Hello guys, I have been diagnosed fnd but I’m just curious if anyone else sometimes feel physically unwell with the symptoms ?I’ve had blood test scans and everything else but for some reason I always feel under the weather.I get pains continuously in my arms which is new and never had this before. Constantly have headaches and dizzyness but finally I have facial tics and tremors. I’m learning how to cope with this the longer I have it but I’m just wondering if anyone else has strange physical symptoms making you feel unwell. I know the cause for my fnd which is unfortunately adhd, I’ve been to doctors hospitals but they don’t seem to be any help and say there is nothing to do to help.
Thankyou for reading x
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Ellafalc12
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Hi, how long have been feeling like this? Did you have any COVID vaccines? I'm physically unwell most days since one Astra zeneca jab in 2021. Been told FND but I suspect I have pots as well so I'm pushing for a diagnosis.
Its not surprising you are feeling under the weather you have had a lot to deal with. I think you need to find joy in the little things and find ways and techniques to improve your symptoms. With the correct medical support team FND symptoms can be reduced dramatically, it can time but you will get there, I have had heard several success stories, even for those of us with no current help.
What was the rationale you were given for your FND diagnosis? and more importantly what medical professional gave you the diagnosis?
Hi, Thankyou I appreciate your help 🤍 unfortunately they didn’t put it on my records I had to search through all my records to finally even have any sort of proof of me being diagnosed with this medical condition.When i first went in the hospital they suspected it could be either brain swelling or stroke after being in the hospital for 2 days a specialist came round told me it was fnd and was realised 20 minutes after my diagnosis .I have been to the doctors multiple times and they always put it down to stress and don’t know what else to say apart from therapy I don’t have the energy to push forward and further learn about my diagnosis due to me being shutdown all the time😢I’m going to just learn other types of ways ways to cope with myself however
hi, yes I can relate. I was diagnosed in 2019 with FND had problems walking , talking and thinking . Then diagnosed Emphysema (COPD) , GORD and OA of the spine. Late last year developed tremors in my hand (functional) first thought was Parkinson’s but tests proved it was not that and has been put down to the FND. I suffer with various pains cause unknown and now my arms ache between wrist and shoulder feels like someone has grab my arms. Also very tired can sleep up to 30hrs at a time, GP are sending me for testing (suspect CFS/ME). The hardest thing is you have to learn to live with it, but if you get new symptoms get it checked. My eyes are blurry a lot of the time and one doctor put it down to FND but another sent me to a specialist and turned out I have blepharitis (what I call sticky eyes). So it’s not strange to feel unwell but always get it checked just in case it’s something and to put your mind at ease. Good luck in the future hope you feel better soon. Kevin
If you were well and not symptomatic your GP might be right, some people do manage with quite low levels (although B12 is involved with so many processes I'm not sure how they can be sure that it is not having a less clear-cut and long-term effect), but with your symptoms I would say that that was far too low to be sure that it is not playing a part. If they are testing you for CFS/ME you could ask for an active B12 test (holotc) and homocysteine and MMA (methylmalonic acid), all of which may give you helpful clues. B12 is tricky - there is no definitive test to rule out a deficiency, no agreement on what level constitutes a deficiency, testing is inaccurate and not specific, etc, etc. A serum test which you are likely to have had includes both inactive and active B12 - some people have plenty of inactive and little active so serum looks ok but they are deficient. But this is only one of several issues. Are you taking enough in (not vegan), not on medications which might affect levels (Metformin, methotrexate, PPIs like omeprazole, nitrous oxide use), other conditions or surgeries (stomach/abdomen, gastric bypass, coeliac, crohn's, other autoimmunity - your own or in the family, especially if it was pernicious anaemia, thyroid, vitiligo). I'm afraid that all of the Bs are complex, very interlinked, poorly understood and deficiencies are often misssed, never mind issues with metabolism which can be harder still to spot. If you take any B vits it masks signs and makes it all even harder. B vitamins in blood are not at all the same as B vitamins doing their job in cells. You can test privately if you have to. There are different forms of B vitamins and some do better with one than another (by quite some margin) - I found this by chance and it amazed me. Can be due to polymorphisms (epigenetic variants) presdiposing us to slower or faster enzyme function). This is fibro and ME related but interesting ncbi.nlm.nih.gov/pmc/articl...
PS not medically qualified, lots of knowledge about B vitamins due to personal experience and family history leading to extensive reading (member of Pernicious Anaemia Society), have fibro, small fibre neuropathy, vitiligo so far
No, many don't test individual B vitamins other than serum folate and serum B12. I did have an NHS B6 test through my neurologist, so it can be done, but he said that the lab would not test B2 or B1 for him.
Yes, you could try. Neuro symptoms can sometimes be caused/worsened by excess B6 although it is less common with the active form of P5P, but may also be caused or contributed to by low B6 (all the Bs work together) so neuros do like to check it, especially if you are supplementing.
Just a PS that the new NICE guidelines published yesterday say that B12 level is indeterminate up to 350 ng/l, so even by accepted and very moderate standards you have not had a deficiency ruled out. Even above that it is only stated as 'unlikely' and we know that there are a number of reasons why that can actually happen in practice.
Hi Thankyou so much for your help this has put my mind at ease my health anxiety has been the worst its ever been. I’ve been having such sharp pains in my body feels like small electric shocks down my legs my arms toes and fingers and random pain in other places if these pains do not ease I’m definitely going to get the checked out by my GP I’ve put it down to my fnd due to them starting on my right side of my body (which is my fnd side) and usually happens when I think about it but I’m still going to get it checked to make sure it isn’t anything to do with my nerves in my neck. My fnd personally is triggerd by adhd and slight traumas which unfortunately set my tick off randomly and has been a pain since then.
I wish you all the best and hope it eases for you soon, would not wish it on my worst enemy x
The crazy thing is if you expect it to happen or concentrate on a symptom its quite often feels worse. In rehabilitation at the Re-active wellness they teach you to focus on something external and use sensory inputs to take the attraction away, but every program is different and its specific to the individual. Shame they are in California.
You know, if the shocks and pain come on, try ignoring them and do something calming. You have been dealing with a lot and maybe a bit of "me time" could help you.
Hi Ella! I'm so sorry to hear all that you're going through. I was diagnosed with fnd before Christmas and have been learning to redirect my thoughts and energy away from my tremors and jerks, with the aid of fidget toys. I have an olive wood pebble that I can turn in my hand and a heavier one of two roller bars that are linked at the top and bottom. (This one does get tiring, hence the pebble!) The rollers are from Amazon and there are loads on there at a variety of price points.My daughter has adhd but chose not to be further assessed for autism. I find myself worrying about this happening to her, aswell. You have so much going on, just trying to get to grips with adhd. If you go down the road of taking meds for it, I'd just like to say that it has made a huge difference for my daughter, even if the triage was a long process and finding the correct meds and dose took a while. She now has a part-time job and is doing well.
There are so many people on here who have done so much research. It really is a great resource and everyone is very supportive. Sending hugs and positive vibes. DLTBGYD!
I agree with Kevin, anything new, get it checked out, it is not uncommon to find FND alongside other commodities (illnesses, I lean't, but not keen on the terminology personally).
They’re awful I got diagnosed at the hospital by a specialist they didn’t put it on my notes or anytning I’ve been to the doctors multiple times I am under the diagnosis for adhd which hopefully gives me more answers, sending hugs to you x
There is a lot of overblown hype about MTHFR variants/SNPs (polymorphisms) online which would make you think them responsible for all the ills of the world, which is not the case, but there is no doubt that for some of us getting the right forms and amounts of B vitamin supplements can be incredibly helpful (me included). The tricky bit is knowing which are going to help you and which might make it all much worse. Most people have variants, they are only theoretical until activated (usually by a number of triggers) and some are beneficial, some neutral and some less helpful, but in combination - one SNP does not equal one health condition. But it might be worth doing some reading and maybe testing to see how many SNPs you have that relate to the methylation/one-carbon metabolism functions and whether you can do something *very slowly and cautiously* to help support any underlying deficiencies. Diet, lifestyle and supplementation can offset any reduction of enzyme function here. You could start by asking for a serum B12 and serum folate test assuming that you aren't already supplementing, but you cannot rule out a metabolism issue with those tests alone.
I'd ask for a referral to a reputable balance clinic/headache specialist since there's plenty that can be done regarding the headaches and dizziness. Also I know the ADHD/Autism topic is on the agenda for the next FND Society meeting so I really hope the transcripts of the talks will be made available to people in this Hub. Them telling you there's nothing that can be done is so disheartening and so, so wrong.
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