I started with tingling in my fingers and lips in November 2022. It then spread to my toes. Now I have it in my legs, face, arms and top of my head together with bad muscle fatigue in my upper arms and thighs. I feel like I have nettle rash inside and if I was to hold a light bulb I would illuminate it. I was prescribed pregabalin which I'm slowly increasing but I'm not convinced it is helping. I feel frustrated and irritated because it doesn't go away and I'm struggling doing things. Normal tasks are so hard, even putting my hair in a ponytail means I have to swap arms and put them down before I can finish it. Grinding pepper hurts, reaching up to get things down hurt etc. Consultant is asking GP to refer me for CBT and neurophysio. I've joined because I feel alone and need to know that this is not some made up condition with a fancy label which really means "we haven't got a clue and it's just in your head"!
Feeling frustrated!: I started with... - Functional Neurol...
Feeling frustrated!
I started my FND journey 9 years ago with awful pins and needles throughout my body. Trying to explain to my GP that it felt like I had stinging nettles in my stomach, well he just looked at me as if I was mad.I ended up in hospital, had loads of tests which all came back negative, was told it was quite common, no explanation and put on pregabalin. I couldn't tolerate a high dose and it made me put on loads of weight. I think I took it for a couple of years and weaned myself off. I don't think it actually helped me.
Going forward to the present day, I have lots of mobility issues, fatigue and pain. I was diagnosed with Functional neurological symptoms in 2018. Last month I had a Datscan as my neuro thought I may have developed a parkinson syndrome. It came back clear.
I have to accept the diagnosis and no, you are not alone.
I hope you find something that will help you but don't give up. Take care.
Thank you Artyellow, you've described what I'm feeling to a T. But most importantly you've validated it for me, without wanting to sound soppy I could feel myself welling up when I read your response.
I know it feels like nettle rash as I was in the garden and got stung by a nettle and I immediately thought that's what it feels like inside. The other thing I can describe is my mouth and gums tingling as if Ive been to the dentist for a filling and the injection is wearing off.
Glad to hear the Parkinson's was negative as my Mum had it and I wouldn't wish it on anyone.
I have Menieres too which I've had since 2006 but having real problems with my balance at the moment (on Friday I fell into a chiller cabinet in Lidl, luckily my husband caught me otherwise I'd have ended up sitting in the coleslaw lol). I've got a balance assessment tomorrow but part of me thinks is this FND or Menieres?
You take care too.
Hi, a few possibles to consider here. Parkinson's is autoimmune and some consider Meniere's to be autoimmune too. A gluten free diet may well help, so best to make sure that you've had at least a basic coeliac check done first, then you can try GF when you wish. Personally I'd be wanting to be sure that B vitamins have been thoroughly checked which they won't have been as they never are. Serum B12 and serum folate (B9) is a good place to start but you cannot rule out a deficiency on those tests alone so don't let them tell you otherwise. As you mention that nettle feeling (which could be B vits) might be worth thinking about histamine and mast cells too. Have you had covid, or do you eat a diet particularly high in histamine, which you might be struggling to process? Cheers
Hi Bookish. They've ruled out Parkinson's and I know how that works as I cared for and lost Mum to it.
I've had about every blood test you can imagine but my B12 and Serum folate was normal. LFTs not though but got ultrasound at the end of July.
Just had a partial balance test today which came up normal albeit I fell into a Lidl chiller cabinet last Friday. But I've got another appointment for more in depth tests in August.
Not had COVID as far as I know and I've tried Serc which is a histamine for the Menieres but can't take it as it made me worse. Cinnisarine is my go to pill when I start spinning.
Not sure about the Mast Cells you mention or if I eat a diet high in histamines but I'll Google it to see.
I do have hypothyroidism which started at a similar time to all this!
If anyone else says the word normal I'll scream.
Thanks for all the info, much appreciated. 🙂
Hi, I wasn't meaning to suggest that you had Parkinson's (sorry about your Mum), just that having autoimmunes in the family makes it more likely that you have underlying autoimmunity yourself, so I would be not only checking B12 deficiency but Pernicious Anaemia and you mention hypo, so is that Hashi's, has anybody checked for antibodies? A GF diet highly recommended!
'Normal' makes me want to scream too and is totally inappropriate when it comes to blood tests as what they mean is within the reference range - not the same thing at all. In range B12 and folate means nothing, you can have a cellular deficiency with either of those at low, mid range or high in range. And with PA most have anti intrinsic factor antibodies, and high levels of those affect the assay making your serum B12 falsely 'normal' or even high, when you are deficient. Testing for B12 D is a pain in the proverbial, am currently having NHS genetic testing to try to sort mine out. With hypo you will be struggling to absorb B12 because it affects parietal cells - probably through antibodies but not always, so stomach acid and instrinsic factor affected and you find it hard to digest food and break down/metabolise essential vits and minerals - generally iron and B12 are the first to show.
First things? Get a copy of your results, if you haven't yet, and let us know the figures for the B12 and folate, ferritin, Vit D, usual basics for thyroid function. Cheers
Hi i promise you its not in your head and never let anyone allow you to think this Especially members of the medical profession, they should know better.Im on Gabapentin 900mg x3 a day and i found this does work unless im having a really bad time of it.
I find this took a couple of months of build up for me to find it of any help
FND is a horrible condition to have but we got this site for Some Reassurance and Comfort which is a blessing.
Take care
Tabe
Thank you Tabey. At the moment I'm on 75mg X2 and putting it up 25mg each week until I get to 100mg x 2. The consultant said the max is 600mg a day but people rarely get to that because of the side affects. He said if I get to 400 a day and I haven't got any benefit then there are other things to try such as amitriptyline and a few others that he reeled off. My GP put me on amitriptyline before I even got sent to A&E but that didn't do anything but I was on a low dose.
I just wish the Neurologist hadn't just passed me back to my GP (who is lovely) and he said that they wouldn't see me again as it's not their thing (my words not his but can't remember exactly how he put it). But when he writes to her I'm going to ask her where I go next. 🤞
Have you ever had a complete vitamin panel done recently? Being deficient in B12 can cause all kind of issues.
Hi Batty1
Vitamin B12 and Serum folate both in normal range, that was the first thing GP tested me for. In fact she's tested just about everything!
Chez
do u have a thyroid disorder? I have psoriatic arthritis and what described is what I have been living with for 7 years it came after my thyroidectomy prior no issues.
Yes Batty1 I have hypothyroidism and all this seemed to start at the same time 🤔
I think you might have found your issue. Hypothyroidism causes many of us to develop joint pains … its crazy and a real problem.
Magnesium has helped me (not a cure) but has helped a lot (check with your doctor first) if you consider using it.
I was taking magnesium for restless legs which was amazing as it really helped. I do have some magnesium body lotion which is good too. Stopped it for the time being as the restless legs seem to have stopped, which could be the pregabalin. I'm trying Boswellia serrata as that seems to help all sorts of things. I think I have lots of questions for my GP when she gets the letter from the consultant. I told him about the hypothyroidism and he didn't say anything about it. My levels are normal now probably as a result of the thyroxine. Who knows?
Hi Chez
I can see that you posted some results as I got an email a few days ago (manic weekend working so unable to reply, sorry) but it is not on the post now and of course I only have the first part of the message. No idea if you took it off again for some reason so won't copy what I have back here - just to say that what I said above still applies. There is no such thing as 'normal range' for bloods, it is a reference range and doesn't mean you are well on it. With your symptoms that B12 is not high enough IMO and that folate not high enough, to exclude the possibility that deficiency is having an effect on you. You really need to know if your hypo is autoimmune or not. It most probably is, and if so you could calm things down considerably with the hypo and slow/reduce the likelihood of developing further autoimmune conditions, with diet, lifestyle and supplements. Doctors commonly don't check for antibodies as they don't think the cause of the hypo makes a difference to the treatment. They are wrong. (Medichecks for example do an at home fingerprick test for thyroid and antibodies, medichecks.com/products/thy... or with vits too, medichecks.com/products/adv... . Medichecks do regular offers on their 3 thyroid tests on Thursdays, so could wait and check on Thurs which one is on offer - offers rotate). Cheers
Hi Bookish
Yeah I did post it and then deleted it. I thought I didn't really want to share such personal info. I'll try to digest what you've just said in bits as I must admit a lot went over my head lol. I've just got copy of letter from neurologist who missed off half the things I told him.
I've got a liver scan at the end of the month, those were out of range too.
My step daughter has pernicious anaemia and she's mentioned B12 injections.
I've got more in depth balance tests on 4/8. So when everything comes back I'm aiming to go see GP, as I've got sooooo many questions.
I think if I start investigating things and doing things now before test results are back, it might mask what is actually wrong. There are so many things that have my symptoms. So I think there's a lot more investigation to go at. I will not let them label me as FND.
Thanks Chez
Hi Chez, that's ok I understand. I put a lot on my profile at first then decided it was more than I was happy with.
I absolutely agree that you do not want to take especially any B vits, B12 and folate/folic (B9) in particular, as supplementing skews the results, so test first. There is a lot more to investigate yet, just you may need to be the one doing it! Took me 15 years of prescribed meds to work that out, but they gave me gabapentin for a misdiagnosed neuro problem - an underlying B vit deficiency - and that depletes B vits even more. So does pregabalin over a long period, so some versions include B12 as methylcobalamin. (If yours does, your results will already have been affected).
As long as you don't expect either neuro or GP to know anything like enough about B12 metabolism, you'll get to the bottom of it, I' m sure. My neuro agreed that he didn't know enough so sent me for genetic testing. An autoimmune diet slowed all my stuff down a lot, so if they won't check for hypo antibodies (TgAb and TPOAb) then please try to do it yourself. Meniere's is commonly grain affected (usually wheat), often improves with gluten free diet and it can be the only symptom of a gluten related disorder. If you want to ask anything else when you've had chance to have a think and get more appointments out of the way please feel free. B12 deficiency is rather complicated, so easily missed. Best wishes
You might want to get a fungal culture done, it might be Cryptococcus or a similar infection
Thanks, I have an appointment with GP at the end of the month and want her to start investigating all sorts of things. Read about Cryptococcus but can't see I present with the symptoms. Hopefully she'll start to explore a variety of options.
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