I am a 20 year old University student and I'm struggling dealing with this diagnosis.
I've suffered from chronic middle ear infections for 6 years now, except last year I ended up with an inner ear infection which took 9 months to clear up. During this time I ended up having to move home and temporarily drop out of university. I didn't have any FND symptoms until after an operation in January 2014 where I had a simple t-tube insertion into my ears. I had what seems to be a reaction to the anaesthetic as I woke up 2 hours later than I should have with an anaesthetist next to me telling me I had to stay in over night, still with an oxygen mask on and in a lot of pain. I know it wasn't the norm as I had the same operation in April 2013 and I didn't wake up like this. I recovered and was sent home but I was left feeling completely exhausted.
Shortly after this I got tingles down the left side of my body and my mum noticed I couldn't move my toes or my fingers all the time. This gradually worsened into my hand and foot getting frozen and swelling and turning purple with an intense burny pain. My neurologist ran tests for MS and thankfully things came back clear. He also diagnosed me with a vestibular migraine and I take amitriptyline for it and the nerve pain.
As the vertigo began to ease I could read again and walk again and things were going great; I'm even back at university. However now I have bladder problems, difficulty swallowing, I limp when I walk and my arm and foot continue to swell and get painful. I went back to neurology and I don't feel like I was listened to properly; he started going on about an emotional trauma. 1) where do they get off saying this? He spent a grand total of 20 minutes with me, he doesn't know my life. I'm 20 I had a wonderful childhood and haven't suffered any trauma. After going through the vertigo experience I'm so happy I can live alone and continue with my studies and 2) how can an emotional trauma be connected to such symptoms? and if emotions can cause symptoms like this then why is it "impossible" to not end up with an "overloaded CNS" due to chronic sickness for 6 years mingled with 2 operations in less than a year, not being able to move for 9 months whilst growing up and having doctors call me an attention seeker? I find it all rather vexing.
He didn't even give my issue a name though he did admit there was a definite weakness in my left side and that my reflexes don't work either. I didn't have FND as a name until he sent a letter about it. He also wants to send me to a neuropsychologist but until someone tells me what these people actually do then I won't go; I don't want neuropsychology on my GP notes in case I end up in another round of "you're stressed and attention seeking" when there is actually something medically wrong with me.
Finally I was wondering if people get fatigue and struggle sometimes with daily life? I know I'm probably tired since I was only able to start moving properly in June and now with the demands of university I'm super tired and every now and then I need time off just to not move. I still do my work but from my flat instead. I take a vitamin B supplement and it has made a difference with the fatigue but sometimes resting is all which helps.
Sorry for the long message! I'm just frustrated and annoyed about it all especially as a young person I've missed out on nearly a year of my life and its frustrating having a diagnosis of something doctors don't understand properly and where they offer you zero help!
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BekiJoy
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Hi there. sounds like you've gone through the mill a bit, as have so many of us given the FND diagnosis. Basically FND means "We don't have a clue"! your case is similar to many in the Facebook group which I'd suggest you join via the home page of FNDHope.org
Click on the Join Facebook Group link and an admin will get back to you.
I myself started seizures following an operation and very poor reaction to anaesthetic and it is a common theme amongst us. Many theories abound but there does seem to be a link to oxygenation of the brain, although NOT as a result of the operation necessarily. The psychological recommendation CAN actually help. sometimes our Minds seem to get overloaded with issues (health, illness, pain, work, learning etc.) and can "fail". My belief is there is damage done that present medical abilities have yet to identify. We can get treatment and overcome our issues and the sooner the better and an more satisfactory outcome.
Anyway, enough said here. If you care to join the other 1400+ Fb group members you would be welcome. It is a "closed" group so no one outside the group can see what you've written.
Thank you for the support! I just get frustrated sometimes. The fb page is amazing thank you for the tip! Especially being young, when I see people having fun and able to do everything they want to do I sometimes feel very low and depressed with it. It does not help that the medication I'm on adds to these feelings. So it is so touching and reassuring knowing there are other people out there with the same frustrating problem. It won't stop me living, I'm determined that all it's going to do is slow it down slightly. I managed to submit without help my first University essay; that was a huge milestone as I was only able to read again back in June, so I'm feeling more positive after these experiences and hearing back from people like yourself! Thanks so much!
Hi, my name is Cathy, I am from the states. Mine all started with vestibular disease and a faulty brain surgery, followed by a spinal leak. I will go to my grave saying there is nothing wrong with most FND sufferers as far as a conversion disorder. I do believe it may for some, as conversions disorder is very real and very debilitating. Usually it is much shorter and not a lifetime illness, and usually once the underlying problem is dealt with clears on its own. I believe you, like me, and many others have a yet undefined neurological movement disorder. There are thousands of us that I know of, so must be many more besides us. I would not have even found this disorder, except that after 13 years I lost my Dr. who had my symptoms under control. Then he left and I was forced to find another Dr. who started talking FND after I had been treated with Tegretol and sinemet that worked. Praise the Lord after the Dr. increased my sinemet I am virtually symptom free again. Now the Dr. again has idiopathic dystonia, of unknown origin in other words. I know the origin, it was the brain surgery disaster. Keep looking for a good Dr. If there is nothing in your past, don't keep digging for it. Our brains are not sending correct signals to our bodies, the why I do not know. Hang in there, hope this helps you somehow. God Bless, Cathy
I can't believe that happened to you, you poor thing <3 I often find when it comes to mistakes, the doctors (in the UK anyway) have a way of pretending like they weren't at fault or the mistakes never happened. I had the ear surgery once before my operation in January and I didn't wake up or react as I did the second time, yet my old ENT surgeon said nothing was wrong. You're right about the signals, I had signal rebuilding exercises when I was hit by the vestibular disorder and they really make a difference! It takes time but it works in the long run. I don't think doctors understand just how debilitating this is sometimes though; we have no control mentally over how our brains send these signals.
Thanks so much for your reply and your story; it makes a huge difference knowing there are others out there like me. Feeling alone is the worst feeling when suffering from any chronic misunderstood illness and illness in general.
It sounds as though you have been through a frustrating and annoying experience just to add to the trauma of being very poorly. Sadly this is a journey that most FND sufferers travel. The condition is misunderstood, there are no universal terms and therefore no standard response. In my opinion because this condition is still in it's infancy regarding research it is not given the 'medical respect' it deserves and that leaves sufferers feeling marginalised, confused and just adds to the distress. Physiological services may help with some aspects in some cases, usually associated with emotional recovery, however they are not an answer and not a cure for FND. There isn't one...yet!.
Do not give up, do not just accept a medical professionals 'stab in the dark'. Become as informed as you can. FND hope and neuosymptoms.org are two starting points. In my opinion knowledge is power and that is where you may find the answers and help you need. All the best.
Thank you for your reply! It's so easy to forget that there are others who suffer from this umbrella diagnosis, especially when I have never heard of it before the diagnosis, let alone any of my friends and classmates. Thanks again for the support, it really means a lot to me.
Hi Bekijoy, I have to admit that I am frustrated with the fnd hope and neurosymptoms.org site. The biggest problem I have is that they have fnd and cd together. They are not the same thing. I have known people with cd, once their diagnosis is confirmed and they get to the root of the problem, their symptoms usually resolve. Also, they are usually confined to one or few regions of the body. They are more constant and do not wax and wane. They are usually resolved quickly after discovery. FND is a neurological continual, non resolving condition. Although, different medications do help with some of us, not all. I believe there needs to be a distinction between the two, rather than the site including them both together. There has to be research into each of these disorders, but separate from each other. I know my feelings may be controversial, but I also know that many agree with them. I have for that reason chosen to separate myself from the facebook site. I prefer to stay on here. I was too hurt by the medical profession in the beginning of this and find that the inability of these two sites to separate this issue, is only more frustrating to me, and seems to prevent the research into what this movement disorder really is. God Bless, Cathy
I too am puzzled by the twinning of functional with conversion.Surely they are two distinct conditions with seperate routes.In its pure original form functional is the term for medically and psychologically unexplained after all appropriate tests are completed.The website itself states this-yet then goes on to pair / with conversion disorder.Sadly I am aware of too many cases where it would appear that this term is being abused medically by doctors who have not exhausted every diagnostic possibility-perhaps through ignorance,for financial reasons or due to medical error during a procedure and wish for a quick and convenient end to investigations.It would appear to be the new legal way of offloading a 'problem' patient.Then there is the further muddying of the term by doctors who seem to have confused it with psychological and will only offer psychological treatments without exploring other possibilities,even if those treatments do not appear to work.Whilst I am aware that there is much crossover with symptoms this is always going to be the case-all brain based dysfunction in any condition will produce similarities be it conversion,stroke,MS,dementia,epilepsy-the list goes on.Yes,some medications may work for some but everbody's body is different.We have all arrived here from different paths,some fully tested,some not,some with apparent underlying psychological conditions,some not,all with our own particular areas of dysfunction.We are all individuals,not textbooks and should be treated as such.
I could not agree more nor could I have said it better myself. It all only leaves us more confused and hurt by a medical community that is suppose to be called "to do no harm". Then why do so many of us have now such a lack of trust in them. We need to persevere, be our own best advocates, and share our knowledge with each other and others along this way. Thanks for writing. Pray this is a good day. God Bless, Cathy
In my opinion and after my farsical experience of neurology FND is an easy money saving excuse of a 'diagnosis' to save the trouble and expense of finding out whats really wrong.You can either stay angry at being palmed off and labelled in this way(takes a lot of energy) or choose to rise above it and get on with your life as best you can,assuming your condition remains stable.It is my feeling that something happened at the time of your op(oops, no one wants to admit the problem) that changed some of the signals in your brain which is leading to the problems you now have.Damage takes time to repair.Work with what you have and go easy on yourself.Time,rest and repetition helps to build new pathways.You might want to read up on brain plasticity-it explains how you can repair better than me!Take care x
Exactly! you are so right! Since writing my rant about FND and neurology, I've avoided hospitals (apart from getting a hearing aid) and I'm focusing on the positive things in life; at least I can move and live independently which wasn't an option even 6 months ago! I'm a pianist and for a while when my hand would swell and go freezing, because it was a scary thing to happen I worried over it. Now whenever it does it (and it's always slightly more swollen than my right) I make sure I play scales everyday and practise playing music. The repetitive motion and repetitive movement has really helped bring more fluidity in my fingers meaning I can move them more than I could. It's amazing what the brain can do! Sometimes though I can't move my hand at all but these attacks are becoming less frightening because I know now that stress and worry makes it worse; instead I joke about having a giant foam finger! Thanks for your help honestly it makes a difference knowing people are out there like me!
Also about the neuropsychology; I've been referred, but like everything with the NHS it takes an age, think theres about a 6 month waiting list, but at least we have an NHS!
PS It would be good to attend the neuro psych to rule out any mental health issues-a point in your favour.They may also help you to adjust to the new malfunctioning you -it can take some getting used to!
Hi Im Michelle I too suffer with extreme ear ache and don't know when to go and see a GP as every time I go they say that my ear is fine, but the pain is debilitating or they say its your condition even before looking at me. I have numbness on the left side of my body and also my left leg feels like a dead leg and wooden. I decided that illness was not going to rule my life and also realised that this is a life changing and not life threaten condition... Its hard to try and say that it will get easier because there are some days I feel it wont but It was also like a bereavement mourning the life you had before all this happened... Having a group or someone else to talk to who knows how you feel is a big relief and I hope that this site will help us all x
Sorry your body is behaving badly!Regarding your ears have you been given antibiotics?Do painkillers help?Any other symptoms such as dizziness accompanying this?Sinus congestion or pain?Headache?
Extreme ear ache is something I'm no stranger to and I've been going round the loop too with GPs; they always say theres nothing wrong when there is clearly a problem! One thing I know which helped with my extreme ear ache was grommets; basically I had a build up of fluid in my middle ear and so the grommets allow it to drain, but it took me 4 years to get them to even check for fluid. Once the GPs missed an infection in my ear for 9 months before they did tests and found it and ever since then I've had recurrent middle ear infections. Grommets aren't the easiest things in the world but they do provide some relief; have you been referred to ENT? I do hope you find some answers; earache is miserable. <3
I second all you say, I've felt a lot more positive since realising what you describe; it doesn't have to ruin my life, it just slows the pace down a little. I also believe you gain a lot of insight and patience when living with a chronic condition and you can help people when they hit a hard time in their life because you can relate.
Thanks for your comment I hope you get some answers in regards to your ears!
Hi Angelite I have had antibiotics had my ears checked no sign of infection tried co codomal naproxin to see that helps. sometimes it takes the edge off the pain but not for long... Just recently my ear has been unbearable but I recently lost my father and was fine during the arrangements and the funeral but now things have gone quieter the pain did get worse, so sometimes i can see that stress and upset can make my condition worse
I can actually give you my fullest sympathy,as iam writing this message Ihave just developed yet another ear infection,which iam prone to,and have bad tinnitus,as well as
Hearing loss in left ear.
I have had all the symptoms simmulr to yourself that make up FND,fatigue seems to be
Part and parcel of this disorder,as I suffer from it daily as well as the weakness and pain,
Don't walk very steady either,and have bladder problems as well,though I'm better than
I was 6 moths ago,so please be patient,if you do physio or can manage stretching exercises on the floor ,slowly does it,at first. it's hard ,but pain will become less. over
Time.
I had bad vertigo attacks for months and was scared to go out,though this has eased
A lot and I have become more mobile,though I still walk with a stick due tol left. Sided
Weakness,anyway I will stop writing now,I hope you have an understanding Dr and
Family that understand this disorder,though some people are still ignorant ,but never
Hi there guys, I'm so glad not to be alone, and at the moment I have the earache from hell, I off to doctors tomorrow to get it checked out... I'm not functioning at all speech is slurred balance is awful memory loss all the usually problems that seem 10 times worse.. fingers crossed the GP will look without blaming my condition, because I could rip my head off with the pain...
It has just jogged my memory that RSD/Complex regional pain syndrome has similar symptoms to the ones you are having in your arm/foot.Just a thought.Hope you are doing better x
Hi, I am newly diagnosed and i also do not understand the emotional trauma bit. My understanding of neuro psychology is that they help the brain and body talk to each other again so improve symptoms. The brain is complex and the central nervous system. So there could be any number of reasons for this illness. I understand your frustration. I started physio today and afterwards when at hme i lost the ability to walk. If you join the facebook group thereis a link on fndhope.org there will be others who can explain neuropsychology better. Some find it very effective
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