sorry I can't be of more help but please contact me anytime
Thanks for your reply. It’s good to hear I’m not alone. Do you mind me asking how long you have been like this? It just seems that the moment you mention anything funcational the consultant has an easy way out to put you on another list and say well it’s all under the same umbrella - live with it!
As you say, the more I drink the more pain I’m in with my throat and then I don’t want to drink anything again because of the pain. It’s a never ending story.
Trying to work with this is a nightmare, as I can’t answer the phone or speak to people without them going “oh you should be in bed love, you sound terrible!”
Do you work? I’m Hr and worried sick that my employer is going to say I cannot do half of my job!
Speak soon, and thanks again for replying , it’s a very lonely world without the internet.
I have had Epilepsy since the age of 14 (anyway), diagnosed with NEAD September 2019 (just before lockdown), Chronic Fibromyalgia in 2009 (6 months after I got married again), Asthma approx 15-20 yrs ago and FND was actually named FND last September, though it was simply called a Somataform Disorder approx 10 years ago?
I'm a little upset just now because there are others on the site who have just received an email today saying they should shield because FND is now recognised as a rare brain disorder with complications - or something like that. I didn't receive one but checked with my health centre, who told me that because I'm in Scotland I should check on NHS inform and look on there. There is no mention of NEAD or FND!!!! Disgusting!!!!
Anyway, No I do not work. I was medically retired at the age of 33. I used to work, at that time, with a Council who could not keep me on because the seizures were so bad and I had too much time off work. They did me a favour actually.
Know how your feeling, as I’ve had colleagues at work say to me shouldn’t I be shielding for months now. I work in retail so worked throughout lockdown. The first thing I knew about the change was when I received an invite fir the vacation, getting mine done tomorrow. No shielding letter has arrived, but I’ve worked through the lockdown, and with now getting the vacation will make it better.That’s the one thing I’m worried about work, as if this voice thing continues hope they don’t say that they don’t want me any more. Just seen Moniren’s message about her vocal cords- actually what mine are like ☹️Xx
Hi Loretta, I'm glad you're getting your vaccination. No idea when I'm getting mine as I have had no letter either. Re the emails most people here have had, I haven't had one either and was told to look on the NHS Inform website for information. There is no information there about NEAD or FND!!! Maddening!! Still, I'll get it at some point I know. My vocal chords are the same....what do you work at loretta? If you had to leave, maybe they could pension you off, like I was? xx
It was weird reading about your numbness, I've been numb on the left side for years, always thought it came from my back, but last year neurosurgeon said no, my leg the worst, but I don't carry anything in my left hand. I regularly lost my voice for years while my children growing up. Specialist said it was depression, vocal cords separate, no sound. So every year , no voice for 6-8 weeks, it's amazing how people talk loudly and slowly when you can't talk. Never linked this to FND, diagnosed a couple of years ago. I'm from regional Australia. Do you hear the accent? 😆
Very interested about your vocal cords, do you still get this every year? They looked at mine and said one wasn’t moving thus thought it was funcational straight away ☹️
I’m in the uk, do Australians get looked after differently? Do you have to pay for your healthcare? I may have to look at speech therapy and pay if it’s too long await. Thanks again for telling me about you, makes me feel I’m not alone.
With my vocal cords, they said it's the same when you are crying, it's hard to get sound out., but that's me, not the same for everyone, funny, now that I think of it, since diagnosis, I haven't lost my voice. Speech therapist didn't think she could help me. Here in Australia, we don't have to pay for most services, just wait longer, paying helps jump the queue. I'm on disability pension, so can't afford to pay, I have a few health problems, like most. Just being in regional area, services are limited. Neurologist wanted me to have FND rehab, but it's not available here. We have a great gp, she does everything to keep costs down while still having high health care. Can't believe how expensive other countries are. All the best.
Hi Moniren, I can really hear your accent... it's great. My brother lives in Perth though he isn't Australian. I love all those Aussie Gold Hunters, Aussie Opal Hunters etc - just to let you know. I'm now hooked on the Married in First Sight Australia 😁. That problem you mention about losing your voice due to depression - in my opinion - is a load of nonsense, because I don't suffer with depression and have the same voice problem. There are days when I can't read, or read upside down, or can't read numbers or just certain numbers, it could be colours, or maybe I can't write. This could last a few hours or a few weeks at the longest. Hope you're having a sunshiney day. xx
As you both say, I think they put it under funcational just to give us something to work on. I’ve just had my jab and it was very organised. Felt very privileged to be getting it and have a date for the second one. Hope you both have a good day and thanks again for letting me know about your voices xx
They probably used ' depression ' like they use FND now. An excuse for I don't know, and when you are going through different symptoms it's hard to make sense of anything.
my daughters syntoms are very different from yours, but what is similar is this viral origin. For her it started with a flu that never went away. because of this we started with detox diet. she drinks celery juice in the morning, we cut gluten and processed food, dairy and eggs and included some things like wild blueberry ( in a smooth that I allways make in a different way, the base is blueberry and banana but I vary the rest of the ingredients, like kale, spinach, orange apple...) cats claw, and other supplement i found researching her syntoms. Now, this is not from a scientific source, but from a person that calls himself medical medium. But the so called science didn’t offer an explanation nor a plan, so I went with my gut, and I can’t describe how much this helped. It is not a miracle, it is not overnight, and it is not the only thing we did so it is hard to quantify how much it actually helped, but it did. my daughter went from bed bound, to walking with a walker and this week she switched to crutches.
I know I need to do something drastic about my diet, like smoothies etc but my husband is the one in the kitchen since I can't stand up longer than a few minutes because of my back. He's still trying to get used to be on a diet and eating veg! I drink gallons of liquid a day, mainly water - he'll drink about 2" of water in the morning to take his pills and still have some left over!
I am so happy your daughter's health seems to be improving, cspin, keep believing.
I lost my voice for a year 15 years ago now. Back then I hadn’t been diagnosed with FND & I had problems as a teenager post a glandular fever type virus. This seems to be the stem of my problems. I saw a speech therapist in my teens and she said then this isn’t how you talk it’s something else. When I lost my voice for the year camera down throat told nothing wrong with me so speech therapist (different one this time) she was insistent it was how I talked and no matter what I whispered she wouldn’t believe me when I said I thought all stemmed back to virus I had, until one day voice suddenly reappeared she couldn’t believe it at my next appointment and was well I’ve not seen that before you must be right. I regularly get sore throats and neck swells when I get colds or run down but voice has been pretty good. My mobility is my main problem now especially my left side so sounds like my body is doing it the other way around to yours.
I hope you get help and sorted soon. Hopefully in the 15 years since my lost voice experience the way they can help has improved with new techniques. Big hugs 🤗
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