Last year I developed a chronic sinus infection (went on for 6 months in the end) that was misdiagnosed as an ear issue solely. The stress, months of agonising pain, and the trauma of getting medical professionals to take me seriously for something so inherently minor clearly did a number on my body because I started experiencing tingling in my hands and feet that quickly spread to my entire body. It's 24/7 and just a case of where it's flaring more for me to notice every day. I occasionally get other symptoms that last a couple of days-2 weeks such as numbness (but still have sensation), headaches and my newest fun symptom going on a week now seems to be just shooting stabby pains around my body.
After months of waiting, I had my neurology appointment where they did the physical tests i've had a bunch of times before, looked over all my clear blood and mri results and told me what I'd been suspecting in the wait for the app, that it is FND.
I'm been referred for cbt therapy but i'm already in private therapy so can probably work on some things there since I started seeing someone to process what I went through last year.
Given what i'd seen in research about the stigma i was surprised for the doctor to be validating that what i'm experiencing is real etc and that FND is real but it's a case of just tricking my brain into thinking there's nothing wrong so symptoms stop etc.
It just feels a little hopeless that i just have to "put up" with things and hopefully with therapy things get better in time. It seems skeptical on recovery so any advice would be super helpful.
Thanks
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Neverlannd93
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Hi so sorry to hear what you are going through so you have been suffering like anything and now they are saying it is FND personally I think it is the easy option for the consultants to me it is frightening how many people have got FND these days to me some thing is not right I hope you ask for a second opinion and get them to do more tests and scans
They say it is all in our head we have to retrain it they tried to blame it on my upbringing I said I was very lucky my mum and dad did brilliantly with 7 kids not easy but a lot better than some then they tried to say I was billed at school when I said really what was his name and where did happen they sent me on my way how can you all of a sudden get all these symptoms and pain in the first place when I am 59 and not had any health issues till I had the Covid vaccine and they say it is all in your head
It was the diagnosis i knew was coming after neurological physicals kept coming back normal, extensive bloods, and a clear MRI on my brain and spine (which i went private for to save time). With everything so normal and the timing of traumatic events and the cross reference of ehen symtpoms started etc I feel it's probably the right diagnosis cause i just don't know what else it could be.
I just see so many horror stories of it turning out to be xyz (like seen on this forum) but how, if it truly is FND, do your recover if there's an element of accepting fnd but then also having to retrain your brain to not notice it so that symptoms hopefully go into remission?
Hi there, you have been through a lot. I try to think of it as not tricking your brain, more reinforcing positive signals. It sure in real and some medical professionals are being to realise that. They really need to put more energy and resources into rehabilitation.
Another thing that may help is trying not to focus on a certain limb thats numb perhaps but extra focus on the one that isn't. Maybe add some sensory inputs too.
Plus watch a few of the many success stories that are on Neurosymptoms.org and the like. You will notice that a lot have been dealing with an array of symptoma but nethertheless, I think you will get some good takeaways.
Thanks for your comment, honestly means the world.
My neurologist said about acknowledging it's real and was really validating and then said about the "convincing yourself you're fine" so like the brain positive signals that you said but I worry about it being a catch 22 and just tripping myself up on it. So I guess the aim is to try and carry on as normal and just not engage as much as I can really?
The tingling is the hardest cause that's the chronic and it's just everywhere in my body so i don't know how to ignore other than just push my focus outwards with it.i'm sure it's techniques my therapist will be able to help with as well as tims but just feeling a little listless.
I got a little bit of advice that may help for you off Re-Active:
"Sometimes the deep touch or pressure can be a soothing sensation for people who are feeling tingling. Also the heavy work or proprioceptive input--like pushing heavy objects."
I have other symptoms that just seem to come and go but the tingling is the constant one. I was on amitryptiline for a while for the nerve stuff but it honestly didn't do much which i guess would make sense if it is FND. Just don't feel it could be anything else at this point.
Yep, had those vitamin/kind of bloods tested many times and always came back normal. Only things that didn't were irom and vitamin d at one point and both got rectified easily.
I would be very surprised if both iron and D were low that your B12 wasn't also low. What they call normal is often low.
If I were you I would get copies of those blood results and put on the PA site for advice. The FND label is a cop out that hinders you from getting answer's for your symptoms.
Yeah I had copies of all of them. The iron & vitamin d ones came at different points last year but my b12 sat at around 300 and something. They initially thought my b12 was what was causing my symptoms. Even my physio at the time thought it might be that but then my results said otherwise.
I just honestly don't know what it could be and it just took such a fight to even get to this point that i don't know if i have it in me. All this came about by being misdiagnosed/mistreated by doctors in the first place.
I have had years of misdiagnosis but remember B12 tests are inconclusive and many Drs and consultants havn't a clue when it comes to treating. I was given folic acid which masked my deficiency so keep an open mind.
It's always been consistently in the 300s across all my tests. And everything just keeps coming back normal. Was even mentioned in my consultation over the weekend about my b12 etc.
It just felt like fnd was gonna be the answer based on what's been ruled out cause i didn't have an injury or anything that could cause the widespread tingling.
Skin test ? There is a 'lot more t diagnosing PA or a B12 deficiancy' Than a simple skin test.
I have had blood tests, various scans, a gastroscopy and a colonoscopy with biopsies and now waiting a capsule swallow ! It's been a long journey but proved I know more had FND than I had a boil on my bum !
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Newly diagnosed, confused and terrified, please help
Diagnosed with MS and FND!!
