Frustrated about "anxiety"

[Van604]

I saw a new neurophysio yesterday and she kept trying to put everything down to me feeling upset or anxious (which I wasn't). I tried explaining to her that I've been like this for years now, and that I saw a psychologist and physio for two years who didn't believe that my physical problems are psychological. It seems like, when I see any medical professionals who DON'T specialise in FND (GPs, physios, physiatrists, massage therapists neurologists and even psychiatrists) they treat me like a normal human being and say I don't have psychological problems, but can identify the physical problems. But when I see FND specialists (neuropsychiatrist, neurophysio), they try to gaslight me into believing my physical problems are caused by "emotional distress". Even when I explain - and even demonstrate - that my symptoms are brought on by a combination of physical activity and lack of sleep. Even though I only have symptoms on one side, where I have had 2 surgeries, a broken ankle and broken wrist, and a hard fall on my side, and now have significant fascial pathology and ribs that are severely out of alignment. The neuropsychiatrist tried, and failed, for two years to try to identify my "emotional triggers". Because they weren't there - I only collapse when I'm exhausted. But it's like talking to a brick wall - this is what they believe "these patients" are, and no amount of evidence to the contrary seems to make any difference. Sorry for the rant, but I'm really sick of being treated like this by the very people tasked to help me, who aren't.

[MONIREN]

I'm sad you got treated like that, they want you to fit in their preconceived box. I know my symptoms are worse when I'm tired, but that's because I have to concentrate on what others do normally, when I'm tired I can't focus. Take care!

[Van604 in reply to MONIREN]

Thanks. I guess I should just stop listening to these so-called "experts" and listen to my own body instead. That's what I was doing before I was diagnosed and I was functioning a lot better!

[Westie_1]

Hi Van604 I totally understand what you are saying and the frustration that goes with it is really annoying. We all know our own bodies best and I’m fed up being fobbed off it’s not fair to any of us to be treated this way. So I am sorry that you went through that recently. The best thing any of us can do is just listen to our own bodies. I slow down when I get tired as that’s when my face, speech and walking go wrong. So I am now trying to get used to this side of me. I don’t have much faith in the health professionals anymore if I know they are just saying stuff to get us out their office.They’ve just put me on a CBT course?! I truly hope you feel better soon Van604. I’ve been listening to some good meditation music on YouTube and that is actually helping me feel better?! I know meditation does not suit everyone but if you have time give it a go. Sending you lots of positive energy and hope you start to feel better soon Xx

[Van604 in reply to Westie_1]

Thanks. Yes, I find music helps - I play music with a strong beat in my head when I'm walking and it helps with my coordination. Thanks for the kind words.

[Shelford24]

Sorry to hear this, maybe its worth visiting an Osteopath? They will concentrate on you and your wellbeing without FND being mentioned. It's extremely annoying when they put everything down to anxiety rather than admitting they don't have a clue!

[Van604 in reply to Shelford24]

Thanks. Yes, I have had best results with alternative therapies. I did really well with massage therapy - when I told my neuropsychiatrist he said "that's no good - you may as well give me the money"! Needless to say, I'm not seeing him any more...

[Shelford24 in reply to Van604]

I'd say I'm shocked, although I'm not surprised!! I don't blame you!

[Yasmin-C]

I really sympathise with you. I had a telephone appointment with a neuropsychiatrist last week from the supposedly top hospital in England dealing with FND. She spent most of the time talking about my 'depression' (who wouldn't feel down after losing most of their life and income???) and suggesting what pills might 'work'. I had to tell her that this only began after a head injury. I also had to tell her about this website!!

Some 'expert'!! But re the tiredness, I have also been diagnosed with ME/ Chronic Fatigue and my symptoms get worse when I do too much.

It's a tough road but maybe part of the gift is not taking medical 'expertise' on FND as the 'law'. I read somewhere on this site that the initials stand for F...... No iDea. Because nobody seems to have an idea.

Good luck with your journey.

[Van604]

Thanks. I think I would appreciate it more if they would just admit they don't know, instead of insisting that it's something that there is no scientific basis for. I would have more respect for them then.

[Brokendeer]

Hi I am a long term Motor FND sufferer, done all the rounds of medical professionals and Inpatient Rehab, medications - yes, I too have actual physical biomechanical problems which yes, do not seem to be factored in with any doctors visit, they all stick to the official definition of believing it's `all in the mind' and a mentally driven condition. Truly believe that if I was to go to the doctors with an obvious broken leg - they would say it was psychological!

But... a few years back there was a TV Program in the UK about a GP who visited various people with various difficult medical problems and he stayed with them to see how their symptoms affected their life, then tested, changed things and tried to make their life better.

Bear with me here; there was one guy who was on dangerous levels of painkillers because of constant back pain. They took him to a specialist Muscular Skeletal Physiotherapist in London (no experience with FND) and while chatting about any previous serious injuries, they discovered that when the back pain guy was younger he had been beaten up and only suffered a broken jaw! Nothing to do with his spine or legs etc.

This broken jaw though had caused a whole cascade of bad body positional compensations and misalignments over the following 20 yrs and was causing his spinal back pain. The Muscular Skeletal Physio put him on a strict set of specific posture correction exercises for walking (he was not even putting pressure on his left foot?), standing, sitting, computer work etc. And the guy improved enough to reduce his pain medication to a more healthy level. Though critically never stopped pain meds altogether!

Now as remarkable as this 3/4 recovery is, clearly this speciality of Muscular Skeletal Physio is not offered to FND patients because there is this medical profession block on thinking FND is a biomechanical driven condition. Currently what is offered via normal Physio or Neuro Physio's frankly is okay if you have MS or a Stroke, but I got only denial of any physical obstacles from mine- as they followed the usual system of classing ALL my actual physical problems as mental insufficiencies, thereby setting ridiculous, unrealistic and unachievable goals (who can judge if you can walk 1m a day and then set a goal of 5m per day or insist you repeat a set of physical exercises 5 times each, daily - now that is crazy!) All very discouraging and disheartening!

So basically keep finding your own bad triggers and follow the 3 A's = Adapt, Adjust, Accept.

Pace yourself to what works for you and that is what I have found is the key to getting anything done.

Remember no one without FND will ever understand the debilitating and mentally `uncontrollable' condition.

Look for the calm in the storm.

[Van604]

Thanks - this is really interesting. I agree the pacing is the most important thing (and the hardest to do because I always want to do more). I'm going to look into the posture correction thing because I'm not using the left side of my body either. I can tell by the wear on the soles of my shoes.