Im new here. Just diagnosed last week. Been told i have a combo of Dystonia & FND. Was given websites to look at and sent home.
I found this forum and i need someone to help me understand.
Symtomps come and go.
Usually they follow a period of illness that always involves swollen glands in neck or under arms. Followed by chronic fatigue. Loss of power in arms. Tremor on LHS. Confusion. Double vision. Vertigo and horrific pain and muscle spasms.
So the question i want to ask after reading sites is...
Am i making this all up? Half the sites say its a real thing although kind of newly recognised but alot of Docs either dont know enough about it or are dismissive.
Then other things i read seem to contradict completely by saying its pretty much a mental health problem and it can be cured by talking to a psychiatrist.
What do i say to people? What do i tell my work? Im currently on sick leave and am struggling to return without having to take days off as the fatigue is so debilitating. What do i do now?
Please help. Im confused and bewildered. Thanks.
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I am still trying to get my head around all this but wanted to respond to your message as I know how unsettling this diagnosis can be and you sound worried.
I am sorry to hear about your horrible symptoms and then being topped off by this crap diagnosis which basically means no help.
While there are a few people busying away behind the scenes trying to bring more recognition and funding to research, it is currently little help to us...and yes, sent to the internet for help. Great isnt it?!
You are right, there is mixed info out there. I dont believe that the idea we can be cured by talking therapies holds for everyone. For many, like you say, there may have been illness or accidents preceeding their symptoms. So those archaic and mysoginistic ideas of 'hysteria' can just be scrapped in my opinion.
No you are not making it up. For some reason your brain/nervous system is misfiring and they just havent discovered why yet. My theory is that there are still tons of undiscovered diseases and no doubt this is one of them.
I just tell people I have a neurological disorder and leave it at that. I have still carried on pushing for tests and minimised the whole FND thing as I am hyper-vigilant about the stigma. Until I am able to have an appt with a specialist who can sit me down and explain it fully, i am more comfortable with having 'unexplained neuro issues'.
I assume you have had lots of tests prior to having this diagnosis? MRI/Bloods etc?
I seem to have had every test available. MRIs, lumbar puntures, epilepsy monotors, lymes disease and blood tests.
Actually decided to come off all meds myself due to wanting to see what my base line was after 10+ years of being given different cocktails of meds. Ironically i actually feel better OFF the meds as no longer have to deal with side effects. So only now take pain meds as required along with vitamins.
Still living with the pendulum of totally amazing days where i feel like i could conquer anything followed by the crash of fatigue and pain though.
I would love to say i have unexplained neuro issues but friends & colleagues knew i was going in for a diagnostic appointment and are all awaiting the outcome. So feel i need to be honest.
Im worried they then look it up online and basically accuse me of being a hypochondriac or making it up.
Dont get me wrong. Im totally grateful i dont have a scary neuro disease but my illness feels like a scary neuro disease and im basically being told ..quote " it is a thing, but its not a disease".
I agree that i also need to sit with someone who will explain it fully. I am still waiting for a follow up appointment and in the meantime i will just carry on in limbo with my new lables and get on with it.
It is causing a horrible internal dilemma though of what to do about work?
Do i go back on the basis of the "its psychological" diagnosis .. or do i stay off due to the " its a real thing, its your body misfiring" diagnosis.. as deep down i know that jumping back in will just cause the chronic fatigue to rear its head if im not managing my daily routines correctly and i will go back to square one..... or is that only what i have convinced myself???
Yes, yes and YES. I totally see your problem. I basically did nothing recently but my couple hours of work a day for 2 weeks. Just to see what happened. I literally bought ready made foods and showered and worked 2 hour shifts every day. After the 2 weeks I had no symptoms (though mine are milder than many on here). So I decided to clean my laundry. A tiny space, room for a washer and sink and 3 wall cupboards. After the couple of hours (including 2 breaks for hydration) I was just tired. Woke up the next day with a few wobbles, this morning more wobbly and getting tired again.
Do you just sit on your arse all day so you don't wobble? Do you carry on in pain and fatigue and looking like a drunk? Do you meet half way? And then how do you explain why you need a walking stick today, nothing yesterday and crutches the day before that? People are understandably confused. I am embarrassed because I don't make sense.
Do I need help cleaning my house and cutting the grass? I can do it, but I can't walk if I do it.
Sorry I don't have an answer. You will be the first to know when I do!!!! But I understand what you are saying!
In a way its almost weirdly reassuring to speak to someone in the same boat as me. I totally get what you are saying and no, people dont get how the symptoms can fluctuate so much, but i suppose no-one would until they have experienced it. I hope you find a good work life balance for the future.
I apologise for my blunt language before. I was feeling a bit frustrated. I am on day 3 of the second phase of my experiment. The second phase being, doing what I would normally get up to.
Day 1 I cleaned the laundry after my shift was cancelled. Day 2 had an easy shift (3hrs), did a little tidying. Day 3 I cleaned the bathroom and toilet and another shift cancelled, so i did more laundry and a quick shop.
By lunch time (Day 3 - today) I was on crutches again and exhausted. Made sure I got the laundry dry and away. So far, definitely shocked by how quickly I went down hill, and not sure i can do 2 weeks "normal". But I am going to try.
I have to drop my car off for service in the morning and walk about 500m home. That will be a test!!!
Yes I really see the problem regarding work. It is so tricky. I am fortunate to work very minimal hours and am an outreach worker. It means I can sit, stand, walk around. Have rests in between. I could never cope in a seated or standing job now.
I also work part time and get help from the council with my rent due to a low wage.
I also am on no meds, i was really keen to know what is happening with my body.
And the fatigue..oh my god. I am still convinced there is more wrong to be honest.
You have probably seen this (and i know it can be annoying when people send stuff - as if we havent researched it ourselves!) but this is the one I sent to my family. rarediseases.org/rare-disea...
Mic, thanks for that. All links greatly appreciated.
Its actually even almost reassuring to chat to someone who actually gets what im talking about because they are experiencing it too!! And yes... oh goodness!! The fatigue!!..
Its the worst and so frustrating when your mind knows what you want to achieve but your body wont cooperate!
On the plus side, a colleague came over to visit today and weirdly she had actually heard of FND and knew all about it and assured me it was a thing. So that has kind of settled that dilemma down a bit. It was nice that she was understanding and helped me go through what to do next so to speak.
Hey Christopher. Yeah. Spent a couple of days in hospital recently in front of a team of neuros who all specialize in different fields so they could all confer on diagnosis. Have been offered meds but was advised the side effects are just as bad as the meds i have recently stopped so have declined for now. Do have the option of beta blockers which aparently can help somewhat with tremors and also migraine which in turn will help with fatigue so am thinking thats the first step. Also have a problem with muscle spasms in eyes due to fatigue and have been issued a rather fetching eye patch much to the hilarity of my family. (Rolling eyes again ..but this time involuntary lol)
Thanks Christopher ... I had been attending a private herbalist who is allowed to prescribe it. But she didnt want to give me anything until i had seen neurologists, in case whatever she gave me helped my symptoms before i had a diagnosis, and she wanted me to have a proper name for my illness.
I will go back and see her now and see if i can try some.
It is a REAL problem. It is a mental problem but that does not mean that you are consciously creating the problem. I psychiatrist probably can't cure you, but they may help by giving something like an antidepressant. Tell co-workers that you have a brain disorder; the neural networks of your brain are not firing correctly.
I've had similar experiences and it took just under 3yrs for me to get a diagnosis.
I too was left feeling in limbo but something the neurologist said stuck with me "it can get better and in some cases go away all together".
I could hardly walk at the time and was on tramadol, anti spasm drugs, drugs to stop me peeing and drugs to stop the sick feeling and dizziness etc etc. Lots more too.
2yrs ago, I quit most meds, apart from the painkillers and adopted a vegan diet. I'm now off all meds and have no spasms or trouble walking, but still suffer bouts of chronic fatigue, with dizziness and back pain.
I have no choice but to rest at these times, which can last from 3-9 days at a time.
Everyone has an opinion about FND but the only one that really matters is yours.
Listen to your body and trust your instincts.
I didn't work for a few years because I couldn't.
I can say that now, I am fully functioning around 70% of the time, so that's when I work.
I'm not unconvinced that my body is hypersensitive and what I put in and on it, can have a much deeper effect.
I'm talking everything from food and drink to shampoo, deodorant and moisturiser.
I keep it as natural as possible these days and as a former marathon runner, am thrilled to now be able to run again, for 30mins at a time.
I have decided that I am going to be one of the people who recover fully.
In my experience many people just don't understand the condition.
I've lost, what Id thought we're good friends, who asked if I was putting it on. Painful stuff.
Nowadays, I put myself first and direct people to the FND website if they really want to find out about it cause I became really frustrated and fed up attempting to explain a condition I don't fully understand to people. You can print off some of their leaflets and hand those to people. I did that for a while too.
Keep the faith! It really can get better, though it can be a slow process, so be gentle with yourself, rest when you need to and don't push yourself too hard.
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