Newly diagnosed

[NatureMakesMeSmile]

Hi all. I'm new here. I've had a neurologist diagnose me with fibromyalgia last year and a different neurologist told me this year that my symptoms are stress related (after I looked at his write up I saw FND). I know have a third neurologist who wants me to have an MRI which of course isn't scheduled for another week. I am having difficulty speaking, weakness and pins and needles in my right leg and foot, and exhaustion. I read up on FND and sounds like that's what this could be. It's just so difficult right now not knowing. I'm getting really frustrated with myself and getting sad in general, and there's no one to talk to, you know?!?! Anyone have similar experiences?

[Denise1968]

Hi, welcome

I know what you are going through. You just want some answers and a definite diagnosis. Your symptoms sounds similar to mine. I don't have trouble speaking but I do have trouble thinking what I want to say and sometimes it doesn't come out right how intended. Is yours the act of speaking that's the issue?

My problems started after the covid Vax and I'm undiagnosed as in UK docs aren't interested. They don't understand the condition unless they are a neurologist. How long have you been having issues? Do you have weeks of being normal then a couple of weeks with the symptoms?

[NatureMakesMeSmile in reply to Denise1968]

Hi there. My speech has gotten much better over the last couple of weeks. It's almost like a stutter. I have trouble pronouncing consonants often, and during vowel sounds It's like extended. I knw what I want to say, though. My walking has gotten better too, but today especially there is a lot of nerve pain in my foot. I'm on day 18 of this occurrence. Last time this happened was over a year ago and only lasted a few days. Sorry you're going through this. It's a hard road to travel isn't it?

[Brokendeer]

Hi firstly you should remember that a lot of Neurologists are quick to jump on the bandwagon and diagnose FND, when they really have no clue what the symptoms mean. And a lot believe that Fibromyalgia is part of the FND Umbrella of conditions anyway.

However, you symptoms sound very much like Multiple Sclerosis, which can only be diagnosed after about 3 years of monitoring by a Neurologist to determine through repeat MRI and observation of progression if it is not. Make sure they have ruled out MS totally before being lumbered with an FND diagnosis, because one FND is on your file, most medical professionals will fail to listen to your issues with symptoms and indeed any other medical problems from that point.

Good luck

Look for the calm in the Storm!

[NatureMakesMeSmile in reply to Brokendeer]

It was so frustrating at the hospital. Just because I mentioned that work is a little more stressful than normal...bam. MRI was cancelled. Even though I said I don't feel stressed out they wouldn't let it go.

[Brokendeer in reply to NatureMakesMeSmile]

Hi know the feeling of not being understood.

What you need to do in a calm, matter of fact, kinda way is explain to your medical professional that everyone has high stress levels these days what with covid and cost of living etc

BUT they do not have these symptoms, whereas other people who know about MS have suggested these symptoms are similar to MS and therefore should be ruled out with an MRI. This would avoid any further delay in medical support that might be available and to get some helpful answers about your condition, to avoid getting unduly stressed about not totally ruling MS out!

Good luck

Look for the calm in the Storm!

[padraig34 in reply to Brokendeer]

You are right.Most physicians look through your history now and quickly make a diagnosis and stop listening.

I had the problem that I took a few extra pain pills one time and from that day on, that is all they focused on

They immediately labeled me as a drug addict, which, in their opinion, was causing all my symptoms.

This annoys me and hurts my feelings

I did take a few pain pills, so what? Does that mean I am a bad guy?

I hate the way everything all info is accessible now. Every time you go to a doctor

[Brokendeer]

P.S check out the MS site and compare symptom mssociety.org.uk

Look for the calm in the Storm!

[Jofisher]

I have both fibromyalgia and functional neurological disorder. I would recommend an excellent organisation for you to contact in the United States is check out this site fmaware.org they’re brilliant

[Fighter_B in reply to Jofisher]

I had a car accident four years ago that brought on the functional movement disorder. I went to probably 20 doctors without anyone knowing why I couldn’t walk and had severe shaking in my legs and torso when I stood or tried to walk. This is insanely frustrating, and I’m sure many of us can relate to that. One doctor I saw said that I had fibromyalgia in my leg because of a lot of nerve pain and weakness. Now I think it’s all part of the FMD because the symptoms are so similar, but who knows…

[Jofisher in reply to Fighter_B]

It is extremely frustrating so many doctors don’t understand or acknowledge or recognise what we are going through and many think we are putting it on. Why or who in their right mind would do this it makes no sense but because so many doctors aren’t knowledgeable it suits them to think it’s our fault in someway or where lazy and don’t want to work etc etc it drives me crazy. But one day they will know more and I just hope that day will be sooner rather than later.

[Fighter_B in reply to Jofisher]

Agreed. I’m on workers comp and it's a nightmare dealing with them. I’m so stressed out already with my body and pain, and then they add on so much more stress. It’s one of those things that no one can truly understand until they’ve experienced it. ❤️

[Jofisher in reply to Fighter_B]

100% it’s hard take care

[NatureMakesMeSmile in reply to Fighter_B]

Amen! The hospital sent me home with ways to relieve stress...ok...well how about we figure out why I can't walk right before you tell me to stop stressing!

[Fighter_B in reply to NatureMakesMeSmile]

Lol. Makes too much sense!

[NatureMakesMeSmile in reply to Fighter_B]

Exactly! There are so many illnesses that sound so similar. Hope you feel better!

[Fighter_B in reply to NatureMakesMeSmile]

You too!

[210272]

Hi NatureMakesMeSmile,It's always a 'red flag' for me when I hear that someone saw FND in their neurologist's notes, rather than having the diagnosis given - and explained via the positive signs - during the consultation. In the UK we are not meant to learn about diagnoses in clinical letters and this is one of the reasons why notes can be redacted. Did the neurologist provide you with a treatment plan, either during the consultation or in the clinical letter? A good communication of the diagnosis and the potential reversibility of symptoms is considered important in the FND world and if that hasn't happened I would ask your primary care doctor to look into this for you. I am not saying your diagnosis is wrong, but do think it might not have been given in a way that meets 'the gold standard'.

The symptoms you describe are fairly common amongst people with migraine (including 'silent' migraine where there is no head pain, which can make it harder to diagnose) and I agree with what others have said here regarding Fibromyalgia coming under the FND umbrella - IE some neurologists tend to 'lump' rather than 'split' and once you have one dx that's thought to be 'functional', it's all too easy to get another one.

Meanwhile I'd take it as a good sign that you've had some improvement recently and that you've had remission in the past Nature makes me smile too and our systems love smiling

[NatureMakesMeSmile in reply to 210272]

No, the neurologist told me to look into ways of reducing my stress (which I tried to tell him I don't feel stressed) ans suggested physical and speech therapy which I am still looking into. I'm upset with him for exactly what you said...the gold standard. Why didn't he just tell me what he wrote in his notes. I thought I was going crazy because I hadn't even heard of FND until I read his notes a week later.

[padraig34 in reply to 210272]

Hi . I am in the UK, Sunderland.

How do you get notes redacted?

Because I ran out of pain meds a day early, they had me labeled as a drug addict.

Now that is all any doctor sees.

After this, all my symptoms are due to drug abuse in their eyes.

I am very annoyed

But the more you disagree, the worse it makes it.

we are only in there 10 minutes anyway and at the minute you are lucky to get past the receptionist in the UK at a GP surgery

[210272 in reply to padraig34]

Hi padraig34 - I'm in the UK too and yes, it can be challenging for patients when doctors only have time to focus on one issue and can't see past it. It's difficult to get notes redacted but you can ask to have a note put on any clinical letters/GP notes etc to say that the content is holding you back in your quest for better health and that you would like it to be disregarded by your current and future health care providers. It might be worth working with the practice manager to achieve this. If you let them know that you would much prefer not to have to take pain meds and ask if they have any evidence based alternatives (eg treatment with a TENs machine) you would be interested in trying it, that should help them to realise that you are not a drug seeker and are striving for better health. I'd have a good vent before you contact them to get the - entirely understandable - annoyance out of your system first, so you can focus on the purely pragmatic issues.

From the other side of the fence I know there are many GPs who are finding it challenging to do their jobs properly these days - and not just because of COVID.

[Starrynightz]

I was diagnosed with fibromyalgia at age 23, I’m now 36 and have a list of things I’ve been diagnosed with since. My rheumatologist explained it to me this way, fibromyalgia is a syndrome, it’s diagnosed to describe symptoms you are having but it’s not it’s own disease there is typically a cause. Sort of like high blood sugar is typically diabetes or it could be some other cause. Over the past 15 years I experienced decreased function in multiple organs and body systems. Fibromyalgia is not progressive so again the widespread chronic pain may be diagnosed as fibromyalgia but it’s because tests have not yet found any other cause. Reference ranges for tests have not been updated for years. So many diseases go undiagnosed because of it. My rheumatologist said he has no doubt I have an autoimmune disease but the problem is I’m generally young and these tests often do not show positive results until someone is very sick, it doesn’t take into consideration quality of life at all. I would recommend finding a good rheumatologist in your area. Neurologist typically don’t diagnose fibromyalgia and FND is another disorder diagnosed to describe symptoms that cannot be linked to a disease process.

[padraig34 in reply to Starrynightz]

Yes. I have been misdiagnosed a great many times. Also have had several surgeries I probably did not need, including 5 spinal fusions

Maybe partly my fault because I have been trying to find a solution to symptoms for many years.

I started off in a psychiatric ward with anxiety and depression which I believe I converted into physical problems.

But now the surgeries themselves have created more problems

It never ends.

My new symptoms are probably real.

My abdominal muscles are paralyzed and atrophied

I think I caused this my self. At least that is what my mind tells me.

I feel guilty about my condition and wonder if I am being punished.

Can FND cause this?

I don't know what to believe any more

[NatureMakesMeSmile]

I love all the good thoughts from this group. It's really great to have. I'll be honest...my MRI is tomorrow and I'm scared. I'm scared they're going to find something wrong, and I'm also scared that they won't find anything wrong. If they don't find anything wrong then what is causing my symptoms and how do you treat it? This is a lot to register.....

[padraig34]

Yes. I feel the same wayI constantly spend all day on google putting in symptoms which is driving me nuts

I am so depressed I don't know what to do

I have a long history of surgery but it never made me this low

I hope you get to feeling better

[Brokendeer]

Firstly, there is nothing wrong with wanting your life to be as normal and pain free as possible. And if that meant going the long road of several surgeries; which presumably your Surgeons believed would potentially achieve this - then it was their medical opinion and decision to take that action. Not yours at the end of the day - so do not think you talked them into anything. You will find they have a very high regard for the oath of `first do no harm', because they are terrified of doing the wrong thing and possibly getting sued these days.

Secondly, the issue of your health records. I suspect most of us have something annoyingly or inaccurate on our medical records we all wish was not there (I certainly do) - but remind yourself we are all human, we do make mistakes on both sides and we have to ignore what we cannot change as best we can. If the awkward recorded issue does get mentioned, try tackling the subject from a different angle:-

For example: you say they have labelled you as a drug addict because you took too many painkillers one time. I notice you did not have one single doctor ask why you had so much uncontrollable pain you needed the extra pain relief at that time? Not one has sent you to a severe pain management clinic or offered alternative pain relief medication to the obviously ineffective type you had at that time? In other words, tell any new doctors calmly that you were let down by lack of support from the medical profession during that period and had to manage the best you could yourself temporarily.

Thirdly, the body is a remarkable thing, it can adjust, adapt and reroute systems to maintain and survive after many different injuries or circumstances (not always perfectly but still) - nerves can regrow, neurones can reroute or borrow what they need from different parts of the brain. These systems are automatic, all you have to do is encourage the overall wellbeing of good nutrition, everyday necessary activity and a more positive assurance to yourself that things have the potential to improve (with or without medication)- but all this will take time, there is no quick fix where the body is concerned.

There are Buddist Monks who spend years of physical fitness and mental learning to put their minds/bodies into meditate states to control their breathing, heartrate and pain thresholds; they can carry out extraordinary feats, like laying on a bed of nails with weight on top of them or walking over hot coals, putting their minds into REM waves while still awake etc - and they come to absolutely no harm! Clearly no one in their normal lives needs to go to those dangerous extremes to prove the power of meditation/body conditioning, but it does demonstrate vividly the resilience and mystery of the human body. Even without conscious control it takes over 200 muscles to coordinate at the same time in the human body while upright to take one single step forward and that took millions of years to evolve properly.

Allow yourself the luxury to take time and let nature repair at the right pace for you and this will keep all the vital systems ticking over nicely.

Ample patience is required with FND, acceptance of daily limitations and not thinking the medical profession has all the answers or a cure (in all probability they don't, they are not yet advanced enough in science to understand everything in the human body) .

Acceptance of the whole medically unsupported FND situation, is something I personally still find the hardest thing to acknowledge even 14 yrs on!

Look for the calm in the Storm!