FND - Page 3 — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

FND

13»

Comments

  • Susan46
    Susan46 Community member Posts: 16 Connected
    You need support. Your family are first port of call and regardless if you're in the menopause, those who care will understand when you tell them. Menopsuse is completely different and anyone clued up on menopause and its symptoms will know what you're presenting is not from that. 
    Many of the symptoms look fake. How can you be fine one minute and not the next but we who have fnd know that it's not fake,,,,its definitely real!
    I'm from the North east. I was going through a period of total hell with fnd and neck issues and my Dr's hadn't even heard of fnd so offered no help at all. I was in such a state with chronic pain and the whole load of serious symptoms that I wrote to a neurology dept in Sheffield just begging someone to listen as I was desperate. I never expected a reply but I did. The neuro said I should show my then gp his reply. He said I should be considered for in patient treatment as in his opinion I needed it. My gp came back with we dont have the funds. Theres 1000s of us suffering.its not just those with fnd,,,,,,its the partners and children who suffer too. If we can't get our heads around it then how can they understand it?
    You need to tell your family. dont go through this alone. If people don't accept fnd then their choice not to be involved but they need to stay away. The stress of anything exaggerates the symptoms and it doesnt get easier for most of us although apparently if you get the help in first six months you can maybe get bits of normality back.
    Just remember that there's already two of us on this site with fnd and I for one am there if you need to talk or ask for advice. Our bodies are different, our symptoms maybe similar or different in  levels, frequency of symptoms and amount. Just because I get high level of pain, chronic exhaustion memory loss and NEAD etc doesnt mean you will. I've got 20 plus symptoms most are there 24/7 and rarely get any relief from them. I cope. I cope because I've got two people who've understood me from day 1. 
    Need to vent, vent.
    Need to cry, cry.
    Don't wear a smile to cover your pain, let it out. Stress is a huge factor and trying to get through it alone just creates a lot more inner stress that fnd brain twists and twists until it comes out as a symptom. I'm sure your family will understand and give you the support you need. However, ask yourself how you would feel if shoe was on the other foot and you were left in the dark about it. 
    My son just said today that he never realised how bad I was. He said he knew I had a lot of bad symptoms but he didn't know to what extent and how much they affect me until he came to live with us. Luckily we can laugh together about all the mistakes I do. Find a hobby you can do. I dont have strength in limbs and with right side weakness its hard to knit or paint or do much at all for me. I love jigsaws and writing, reading books but unfortunately I can't do. Either memory, concentration or weakness has taken all those hobbies away from me.ive no concentration anymore. TV I can watch emmerdale or corrie but I have no interest in anything else. Films,,,,,due to my memory I could have watched a film 10 times in the past but would not remember doing so. It leads for a very interesting life lol.



  • diane01
    diane01 Community member Posts: 45 Connected
    I can relate to memory loss i forget the days everyday is like a sunday i do very little manage one tiny job a day haven't been outside proper for months panic mode takes over & body shakes to really bad limits i think with it being early days i just feel its to much for my kids to take on board because my lad doing his GCSEs & i dont want to worry as need him focus on them & ano my daughter at 14 will be much more understanding but she'l also be fretting too & she'l have loads of questions that i'm unable to answer but u've give me some valuable ideas on getting thru the day a bit more i'l have to find that one hobby that doesn't involve a lot of energy or concentration aha.
    Not like i'm good at much but u mentioned painting & i guess i do like to draw so i'l take that up again not dont it since having my kids or maybe colouring eventho i'l feel like a kid again but ways of just passing the time & not getting board 
    .. 
  • deb74
    deb74 Community member Posts: 814 Pioneering
    Hi @diane01. I have just started diamond painting. I know quite a few of us on this site do it. It doesn't take any of your energy and you can just lose yourself in it for hours. I also have fibro and i also have ME. I know how hard things can get but you just have to take it one day at a time
  • nix91
    nix91 Community member Posts: 1 Listener
    Hi everyone. I’ve just turned 30 and was diagnosed with FND a few days ago. I’ve had tremors for 6 years and they’ve gradually got worse. I find the tremors are particularly intense when im anxious or hungry. 
    I have pernicious anemia too so I have always thought my “foggy head” was due to this. 
    Been on anti depressants for 9 years (150mg Sertraline) and the neurologist has advised me not to come off them yet as he thinks it’ll make my symptoms worse.
    Just looking for any tips or advice? Feel like my body is double my age and worried I’m going to just get worse and worse 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,491 Disability Gamechanger
    Thanks for joining and sharing your experience @nix91 :) Perhaps you and @diane01 could connect? 
    National Campaigns Officer, she/her

    Check out our Playground Accessibility Map
  • faeloh88
    faeloh88 Community member Posts: 1 Listener
    Hi all. I recently came across this forum and have had very similar symptoms to some of those mentioned. It progressed over 2 years but I’ve had symptoms throughout my twenties. It started with a tremor, numbness in my left foot, which spread to my leg and arm, and even to the right side. I was uncoordinated, brain fog, with a poor memory. I then started to get pain in my shoulders and struggled to lift my arms. After numerous clear MRI’s, it was going down the route of FND. Then I was chatting to a family friend who was once a homeopath. On hearing my symptoms she mentioned magnesium deficiency. 7 in 10 women have it but it was never mentioned by any doctor or neurologist. Since starting magnesium glycinate tablets a week ago, the improvement in my symptoms feel like a miracle. I can wake easier, my shoulders don’t hurt, all numbness and nerve symptoms have gone, my concentration is back to normal. There are still some symptoms but I’m hoping improvement continues. As only 1% of magnesium is in the blood, deficiency often doesn’t show in blood tests. It might not be the case for all but posting this in case it can help anyone. 
  • chiarieds
    chiarieds Community member Posts: 16,088 Disability Gamechanger
    edited January 2022
    Hi @faeloh88 - & welcome to the community. I must admit that I am in complete agreement with advice given on our NHS website which says, 'The National Institute for Health and Care Excellence (NICE), which advises the NHS on the use of treatments, doesn't recommend using homeopathy in the treatment of any health condition.' This because no clear evidence has been found that it is effective. They certainly cannot know you have magnesium deficiency.
    I'm pleased you've had such a 'miracle cure' after taking magnesium glycinate for just a week, but magnesium supplementation should not be started without a Dr diagnosing magnesium deficiency (there are other ways to diagnose this other than blood tests).
    Of concern is the fact that not only can frequent doses of magnesium glycinate (& other dietary magnesium supplements) result in some unwanted side effects, they can adversely affect some prescribed medication. So, see your GP/specialist first.
    Magnesium that naturally occurs in foods isn't harmful, & doesn't have to be limited. So, a person could try to ensure including the following foods in their diet:
    - Legumes (e.g. peas, beans, lentils)
    - Nuts & seeds (e.g. almonds, cashews, peanuts, quinoa, sesame, pumpkin, flax & sunflower seeds)
    - Leafy greens (e.g. spinach, Swiss chard)
    - Fruit (e.g. avocado, bananas, dried figs)
    - Wholegrain brown rice, fortified breakfast cereals
    - Mackerel
  • Careyon
    Careyon Community member Posts: 4 Listener
    Susan46 said:
    hi
    i was diagnosed with FND a month ago. previous to that in april i was
     diagnosed with degenerative disc disease with bulging discs c2 to c7. every time i went to gp he gave me painkillers. i too have tremors, involuntary shakes and spasms, my headaches, neck pain, shoulder pain, back pain, ear pain, short term memory loss, confusion and my arms and legs not working properly, my speech issues....i asked my partner if im going crazy. i was taken into hospital due to severe neck pain and agonising pressure in the head. it was only then did drs actually see what i was having to live like. mri and ct scan showed everything in head ok. after months of waiting i saw a neurologist who diagnosed FND. so i was relieved i wasnt dying or going crazy. 
    FND is a specialist subject sO only medical staff who know about FND should help. im going to start FND physio soon and am on a waiting list for seeing neuropyschologist . FND is when the brain sends and receives messages but doesnt react correctly. all the symptoms are REAL. i had physio sorted but the neurolost cancelled it as FND needs different physio as ordinary treatment could make the problems worse. i will see a neurophyschologist to retrain my brain to think different and hopefully in time i will get better. since march 4th i have been this way and i now use wheelchair to go out with partner pushing me and in the home i have zimmer, comode, shower stool which is a godsend. both bladder and bowel are incontinant since this started and i get exhausted after 5 metres of walking. as soon as i stand im on a rocky boat and even when i sit this happens virtually every day. i cant cook because i have little strength in arms and hands and cant judge distance when going to pick something up. the neurologist aked me what i hope will happen with treatment. i said....as long as i can walk and speak again and stop the depression setting in then that would be great. yep, the tears and the cant do anything mood has set in and im sad a lot cos i feel ive been put to the back of the queue with nhs and ive had to fight every bit of the way to get anything done. im now struggling with sugar levels and my diabetic nurse has told me i must see a specialist now as since having FND my fasting level has gone from 50 to 90 and she says its not what i eat but because im not active now. 
    im off morphine and diazapan as they didnt help me anyway but whats annoying is the neurologist told us that i should up my other meds to a really high dose and would write to tell my gp. my gp hasnt received the letter concerning my meds . on top of that pain management told me to double morphine intake at my initial appointment but didnt write to my gp or myself to say. so we did that on his advice. im concerned that the specialists dont talk to each other or communicate well as im told  one thing then another. but now im diagnosed.....i only do what the neurologist says as he seems to be the only one who understands me and knows what im going thru is real. 
    i know ive gone on a bit about my own FND but having gone and still going thru so much, i feel reading about my experience might just help you even a little. FND isnt something many gps are aware of and therefore try to treat symptoms which could be a number of other ilnedses. i had to beg and beg for people to listen and i fell on deaf ears. tc


    hello,  recently diagnosed after a ridiculous inpatient stay for 7 days for an Mri and consultation.  I sound ungrateful but as a nurse...well prob former nurse it seemed a costly way forward
  • Adrian_Scope
    Adrian_Scope Posts: 10,935 Scope online community team
    That's a long wait for an MRI and consultation @Careyon. Were you kept in as a patient just to wait for them? 
    How are you feeling about your diagnosis? 
    Community Manager
    Scope
  • wavedancer
    wavedancer Community member Posts: 8 Connected
    Careyon said:
    Susan46 said:
    hi
    i was diagnosed with FND a month ago. previous to that in april i was
     diagnosed with degenerative disc disease with bulging discs c2 to c7. every time i went to gp he gave me painkillers. i too have tremors, involuntary shakes and spasms, my headaches, neck pain, shoulder pain, back pain, ear pain, short term memory loss, confusion and my arms and legs not working properly, my speech issues....i asked my partner if im going crazy. i was taken into hospital due to severe neck pain and agonising pressure in the head. it was only then did drs actually see what i was having to live like. mri and ct scan showed everything in head ok. after months of waiting i saw a neurologist who diagnosed FND. so i was relieved i wasnt dying or going crazy. 
    FND is a specialist subject sO only medical staff who know about FND should help. im going to start FND physio soon and am on a waiting list for seeing neuropyschologist . FND is when the brain sends and receives messages but doesnt react correctly. all the symptoms are REAL. i had physio sorted but the neurolost cancelled it as FND needs different physio as ordinary treatment could make the problems worse. i will see a neurophyschologist to retrain my brain to think different and hopefully in time i will get better. since march 4th i have been this way and i now use wheelchair to go out with partner pushing me and in the home i have zimmer, comode, shower stool which is a godsend. both bladder and bowel are incontinant since this started and i get exhausted after 5 metres of walking. as soon as i stand im on a rocky boat and even when i sit this happens virtually every day. i cant cook because i have little strength in arms and hands and cant judge distance when going to pick something up. the neurologist aked me what i hope will happen with treatment. i said....as long as i can walk and speak again and stop the depression setting in then that would be great. yep, the tears and the cant do anything mood has set in and im sad a lot cos i feel ive been put to the back of the queue with nhs and ive had to fight every bit of the way to get anything done. im now struggling with sugar levels and my diabetic nurse has told me i must see a specialist now as since having FND my fasting level has gone from 50 to 90 and she says its not what i eat but because im not active now. 
    im off morphine and diazapan as they didnt help me anyway but whats annoying is the neurologist told us that i should up my other meds to a really high dose and would write to tell my gp. my gp hasnt received the letter concerning my meds . on top of that pain management told me to double morphine intake at my initial appointment but didnt write to my gp or myself to say. so we did that on his advice. im concerned that the specialists dont talk to each other or communicate well as im told  one thing then another. but now im diagnosed.....i only do what the neurologist says as he seems to be the only one who understands me and knows what im going thru is real. 
    i know ive gone on a bit about my own FND but having gone and still going thru so much, i feel reading about my experience might just help you even a little. FND isnt something many gps are aware of and therefore try to treat symptoms which could be a number of other ilnedses. i had to beg and beg for people to listen and i fell on deaf ears. t


    hello,  recently diagnosed after a ridiculous inpatient stay for 7 days for an Mri and consultation.  I sound ungrateful but as a nurse...well prob former nurse it seemed a costly way forward

  • wavedancer
    wavedancer Community member Posts: 8 Connected
    Carrion said......

    "hello,  recently diagnosed after a ridiculous inpatient stay for 7 days for an Mri and consultation.  I sound ungrateful but as a nurse...well prob former nurse it seemed a costly way forward"

    Before I had my diagnosis I had a hospital stay too. I think they like to do all kinds of other tests including bloods to rule out other neurological diagnoses first. They originally thought I may have MS, which thankfully I didn't. I often think it would be easier for people to understand that diagnosis as it is something people have heard of. When people ask what is wrong with me and I say FND I then have to explain what it is and how it effects my body and life in general.

    It may have been that it was quicker route to get an MRI than the waiting list for an outpatient appointment which can be extremely long. I'm an ex nurse so understand  why you think it's a costly way forward. I guess I'm never surprised these days at some of the decisions that are made where the NHS is concerned. I hope that now you have an FND diagnosis you'll be able to get the support and treatment to help you deal with it. Has your neurologist suggested a way forward?

    Best Wishes,

    wavedancer



     

  • Careyon
    Careyon Community member Posts: 4 Listener
    Carrion said......

    "hello,  recently diagnosed after a ridiculous inpatient stay for 7 days for an Mri and consultation.  I sound ungrateful but as a nurse...well prob former nurse it seemed a costly way forward"

    Before I had my diagnosis I had a hospital stay too. I think they like to do all kinds of other tests including bloods to rule out other neurological diagnoses first. They originally thought I may have MS, which thankfully I didn't. I often think it would be easier for people to understand that diagnosis as it is something people have heard of. When people ask what is wrong with me and I say FND I then have to explain what it is and how it effects my body and life in general.

    It may have been that it was quicker route to get an MRI than the waiting list for an outpatient appointment which can be extremely long. I'm an ex nurse so understand  why you think it's a costly way forward. I guess I'm never surprised these days at some of the decisions that are made where the NHS is concerned. I hope that now you have an FND diagnosis you'll be able to get the support and treatment to help you deal with it. Has your neurologist suggested a way forward?

    Best Wishes,

    wavedancer



     

    Gosh I have no idea how to respond.  and get posted.  I feel so guilty frustrated and hope I can build a new life 


    Carrion said......

    "hello,  recently diagnosed after a ridiculous inpatient stay for 7 days for an Mri and consultation.  I sound ungrateful but as a nurse...well prob former nurse it seemed a costly way forward"

    Before I had my diagnosis I had a hospital stay too. I think they like to do all kinds of other tests including bloods to rule out other neurological diagnoses first. They originally thought I may have MS, which thankfully I didn't. I often think it would be easier for people to understand that diagnosis as it is something people have heard of. When people ask what is wrong with me and I say FND I then have to explain what it is and how it effects my body and life in general.

    It may have been that it was quicker route to get an MRI than the waiting list for an outpatient appointment which can be extremely long. I'm an ex nurse so understand  why you think it's a costly way forward. I guess I'm never surprised these days at some of the decisions that are made where the NHS is concerned. I hope that now you have an FND diagnosis you'll be able to get the support and treatment to help you deal with it. Has your neurologist suggested a way forward?

    Best Wishes,

    wavedancer



     


    That's a long wait for an MRI and consultation @Careyon. Were you kept in as a patient just to wait for them? 
    How are you feeling about your diagnosis? 

    Careyon said:  I feel confused,  its all intangible.  I feel ashamed like somehow I am making it all up.  The truth is for years i have had an isdue with fatigue. wavedancer said:
    Carrion said......

    "hello,  recently diagnosed after a ridiculous inpatient stay for 7 days for an Mri and consultation.  I sound ungrateful but as a nurse...well prob former nurse it seemed a costly way forward"

    Before I had my diagnosis I had a hospital stay too. I think they like to do all kinds of other tests including bloods to rule out other neurological diagnoses first. They originally thought I may have MS, which thankfully I didn't. I often think it would be easier for people to understand that diagnosis as it is something people have heard of. When people ask what is wrong with me and I say FND I then have to explain what it is and how it effects my body and life in general.

    It may have been that it was quicker route to get an MRI than the waiting list for an outpatient appointment which can be extremely long. I'm an ex nurse so understand  why you think it's a costly way forward. I guess I'm never surprised these days at some of the decisions that are made where the NHS is concerned. I hope that now you have an FND diagnosis you'll be able to get the support and treatment to help you deal with it. Has your neurologist suggested a way forward?

    Best Wishes,

    wavedancer


    Hi thank you for responding.No said a website but then didnt write it down. And a locum gp was unhelpful. 

    I feel so frustrated and like I dont understand.  I  am just hoping I can make a new life for myself.



    Hi thSusan46 said:
    hi
    i was diagnosed with FND a month ago. previous to that in april i was
     diagnosed with degenerative disc disease with bulging discs c2 to c7. every time i went to gp he gave me painkillers. i too have tremors, involuntary shakes and spasms, my headaches, neck pain, shoulder pain, back pain, ear pain, short term memory loss, confusion and my arms and legs not working properly, my speech issues....i asked my partner if im going crazy. i was taken into hospital due to severe neck pain and agonising pressure in the head. it was only then did drs actually see what i was having to live like. mri and ct scan showed everything in head ok. after months of waiting i saw a neurologist who diagnosed FND. so i was relieved i wasnt dying or going crazy. 
    FND is a specialist subject sO only medical staff who know about FND should help. im going to start FND physio soon and am on a waiting list for seeing neuropyschologist . FND is when the brain sends and receives messages but doesnt react correctly. all the symptoms are REAL. i had physio sorted but the neurolost cancelled it as FND needs different physio as ordinary treatment could make the problems worse. i will see a neurophyschologist to retrain my brain to think different and hopefully in time i will get better. since march 4th i have been this way and i now use wheelchair to go out with partner pushing me and in the home i have zimmer, comode, shower stool which is a godsend. both bladder and bowel are incontinant since this started and i get exhausted after 5 metres of walking. as soon as i stand im on a rocky boat and even when i sit this happens virtually every day. i cant cook because i have little strength in arms and hands and cant judge distance when going to pick something up. the neurologist aked me what i hope will happen with treatment. i said....as long as i can walk and speak again and stop the depression setting in then that would be great. yep, the tears and the cant do anything mood has set in and im sad a lot cos i feel ive been put to the back of the queue with nhs and ive had to fight every bit of the way to get anything done. im now struggling with sugar levels and my diabetic nurse has told me i must see a specialist now as since having FND my fasting level has gone from 50 to 90 and she says its not what i eat but because im not active now. 
    im off morphine and diazapan as they didnt help me anyway but whats annoying is the neurologist told us that i should up my other meds to a really high dose and would write to tell my gp. my gp hasnt received the letter concerning my meds . on top of that pain management told me to double morphine intake at my initial appointment but didnt write to my gp or myself to say. so we did that on his advice. im concerned that the specialists dont talk to each other or communicate well as im told  one thing then another. but now im diagnosed.....i only do what the neurologist says as he seems to be the only one who understands me and knows what im going thru is real. 
    i know ive gone on a bit about my own FND but having gone and still going thru so much, i feel reading about my experience might just help you even a little. FND isnt something many gps are aware of and therefore try to treat symptoms which could be a number of other ilnedses. i had to beg and beg for people to listen and i fell on deaf ears. tc


    hello,  recently diagnosed after a ridiculous inpatient stay for 7 days for an Mri and consultation.  I sound ungrateful but as a nurse...well prob former nurse it seemed a costly way forward.   But when seeing dr was told no specialist in wales and wont pay

Brightness

Complete our feedback form and tell us how we can make the community better.