7 years with FND, getting worst.. - Functional Neurol...

Functional Neurological Disorder - FND Hope

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7 years with FND, getting worst..

TomDanielPerry88 profile image

Hi everyone

I've been living with the confusing and enormously frustrating diagnosis of FND illness for about 7 years now, although I only came across the forum today. I thought I would introduce myself and say a little (or a lot) about what I've been going through. It would be great to connect with others who might be able to relate to my situation.

My first real symptoms began at University in 2009, and things have got progressively worst since, although there have been periods where I have regained much of my health, only to loose it again.

As a child I was otherwise well, but I did have some moderate learning difficulties and trouble focusing. I also had problems with controlling my anger and had frequent temper tantrums. As an adolescent I suffered from tiredness, lethargy, a continuing lack of focus, and low mood. Looking back, these were signs of ADD that were missed, and I am looking into this now. Aside from this, my childhood was quite unremarkable; family life was loving and stable. However, at the age of 17 I experienced a traumatic incident with a close friend where I was falsely accused of sexual assault and arrested. It did not go to court. It was a deeply upsetting and humiliating time; I was forced out of the closet before I had even given my sexuality much thought, horrible homophobic rumours were spread around the small town I lived in at the time, my house was regularly vandalised and on one occasion I was violently attacked and publicly shamed when out with friends. The reason I mention this is because it had a profoundly detrimental affect on my mental health, which I think may explain some of the somatization I now experience as part of my FND. It was also when I started to use drugs as a means to cope with stress, which has also subsequently impacted on my mental and physical health in a huge way.

My first real symptoms began at university several years later; a sudden onset of palpitations and breathlessness. I remember how anxious I was about this at the time, and I convinced myself I had a heart problem. I soon began to develop aches and pains, fatigue, and strange muscular and skin sensations. I saw a cardiologist at the time who ran some tests which all came back normal. I followed up with my GP who prescribed me citalopram to deal with the anxiety.

This was the start of my FND journey and I believe epitomises the inadequate response from the medical profession towards "medically unexplained" symptoms, which I think could benefit from a more holistic bio-pycho-social approach, an approach I subsequently found a few years later when I started seeing a natural medicine practitioner. I look back to this time and think how easy it would be if I were still only dealing with palpitations and fatigue. I was scared at the time, but I really had no idea what was to come...

By the time I graduated from University things began to really deteriorate. I started to experience frequent spells of dizziness, lightheadedness on standing, weakness in my arms and legs, pain in my joints, jelly legs and foot-dragging when walking, muscle spasms, and tremor in my hands. I was also suffering from frequent mind blanks, some mild memory problems, difficulty thinking clearly, and forgetfulness. Incidentally, around this time I also started thinking a lot about the trauma I experienced when I was 17. I remember that as my health deteriorated I became increasingly preoccupied with this, and began to feel hugely guiltridden.l and uncertain about the whole thing. It was apparent that I had not dealt with it properly at the time and had probably repressed many of my emotions and thoughts associated with it.

I saw a neurologist at the beginning of 2012 and this is when I received my first FND diagnosis. He said that what I was experiencing was "severe anxiety state with somatisation" and recommended that I resume my anti-anxiety medication which I had since stopped. He had nothing specific to say about my drug use. Whilst I was reassured that he didn't believe I had a progressive neurological condition, I was still deeply worried by the severity and debilitating nature of my symptoms and asked for an MRI of my head, to which he agreed. It came back normal, and I was told this conclusively ruled out MS.

Around this time I also started seeing a natural medicine practitioner, who I am eternally grateful for. This was the beginning of understanding the true complexity of my "medically unexplained symptoms". One thing that was apparent to her was the likelihood that my recreational drug use had caused some damage, and she was certain that what I was experiencing wasn't simply psychogenic. She also believed that I was dealing with several food intolerances, and that my poor diet was a significant contributing factor, and that my inability to process what had happened to me when I was 17 was preventing me from healing. Importantly, she provided a solution based on addressing the underlying causes rather than simply managing symptoms. She strongly advised against anti-anxiety medication and to this day I have stayed away from them.

Over the years that I have been seeing her, there have been times when I regained much of my health. I put this down to 3 main things. First, a nutritional programme to promote physiological healing of the brain and nervous system, which included specific nutritional supplements and the elimination of certain foods, including wheat, dairy, and sugar. Second, the cessation of regular alcohol use, and all drugs. And third, dealing with unresolved trauma, learning how to effectively managing my emotional health, and reducing stress regarding my health and symptoms.

Unfortunately, a few years ago, after regaining my health up to a point that I was able to return to work, I began to regularly use drugs and alcohol again. I also stopped investing time in managing my mental health, and took on a demanding job which caused more anxiety and stress. Over the course of about a year my health progressively deteriorated and by Christmas 2014 I experienced a huge relapse of my symptoms. This time it was the worst I have ever experienced, and I am yet to make any significant recovery.

Over the last few years I have experienced a whole range of debilitating physical and mental symptoms which come and go, fluctuate in severity, disappear and then return, and some which seem to have gone completely, and some new ones altogether. They include:

- Partial-seizure-like episodes at night and sleep paralysis. As I am drifting off to sleep my entire body goes stiff and a feeling of paralysis occurs, where I feel compelled to move in order to prevent the paralysis. Simultaneously I feel brain zaps and flashing lights, and feelings of confusion and disorientation like I don't know where I am. By body temperature drops and I shiver uncontrollably. This keeps me up for hours and the next day I often have a terrible headache and feel absolutely exhausted. Fortunately, I experience this less frequently now.

- Insomnia - struggling to fall asleep or falling sleep but waking up after 15 minutes with racing heart, confussion, and cravings for food.

- Racing jumbled / incoherent thoughts and confussion when trying to sleep at night and upon waking.

- Breathlessness and difficulties breathing at rest and when trying to sleep. Sleep apnea symptoms, such as a feeling that my airwaves are closing when drifting off to sleep and waking seconds later gasping for air.

- Pain and pins and needles in legs at night

- Problems with my vision and hearing - sensitivity to light and noise, and an inability to hear people in crowded places + tunnel vision, and lack of clarity / difficulty identifying things or people.

- Shooting pains and numbness down my right side accompanied with nausea and weakness.

- Difficulty understanding what people have said to me or following conversations.

- Delayed response when trying to keep up a conversation and scrambling feeling in my head when trying to figure things out.

- Difficulty multitasking or concentrating

- Difficulty organising my thoughts or thinking straight

- Slurred speech and difficulties projecting my voice with weakness in my throat and chest

- Severe exercise intolerance and tight chested when exercising

- Racing heart and erratic heart beat associated with dizziness and nausea, during exercise and sex / masturbation. For a period this seemed to trigger arrhythmia-like episodes which brought on severe dizziness and paralysis feeling, although this was never caught on an ECG.

- Uncharacteristically angry and irritable, with severe mood disturbances.

- Severe anxiety and depression

- Feeling of impending doom

- A feeling that my world is fading away and everyone / everything is more distant and inaccessible.

- Forgetting what day it is + my plans, over and over.

- Socially withdrawn - feeling that I can't relate to anyone

- Overwhelmed by places with lots of people

- Lack of motivation for anything

- Weakness in my arms and legs, problems with dexterity and using hands.

- Pain, soreness and pin pricks / crawling feeling on skin

- IBS

- Excessive mucus in throat and nasal drip

- Lack of coordination and clumsiness.

- Overactive bladder and pain when bladder full

- Weak urine stream and need to push forcefully to empty bladder

- A degree of incontinence.

- Inability to think about things on demand - mind blocks and inability to access thoughts or pieces of information.

- Thoughts that come and go and inability to develop thinking.

- Severe mind blanks mid-thought or mid-activity - What was I thinking? What was I doing?

- Difficulty following instructions or directions

- Difficulty transposing information or filling out forms.

- Almost completely unable to use numbers or do mental arithmetic.

- Long-term and short term memory problems - difficulty remembering university and childhood memories - fuzzy memory or complete lack of recollection.

- Inability to put memories in chronological order

- Unable to recall what I have just been doing or recent events when asked.

- Delayed recognition of people's faces

- Inability to remember names

- Inability to follow conversations or to think of what to say

- Difficulty reading and writing - delayed recognition of the meaning of words and spellings.

- Difficulty speaking and articulating myself

- Difficulty thinking and speaking at the same time - constant pauses when speaking

- Unable to multitask

- Unable to learn new information

- Forgetting what day it is

Over the last two years I have seen two more neurologists who both agree that my symptoms are not the result of neurological disease but a functional disorder whereby my nervous system isn't quite functioning as it should be. One described it as, "the hardware of your nervous system is intact, but the software isn't working properly". They both also agreed that my memory problems can be explained by impaired concentration caused by anxiety, low mood, and poor sleep, and potentially exasperated by drug use. I have since seen a sleep specialist who has ruled out any primary sleep disorder. No one ever says anything specific about the affects of drug use. I have also seen another cardiologist, a respitary specialist, and a rheumatologist, and none of them could diagnose anything. I have been discharged from all their care still none the wiser.

Things were again further complicated when I was diagnosed HIV positive last year. All my symptoms were greately exasperated. This is hands down the worst I've felt and I've barely made any recovery in over a year. It seems that whatever resilience my body had before has been lost and it also points to the fact that my symptoms have a physiological basis, although the doctors have tried to suggest that the stress of being diagnosed has contributed to my anxiety and that's why I am feeling this way!

For those that don't know, HIV is now a completely manageable condition and very few people experience neurological complications these days - that's if they are diagnosed in good time and start effective treatment - both of which are true of me. I was diagnosed just weeks after infection and I started treatment a few weeks later. I've now been undetectable for 6 months, my immune system is functioning fine, and my life expectancy is near normal. The last neurologist I saw assured me that I do not have neurological HIV.

So where does this leave me? My symptoms are now so debilitating I have almost no quality of life. I have been unemployed for over two years, my mental disabilities are so profound I can barely read or learn new things, which means distracting myself with anything is nearly impossible, I can only do light exercise, and my social skills are almost non-existence. Just the thought of leaving the house on most days feels me with darkness. Not only this but my memory problems are now so profound I spend most days feeling confused and agitated and it's almost impossible to find any respite.

I think my story highlights a few things. Firstly, the medical profession is great at diagnosing common known conditions, but anyone with anything more nuanced or complicated is completely missed. Second, it's clear to me that many people diagnosed with "psychosomatic" illness have some contributing physiological dysfunction, and yet without advanced testing or the help of a functional or natural medicine practitioner they are unlikely ever to get the help they need. In many cases simply dealing with psychological factors wont resolve everything. Thirdly, a holistic approach in-line with functional medicine is greatly needed, and I strongly suggest that people consider seeing a natural health practitioner who understands illness as a systems-based mind-body interconnected problem, not simply a single disease-state phenomenon.

I would love to hear from anyone who can relate to my story or may have some advice or comments.

Tom

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30 Replies
Ailsaw profile image
Ailsaw

Hi Tom

Welcome to the forum , it truly is a very complex , debilitating and frightening condition and you will certainly get a lot of support from here. I try like you to find natural ways to improve my health as the medical profession continually try to push more and more prescription drugs down our throats ! I am trying mindfulness at the moment and I am finding it helping my anxiety. I try to take each day at a time . Lost my job yesterday but will try not to dwell on that and see it as one less thing to worry about at the moment and focus on getting my seizures under control.

Best wishes

Ailsa

TomDanielPerry88 profile image
TomDanielPerry88 in reply to Ailsaw

Hi Ailsa

Thanks for your message. Sorry to hear you have lost your job. So frustrating. But you are right, it is one less thing to worry about. When you are sick it seems unfair to even have to think about things such as working, although I know many of us have no option. I'm lucky to have the support of my parents so I am back at home currently. Yes the prescription drugs unfortunately aren't going to solve the problem, especially as the underlying mechanism is unknown / multifaceted. The search for one active drug which is all encompassing is, in most cases, futile, and the sooner the medical profession realises this the better. May I ask what natural approaches you take? I'm currently interested in the gut as a source of inflammation - particularly in the brain & nervous system, and how to promote healing / rebalancing of beneficial gut bacteria. Mindfulness is indeed brilliant, I must start practicing again. It also helps to reduce inflammation in the brain and if coupled with a 'good day' I notice quite an improvement in my reading ability and anxiety / mood!

Tom x

Ailsaw profile image
Ailsaw in reply to TomDanielPerry88

Hi

Yes I agree I think the gut has a lot to do with our state of health it is also our engine and I have suffered with chronic IBS for many years. Again doctors have thrown all sorts of pills at me. I have cut out bread and try to keep wheat products to a minimal amount. Unfortunately I had a poor childhood and don't expect you can undo years of bad eating overnight. I have also been on long term painkillers and had mega doses of anti biotics when I fell ill with a life threatening infection. It is a lot of trial and error.

Ailsa

TomDanielPerry88 profile image
TomDanielPerry88 in reply to Ailsaw

Hi Ailsa

I hear you. I also had a poor diet as a kid and think that it could well explain my ADD symptoms. It is amazing how the body can respond though, even after years of suboptimal nutrition - it is always striving for health and as soon as you give it the right fuel it's amazing how much better you feel.

I think you're right to think about the gut after antibiotics and painkillers. Obviously entirely necessary, but it's important to try and replenish good bacteria afterwards :)

Wishing you well, Ailsa.

Tom

kjkla85 profile image
kjkla85

Hi Tom, thank you for sharing your story. It is such a debilitating condition I have spent many days/weeks feeling as though I'm fumbling in the dark for something I'm not even sure of. I am lucky in that I am going through a much better phase at this time although am certainly not taking it for granted.

Glad to see you have the support of your parents. We really need someone to fight with us and stay by our sides. I wish you well.

I too am looking into diet/gut health. My next plan is to start making kefir and try other fermented foods. I'm not 100% gluten free yet but mostly. I practise mindfulness everyday.

I'm not sure if you've tried CBT? I found planning my days and achieving things gave me a bit of purpose in the darkest days. Now I make sure I do 1 thing I like everyday whether it be reading, colouring or candle lit bath etc. Best wishes K

TomDanielPerry88 profile image
TomDanielPerry88 in reply to kjkla85

Hi K

Thanks for your message, and that's really great you're going through a good phase, it's times like that which give you hope.

Yes it's so important to have the family support, I am lucky.

The gut connection to neurological and immunological issues is fascinating, it seems many problems begin in the gut. I currently have leaky gut, but have been told to stay away from fermented foods by my natural health practitioner for reasons I don't quite understand, although I do not doubt that they can be incredibly beneficial for replenishing good bacteria. I try and eat as many pre and pro-biotic foods as possible and stay away from foods known to cause irritation of the gut, such as alcohol, gluten grains, in particular wheat, sugars, and cow dairy and any junk. I sometimes have to be careful with raw veggies and nuts too.

CBT can be helpful, but it's difficult to find time to sit down and do the thought diary, particularly when you're having a bad day. I find mindfulness and Buddhist meditations around acceptance really helpful, again helps if you're in a better place. I love your '1 nice thing' suggestion, as part of a self care routine this can be really helpful. I like to do aromatherapy self- message and candle baths with relaxing music :)

Wishing you more good days and I hope you continue to feel better, K.

Tom

kjkla85 profile image
kjkla85 in reply to TomDanielPerry88

Thanks Tom. You do have a wealth of knowledge to share. I will do some more research on the kefir and fermented foods. I've been diagnosed hypothyroidism so am learning all about that too. I've started making bone broth and drinking that everyday...not quite able to cut caffeine completely though! Just had a nice candle lit bath and meditation session so feeling relaxed :)

TomDanielPerry88 profile image
TomDanielPerry88 in reply to kjkla85

Hi K

Sounds lovely. And bone broth, brilliant!

Sorry to hear about your thyroid diagnosis. One of my favourite doctors who produces information on functional medicine and natural treatments is Dr Hyman and he talks often about the importance of thyroid health, I just did a quick google and found this which might be of interest -

drhyman.com/blog/2015/06/10...

Hope you are enjoying your post-meditation zen state and continue to find relief :)

Lovely speaking with you

Tom

kjkla85 profile image
kjkla85 in reply to TomDanielPerry88

Thanks Tom I will have a read tomorrow :) speak soon

TomDanielPerry88

Dear Tom.

You have shared a remarkable and resilient journey with us. I thank you for doing that in such personal detail.

Without avoidance of the details, I focus at this moment on your story highlights in the second to last paragraph.

I agree.

This cannot be considered a one-sided disease by any of us. It is intertwined in our very existence and by my own accounts, it often exceeds my coping skills.

As a good friend observed to me in conversation, "NEW approaches are needed." His thought led me to remark that the disease diagnosis is not the end but only the beginning.

Tom, after twenty-three years of symptoms and a brief passage of time post diagnosis, I tell you that I have already forsaken the label of FND. It is meaningless because it is used in a context that my friend observed applies to a"huge morass of confused and confusing manifestations. "

I agree.

I know that I have medically unexplained symptoms. I know I also have organic disease. I know this combination affects my being in every way that you so aptly described.

I do not expect medicine to unravel this tangled ball of yarn without dissecting its components. I do use the remaining strength I have left now to ask for research into understanding the causes.

We cannot properly diagnose something without a cause. We cannot say one mystery is solved by another mystery. It leaves us with no avenues to ask for help. Treatments must have some... at least some science behind them.

I hope to have further interactions with you. I believe you have much more valuable insight to share that I can learn from. I will do everything in my power to keep an open mind about the disease but I will not be defined by such a vague and discrediting label as is currently in use.

My best wishes to you on this day.

Dan / Seattle

TomDanielPerry88 profile image
TomDanielPerry88 in reply to

Hi Dan

Thanks for taking the time to reply in such detail and it's great to hear your perspective.

I think we must start by acknowledging that the answers to the problems we face are unlikely to be found exclusively within the model of western medicine as it is currently practiced. That isn't to discredit the medical profession entirely but rather to recognise that it's important to keep an open mind, and to search outside of the 'mainstream' of medicine in order to identify and target the multitude of potential pathways and mechanism involved in such a complex disease state such as FND.

We must strive for scientific evidence-based understanding but we must also recognise that some things are just not studied because big pharma doesn't see a profit in it. People find solutions every day in more holistic approaches, and the evidence is in the clinical practice where lives are greatly improved. At the same time there is obviously a definite need for more evidence beyond the anecdotal, and we should strive for scientific testing in order to advance understanding and identify potential therapeutic interventions which moves us closer to randomised clinical trials with controls.

I really recommend a book by a pioneering neurologist David Perlmutter, called the Brain Maker - I'm certain that holistic and nutritional approaches which support brain health as are outlined in the book could be of benefit to those with FND, recognising both organic and psychogenic causes.

Wishing you well, Dan, and I look forward to talking with you again.

Tom

in reply to TomDanielPerry88

TomDanielPerry88.

You respond with such thoughtful intellect and a worldly view. I accept your premise of overall health with much enthusiasm.

Thank you. I do look forward to more conversation. I hope to be up and about tomorrow. Have depleted my life energy for today. Will rest now.

Best regards to you. Glad you are here.

Dan / Seattle

in reply to TomDanielPerry88

TomDanielPerry88

Tom.

In the last moment of this day where neurons are actually firing down the line instead of at each other,

I remember what I wanted to say to you.

My dream from hereon is that the organized world of diagnosticians, treatment and continuing care providers in the field of all medicine would take heed of our simplest of requests:

Give the sufferers of medically unexplained symptoms a decent pathway to follow for accessing care. We can do without all the bias, the precepts of what they think and believe we should have and the endless apprehension of what disappointment our next medical encounter will bring, if they just give us a pathway.

Is that too much to ask as we try to alleviate our own suffering?

I do not think so. I can read a map and make my own choices but I have to have some choices to begin with!

May the day end on a bright note of hope.

Best thoughts to you Tom. Glad you are here.

Dan / Seattle

TomDanielPerry88 profile image
TomDanielPerry88 in reply to

Dan,

I'm glad you remembered, it's a relief when the neurons finally fire and the thought / comprehension arrives, right?

I entirely agree; a pathway to care is absolutely essential and a basic right. Mental health care in the U.K. is shockingly under funded and inadequate, with most people being managed by their GENERAL practitioner unlike almost every other chronic condition whereby you have a secondary care consultant, at least initially. Mental health is not consider a serious condition and is routinely trivialised by doctors, and as FND is largely considered psychosomatic, I think we often suffer the same fate.

It is difficult however with so much variation and without any agreed treatment protocol, what would the care pathway look like? FND patients must first come to an agreement as to what good FND care looks like, and then advocate for it. Patient activism can work, just look at the history of HIV, I wouldn't have the life expectancy or quality of care that I have now as a HIV patient were it not for the early activists of the 80s who came together, demanded treatment research, and designed patient centred and lead care.

Rest up Dan, and thank you, today has ended quite well actually, my inability to read and understand what people are saying to me is slowly lifting thank god!! And some hope returns.

Tom

in reply to TomDanielPerry88

TomDanielPerry88.

Tom.

What a blessing in words. You have great vision for what patients must agree that good FND care should look like. It is a marvelous approach that you have and can relate through your experience with HIV treatment system.

Please keep writing to all. You bring wisdom and fresh ideas. Hope does return. Spirit is renewed.

Thank you.

Dan / Seattle

Tom,

Thanks for sharing your full story. It sounds like you have traveled a difficult road. I respect your candidness, your tenacity to not accept it all as FND and your openess to holistic options. Sorry about your HIV diagnosis, which compounds your situation. But glad to know it is manageable.

TomDanielPerry88 profile image
TomDanielPerry88 in reply to

Thanks for your kind message :) Yes the HIV diagnosis was ridiculously untimely. Ha. Honestly and openness is cathartic and I hope it encourages others to be true to their story and unashamed about whatever it is their dealing with x

Dear Tom, your journey has been incredible, so much mental anguish comes through, it's amazing you have come this far after so many years of what you have been through. Unlike you I know my illness is caused through pain that I was just left to get through with no help from my dr, he would never accept my pain and just kept saying I had depression and anxiety. I actually had sciatica and when I sat it was like sitting on razor blades, I permanently had an ice pack on my back, the cramps in my leg and feet were also agony. My chiropractor kept saying I needed Diazepan for him to help put my back right but my dr kept refusing saying I didn't need them. After 6 weeks of agony the chiropractor clicked my back into place but I was still in so much pain, the spasms then moved up my shoulder into my neck and jaw, and I was bent over to the right although I never felt bent I could see it in a mirror, I was also struggling with breathing. An older chiropractor at the same practice said he had to straighten my neck and jaw to help with my breathing, much more agony when he done this and I had my first seizure, I could hear but not move, talk, and just waves of pain. I left the practice in an ambulance. The dr at the hospital was so angry I'd been left in pain for so long and that my dr had a duty of care to help me, he gave me Diazepan to get me home but my dr ignored the ambulance report and just started to send me to phsychatrists, after seeing 3 the last was a senior who sent my dr a letter stating he'd failed to look at organic answers. My partner had already paid for me to see a private nuerologist who said my pain had been allowed to run riot and had formed its own entity. By this time I already had most of the symptoms you've discribed. The never ending pain has never gone, it's moves off its own accord to where it wants to go and I just have to live with it. I'm angry that all FND when finally diagnosed are asked has anyone died, did you have depression, was you anxious. NO I was in agony and left to suffer. Your parents sound wonderful, my mother just said (some people cope with pain better then others) If I'd broken a bone I would have been given pain relief if I had cancer I would get pain relief. Now nothing helps, no medication just put heat pads on where pain is on the day and wait for it to pass and go to next part of my body, jaw, head it chooses. FND symptoms (I've looked them up on the FND website) like you I have the majority of them. But the bottom line for me is I didn't get to where I am through depression and anxiety. I do now have these 2 years on just to add to the other symptoms. I'm so sorry for the past you have to deal with but we are all being lumped into the same FND diagnosis however we came to get it. Anti depressants thrown by the bucket at us, told to carry on with life, (what life) and left to suffer. You sound a lovely person, thoughtful and kind but have been so badly abused your poor brain couldn't cope with more abuse. I'm wishing you all the best with what you are trying and your not giving up. Big hug Lisa. 🤗

in reply to

Lisa,

I hope you get help soon for your pain. That must be awful, and I know how disheartening it is not to get the treatnent you deserve.

I agree with your statement about cancer. Sadly, i read a story, which i thought was in the daily mail, about a woman with cancer who died because doctors didn't believe she was sick until months before she died.

in reply to

My parents have both had cancer, my mums was caught early by mammogram, but my dads was ignored and left, they got an apology but my mum told them to stick it and help him, they did although by then it had spread, he made it through though and they are both still going in their 80s now. My dad was given pain relief and blood transfusions, without it he wouldn't have made it. I have nothing to help, and no way to get help until I go back to London hospital. My family are struggling with my diagnosis and lack of support from professionals. I rarely see my family now so at least they don't have to watch me suffer in pain. Housebound and quiet is all I can do. Kindest regards Lisa

in reply to

That's awful they both had cancer, but glad your parents survived cancer. I can't believe your doctors are not doing more to help you, especially with a family history of cancer.

It's tough you don't have your family near you, but good you can vent here.

in reply to

That's very true, I know I need the outlet to vent, there is no where else for me then luckily finding this website, I am so glad my parents are still here even if I don't see them, they are still getting on with their lives, holidays, and seeing their great grandchildren. 😊

in reply to

Remember you are not alone. I'm in the U.S., and we have meetup groups where you can meet people with same hobbies, interests or illnesses. If you have that in the UK, check it out.

TomDanielPerry88 profile image
TomDanielPerry88 in reply to

Hi Lisa

Sorry it's taken me a couple of days to respond, it's been a difficult 48 hours.

I just wanted to say thanks for your kind and thoughtful message and for sharing your story with me. I'm so sorry for the terrible time you have had. Your story highlights how incompetent the medical profession can be in helping people who have been labelled under the 'mental health' category, and how our reasonable responses to our debilitating symptoms - i.e. anguish and anxiety, are believed to be the cause rather than a rational response to pain, disability, and the feeling that we are not being listened to or understood.

It upsets me to hear that you feel that you don't have much support - have you tried citizens advice? They might be able to suggest some local support in your area. I'm glad you have found the forum though, at the very least you have somewhere you can discuss your feelings and concerns. I wish there was something else I could do / suggest.

Wishing you the very very best, and hoping that you find some relief soon.

Tom x

in reply to TomDanielPerry88

Thank you for your lovely reply Tom, I too was not great yesterday, the citizens advice have all been closed where I live , we found one miles away but you have to go upstairs to see them, which for me cannot happen. The only hope I have left is waiting for appointments in London hospital. It will just have to keep me going. Your reply and others help me to feel not so alone that is more then I had. Best wishes to you and a big hug for luck. 🤗🤗🤗🤗. Lisa. Xx

Unfortunately in England this is not as well known, I'm saving up for Bose ear things so I could maybe go out in public, am on my own 6 days a week, there is no one to push my wheelchair about, car travel makes me ill, family are elderly, got babies that set my seizures off, brothers working hard and have their own busy lives, l friend looks after her mother 24/7 as she had a major stroke, my other friend works all the hours she can to make ends meet. I'm just glad 😁 I've found this website, it's a godsend for me. Just so glad I'm not alone and struggling anymore. 🤗🤗🤗🤗🤗🤗🤗

arlene9 profile image
arlene9

Omg its like you explaining my weaknesses and symptoms altogether theres days where i would sleep to tired and days where i cant sleep ive been walking with crutches but im to weak to go out in public unless im using a wheelchair but gets tired quickly and bad memory long and short term its been a ruff two years but was only diagnose 2017 January and its not getting better even if im telling myself i can do this ive been breaking dishes very clumsy but i trust where theres life theres hope wish you all the best my dear

Polly_49 profile image
Polly_49

Hi Tom, my doctor diagnosed me with FBD two days ago, it’s a bit of shock and so much information to take in! Your story is incredible, I felt I was reading about myself.

I’m a little low in mood at the moment so I’m finding it hard to communicate exactly how I feel but it is certainly very reassuring that I’m not alone

Polly

Mitxee profile image
Mitxee

Yes I to have and I'm at my whits end...

AjaStar profile image
AjaStar

Wow thank you for sharing so many details of your story. It really helps others to know we are not alone, we are not making this up in our head. I feel like my drinking caused my FND and when I got a little better I drank again and I got even worse. I have not drank in a year and a half but I’m not any better. How have you been?

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