Hi hope your all well. I have just been diagnosed with FND. I have had serve numbness in both feet with pain. So I can’t feel my feet. It’s al OST like in feet are in a glove. I get extremely tired and there’s fatigue all the time. It’s been just over 4 years now, this all happened when I had my first baby (post delivery).
Now since last summer I get pins and needles in both hands and have to shake my hands to get the sensation back! Any help please as I have never heard of FND. I feel lost as I don’t know anybody with my condition!! Thanks .
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Rubbs
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I have had feet pain for over a decade - though mine is almost certainly due to fibromyalgia. A few years ago I started losing sensations in my thumb, this has spread over the years to numbness that can stretch up to my armpits and when this fades the amount of sensation I get back is less than it was (though I do not get pins and needles at any point). I am also losing sensation in my feet.
I have had arguments with GPs - they're defaulting to diabetes advice to wear shoes all the time to prevent injury. Except I have found flip-flops (to Auzzies - thongs) work best for me, and unlike diabetics I do not ulcerate random, unfelt wounds. They might not stop injuries but I can see the blood immediately rather than waiting hours before taking off my socks and finding something nasty.
It's not as though wearing shoes stops the injuries on my hands...
From what I have read here and my own experience - find your own way to live with your symptoms. From talking to other people, (Note I haven't met face to face with another FND person), you will get the most understanding from those with experience with MS, fibromyalgia or ME/chronic fatigue syndrome.
I haven't really found anything. As the numbness can come on at any time - I wake up with it, it develops during the day, lasts hours or for a few minutes. I sometimes shake out my arms, that might help, but it might be me fooling myself into just thinking it helps. But if I sit on my legs - I know when I get up they should be screaming with pins and needles - they don't. I do get odd feedback sensations, just enough for me to be careful when trying to walk.
But the thing you have to check for - are your feet totally numb or just the skin? Easy to test as there are other nerves that run below the skin that detect different things. If I cannot feel my hands and have to pick up something - I use the deep pressure sensations to tell me I am holding the item - for your feet these should be able to tell you that your feet are taking your weight but they won't tell you that there's a stone in your shoe. I also get the 'ouch' when I catch a finger and fold it back too far on an edge.
I only have the skin deep thing - if it's total it might signify something to a doctor.
The biggest thing I have to worry over is water temperature. With my hands numb I cannot sense water temperature - or rather I get 'icy' for colder than skin temperature and 'scalding' for warmer. It's really odd when washing my hands under the hot tap (running water waiting for the hot to come through), but my skin does not redden or scald so I am trusting the thermostat on the hot water system to stop me cooking my hands.
Great too meet you and welcome to the rolller coaster ride known as Fnd.
Your not alone i get that feeling and to be honest the only thing that helps me when i get servre pain in my feet like that is a small dose of oramorph i know not every one likes taking drugs but i only use it as a last result but i only take 2.5mls but i hate the feeling my feet are two scared puffafish
Some times i get some one to rub or squzze my feet this helps
I also try and rest when i get the numbness in my feet but i understand this is not a easy thing.
Morning.... just wondered if you’ve had nerve conduction test on legs / feet also a spine MRI to check for any nerve compression? Only I’ve had both recently after numbness in legs and feet.....( all clear) so still FND 🙄 I had drop foot too for 6 months ... just as my FND limp started 4 years ago too....
Does it help if you roll the arch of your feet daily on a tennis ball ?
My physio suggested this to me ... it helps me a little plus stops plantar fasciitis developing .. under the arch I think .... gosh it must be so frustrating for you after all this time.
Hi rubbs. Our son is 13 now and it’s been a really struggle. Dad works nights and is carer to the both of us. I have learnt to do one job at a time and break up when you need to do things.
I also went on a mindfulness course and that helped learn to cope with the pain. But it’s not easy and you have to figure out your own plan on how to cope with your situation.
Are you by yourself with the 2 children? My husband is my Rock and I don’t know how I wouldn’t cope without him.
Support is also key, to know that your not on your own with this. We are always about and I’d be pleased just to be here if it helps?
Your lucky with your husband. I’m married but it’s not a great time between us. My husband helps with the kids thankfully. Other than that it’s a very stressful time!
Unless you have had punch biopsies to exclude it then this is most likely due to small fibre neuropathy (SFN) rather than FND.
SFN is not functional but it can be idiopathic ie cause unknown. The gold standard test is done by taking small punch biopsies of tissue near to the area of parasthesia. There is increasing evidence that SFN is being misdiagnosed as Fibromyalgia, which is considered a functional disorder. It seems it is also now being misdiagnosed as FND too.
Thank you for your reply. I had the biopsy done it showed that I don’t have small fibre neurology. Just don’t understand what else can cause this pain and numbness.
Mine were negative too 4 years ago but then I had a lip biopsy and this was 100% positive for Sjögren’s. I also had a lumbar puncture with blood test which showed matched oligloclonal bands - showing a systemic process was occurring. So my neurologist has diagnosed SFN anyway.
Apparently in the early stages it can be patchy and not show up in biopsies at first. I’m to have them redone sometime this year.
Meanwhile I have been diagnosed by my neurologist with functional overlay but I have told her I think this diagnosis is just nonsense. I’ll allow for Sjögren’s overlay and SFN - but never for FND!
Have your autoimmune antibodies been tested for Lupus, Sjögren’s etc? These often start after pregnancies and might account for severe fatigue too. As I said nerve conduction studies aren’t useful in picking up SFN. Keep looking!
A neurologist can’t actually diagnose or exclude rheumatic diseases. And less commonly the bloods can be seronegative for all rheumatic diseases, particularly Sjögren’s, RA and Psoriatic Arthritis.
I would ask for copies of your blood results and request a rheumatology referral - also check your B12 results and full thyroid panel.
Regarding pain management strategies - sometimes I have a warm bath with Epsom salts and then soak my feet, legs and hands in cool water afterwards. It seems to reboot the faulty thermostat in my nerves for me for a few hours at least. Also rubbing Vicks rub or, more expensively, Biofreeze, gives short term relief for me.
I started with the front off my left leg going numb after a disc decomposition of L5 disc and I was unable to lift my left leg straight up when lying flat and this has never returned to. Normal. Then right leg stated with pins and needles which moved on to now not being able to lift this leg as well.
Next I started with paralysis of left leg moved onto right leg then both arms.
paralysis lasts from 20mins to max of 5 hours can be just one leg or arm or all four limbs and apart from the paralysis I had no pain.
Then one day left leg went paralysed and then trying to get it to move caused me extreme pain and then pain started to happen with every limb. Now I no when leg or arm goes paralysed I will get the extreme pain in trying to get them to move.
It’s turned into a bloody nightmare but nobody has any answers so just have to accept it and try and get on with life. Worse case scenario I have paralysis but limb or limbs don’t come back and work like they do at present, I do know this has happened to a few people with FND so just take life day by day I’ve no other options.
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