Struggling to accept FND diagnosis.

I am a 21 year old male with no prior health issues at all, I have not even really had a proper cold. 2 months ago I got a bad case of dandruff, extremely tingly and itchy. I got myself quite worked up about it, convincing myself I had psoriasis and a lot of other nasty skin conditions, because I could not find something that would make it go away (I now know that i have a type of Dermatitis). Eventually i found a shampoo that got rid of it completely!

However the tingling in my scalp persisted afterwards, and eventually i started to get this tingling in the bottom half of my body, in my legs and my feet and my groin area. this eventually spread to most of my body, coupled with tingling prickling and random pains. I started to get joint pains and muscle aches, This is when i decided to see a doctor.

Doctor told me they would do blood tests but it sounded like Anaemia or Thyroid issues. I had quite a lot of blood tests done, even one for Lyme Disease. All negative. By this time I had started to suffer quite severe heart palpitations and vision issues. One day i got a severe headache come on and my legs failed me, i was admitted to hospital for 5 days in which time i regained control of my legs. The hospital carried out a Nerve conduction study and EMG and I was told it was fine and that I had FND.

Since then I have been prescribed amitriptyline and have seen no improvement. The heart palpitations are getting quite bad and I have generla chest discomfort and achy pains there, as well as a feeling of lump in my throat and a burning sensation in my throat, as well as abdominal pains.

If I exercise, I get the symptoms amplified to the extreme, my heart goes into overdrive, my vision looks as if my eyes are vibrating because of how hard my heart is beating and I have thousands of floaters and Snowy vision. If i exercise the rest of the day is then a write off, I need to spend it lying in bed.

Is this normal with FND? I am struggling to accept that all of this is caused by FND. Has anyone had similar symptoms and have they been able to overcome it? this is really starting to change my life for the worst...

[Hidden]

I should add, I have had ECGs as well and they were totally normal.

[Hidden]

Thank you so very much for taking the time to write this for me. It is good to know I'm not alone and people have had success in overcoming parts of their issue.

[M3rry]

Some of these symptoms are common, some are unique to you. Saying that - it's exactly the same for all of us. FND is unique to each of us.

Reading your post I get the feeling you are very anxious, of the symptoms and FND. Please ask your GP about local mental health care. They cannot give you a magic cure for anxiety - but they will give you the tools for you to take control.

You state you exercise - one of the common features of FND is exhaustion for no good reason. While you learn how FND is going to affect you try changing your exercise regime. Reduce your speed/weight/time heavily (maybe down to 25%) aim to be exercising but still be able to get something done when you get home.

Many people here swear by things like Vit B12 and Vit D - see if these levels were checked.

Read the websites the7thchackra listed - they are where most of us get our information.

[Hidden in reply to M3rry]

Thank you all of this information is really helping.

[Hidden in reply to M3rry]

I also think that maybe some of these symptoms are side effects of the Amitriptyline, I've never been on drugs before so my body may be reacting differently to it. I'll speak to my GP asap. This website has been crucial in putting my mind at ease you are all wonderful.

[Chingona in reply to Hidden]

I’ve been on amnitriptyline and had very horrible mental side effects

[210272]

Some of the symptoms you describe are quite common for people with migraine, particularly vestibular migraine.

[Hidden in reply to 210272]

I'll look into it, I have mild nagging headache, kind of like there is pressure behind my eyes.

It's not particularly bad though, it comes and goes and is more nagging than consistent pain

[stripybutterfly]

Get yourself tested for Orthostatic Hypotension and POTS. Especially as you say the symptoms are worse after exercising. You will have a normal ECG with orthostatic hypotension.

My OH symptoms were put down to 'anxiety'- but a cardiologist did a simple test that showed my blood pressure was dropping too low and was causing the palpitations, pain, blurred vision, headaches, muscle weakness and fatigue.

Just because you have anxiety, doesn't mean you can't be ill!

Also, did they test your B12 and vitamin D?

Oh, and I also have raised inter- cranial pressure, which was causing headaches too.

[Hidden in reply to stripybutterfly]

Thanks, I have considered POTS certainly, though my heart rate doesn't seem to consistently rise by 30bpm on standing up every time

[Hidden in reply to stripybutterfly]

And yes I have experienced a few Doctors telling me I'm just anxious. Yes I'm anxious but it's because if the symptoms, not the other way round!

Nice to know I'm not alone in this. With your OH do you ever get a jittery feeling? Almost as if you have had 1000s red bulls ?

[Hidden in reply to Hidden]

It is important to note that PoTS and orthostatic hypotension are not the same as FND and are often overlooked by doctors. Also you could request of your GP that they run an autoimmune panel on you as many autoimmune diseases cause PoTS and some neurologists don’t look for systemic autoimmune diseases or consider EDS or PoTS. nhs.uk/conditions/ehlers-da...

The same goes for migraine which don’t always cause headaches and also often start in younger people.

[Hidden in reply to Hidden]

I have had ANA blood tests and they have come back negative. I will speak to my GP soon, I have looked into EDS as well but I don't have most of the symptoms.

[Hidden in reply to Hidden]

Okay good this sounds like you’re getting the bases covered. But do just bear in mind that ANA can be normal for some who still have autoimmune diseases so this doesn’t exclude them - it just reduces the likelihood. Also seronegative autoimmune disease can often present with neurological symptoms similar to MS well before the bloods turn positive or the more specific symptoms present.

[Hidden in reply to Hidden]

I have basically made a list of possible other things it could be according to some of the posts I have found on here, and I will be taking this to my GP and asking if something could have been missed or could have been sero-negative. I believe FND exists, but I am not accepting that as the complete story until a satisfactory amount of tests have been done. For me, just because the nerve conduction study was fine does not mean they can say I have FND.

I think they assume nothing can go wrong with someone my age.

[Hidden in reply to stripybutterfly]

and yes, my B12 and D were fine. I have been taking supplements for these anyway though as I have heard it can help

[Paddoodlz]

Unfortunately yes it is part of FND. You have to NOT do things to the extreme anymore. Doing too much of anything will make everyhing worse. It affects every part of the central nervous system. You need to try and plan a small task for each day. On a day you have a bath for example - dont do much of anything else. I know it sucks but that is the way it seems to be. Get some help in the community for physio as that does help and if you are having issues with your throat have a speech pathologist come to do a swallow test and they will give you help with everything around that. The group is here; you are not alone!

[Hidden in reply to Paddoodlz]

Thank you very much

[eviedotty]

have you been to the optician can I ask...sounds strange but the optician ordered an ambulance and got me put in hospital and ocular spasms and migraine were diagnosed from that...of course this now becomes FND but I prefer the opticians view and also the opticians ongoing care as it has nothing to do with Neurology

[Hidden in reply to eviedotty]

I'll look into it, thank you

[Hopeful40]

I also struggled accepting the FND diagnosis and can relate to what you shared. I was led to continue searching for the underlying cause for myself. From what you describe I would encourage you to be seen by a Lyme Literate Doctor for testing and guidance to rule out Tick Borne Illnesses.

I know you mentioned that you were tested for this as was I in the mainstream medical being told I did not have Lyme, that my test was negative. I was seen at three hospitals being told this. Sadly the testing in the mainstream medical is very unreliable.

youtu.be/WZ-6OavwyFE(Not working as expected?)

I did not know at that time the complexities of Lyme Disease and co-infections/ Tick Borne Illnesses. After further testing and guidance I now know that I have Lyme, Bartonella (which I would highly encourage you to be tested for with some of the symptoms you describe), RMSF, Mycoplasma as well as other infections.

Below is another link which is helpful for a better understanding about the complexities of Lyme Disease.

youtu.be/UdGeB0szaBA(Not working as expected?)

Please reach out if I can be of any help. Hope and healing can be found in many ways. Remain hopeful!

[Hidden in reply to Hopeful40]

Before my Lyme test came back my doctor gave me a round of Doxycycline as a precaution as well, and I saw no improvement. I thought I would at least see a slight improvement if not fully after this round of antibiotics if it was Lyme.

I will pursue this further as well though, and thank you, I will bear that in mind!

[Hopeful40 in reply to Hidden]

What was the length of time you were given doxycyline for?

[Hidden in reply to Hopeful40]

3 weeks

[Hidden in reply to Hopeful40]

I know that late stage Lyme wont be fully defeated by non IV antibiotics, but most people usually see a slight improvement at least

[Hopeful40 in reply to Hidden]

Sadly, with chronic/neurological lyme and the complexities one may not see slight improvement with a short term use of antibiotics. One could actually experience an increase in symptoms while taking antibiotics.

[Hidden in reply to Hopeful40]

Another Lyme test is definitely on the menu!

[AjaStar]

I don’t recommend taking drugs (medicine) since there is no drug specific for FND. Doctors still don’t know why this happens so taking anything may be causing you damage in the long run. As far as medical tests do an MRI and lumbar puncture to rule out other diseases. All you can do really is ride out the symptoms. You need to allow your body and mind to rest. Practice meditation, yoga, tai chi or just plain breathe. You have to calm down your brain, restrain yourself from physical activity and relax. Distract yourself with games or videos. You can then start cognitive behavioral therapy. They will help you figure out how to manage and deal with your symptoms. You cannot push yourself too hard physically. I know you want to be like before but your brain needs to readjust and to do that you have to let it rest. Then later when your symptoms have improved somewhat you can try physical therapy. You have to to take it one day at a time.

[Hidden in reply to AjaStar]

Okay, thank you for the advice. Unfortunately I am a mathematician by trade and I can't really "let my brain relax" when doing that so to speak!

I will start yoga I think.

[AjaStar]

I know it’s hard...I still overthink everyday and daydream a lot, but I try to stop myself if it gets to be excessive which tends to happen a lot since I can’t physically do much, all I have left is to think. Lol kinda in a catch 22

[Why88]

I started getting heart palpitations feb last year. Had all the tests done and nothing was found. Last september i had a blood curdling migraine like you described. It sounded like i had helicopter blades in my ears for 2 weeks. After that i started to get flashing lights in my vision and floaters as you described like snow..i cant go outside without sunglasses if at all if its bright. Then in april i started getting muscle twitches started lateral rectus abdominus on the left and nerve pain in my neck. It comes and goes and twitches always move. Nothings ever in the sme spot and i have blinking lights in my vision daily. I am going to see another neurologist next week. The last one i saw in august who said i had FND after doing an EMG and nerve conduction study.

[Hidden in reply to Why88]

Looks like we are very much in the same position then. Feel free to message me if you want a chat I am lucky that my father is covered by his work on private healthcare and I just found out that that includes me. I am hopefully going to try to use this to bypass the NHS waiting times and rule out for good any other issues (autoimmune conditions etc).

GOOD LUCK! we will get through this