Help, No Diagnosis

Hello everybody,

I've been dealing with chronic fatigue for over a year, doctors haven't been able to find what is wrong, I would like to hear some suggestions about possible diseases to discard.

Thank you for your time,

David.

[bobbybobb]

Hi, I guess that could be a list of things. I have been struggling with chronic fatigue for four year. I was diagnoses with Fibromyalgia a couple of years ago and FND a couple of weeks ago. There are many conditions that might cause it. Do you have any other symtoms. Has our GP sent you for any routine test.

[Hidden in reply to bobbybobb]

Hello bobbybobb, thank you for answering my question, I really appreciate it, GP has ordered a serie blood tests, imaging (Brain MRI with contrast, CT Scan with contrast), EMG (2 times), all have shown everything is normal, I also have pain in four extremities, including tingling in fingers (both hands only), light sensitivity (I have to wear sunglasses most part of the day, even at night), perception problems too (I don't understand when somebody is talking), those are my main symptoms, and they have gotten worse.

Thank you, David.

[bobbybobb in reply to Hidden]

well David, I have found many people have lots of unexplained symptoms for many years before someone will actually find a diagnosis. some symtom's may get worse or better. you may develop new bizarre symptoms that are difficult to explain and understand. I know from my own experience that symptoms are very debilitating, frightening, stressful, painful and soul destroying. They strip you of the person you once was. But you have to remain positive.Sometimes the medics simply just don't know the answers. Has you GP referred you to any specialist. Maybe his is something you could discuss with him. In FND the structure of the brain is normal, but the signals are not functioning normally. They have done some studies with fMRI scan in disorders like FND ans FIBROMYALGIA, that do show changes in the brain to that of people who dont have the condidions. But this is a a research tool and not used for diagnostics.

[thinkin]

Hi,

It could be FND, but with the light sensitivity you could have aspects of migraine. You can have silent migraine, that is migraine without the headache. Try to see if simple things like aspirin help and also cut out potential triggers if you have episodes where it worsens. It can be that you can feel nauseous or your mood could drop suddenly too. When I used to have them I used to get episodes where people would speak to me and it was like a foreign language. It can effect concentration and leave you feeling spaced out.

There is certainly overlap between migraine and FND. People with migraine tend to have problems converting 5HTP to serotonin and the amygdala that goes wrong in FND works better with higher serotonin levels. So if someone does offer an anti-depressant don't be offended. It makes your brain work better and they have found that more neurotransmitters help, but they don't know precisely why yet.

One thing about migraine is, is that it significantly increases your chances of sleep apnea, which can lead to fatigue in itself, so if you are waking in the night it could be that you are not breathing enough. So it's important to tackle it even though it may not be the main thing that's going on. There are mouth guards that can hold your airway open and stop you grinding your teeth and clenching your jaw. Migraine can be triggered by the trigeminal nerve and you may not even realise that you are clenching your jaw in your sleep. I certainly didn't.

If they take your vitamin B12 levels ask for the actual levels, people with neurological problems tend to need a higher level and they will tell you "normal" if it's above 200 and we need levels of 500 and higher - any neurological disease or condition needs higher levels. Same with vitamin D too. Getting a GP to prescribe you vitamins when they see your levels as "normal" will be banging your head against a brick wall - even if you do have neurological symptoms. There are sprays that you squirt under your tongue if you have gut issues, gastritis etc. There is peripheral neuralgia that can cause numbness, tingling and burning and can happen with levels in the 200's.

The pain may be helped by magnesium and it may help the fatigue too, but it can take a while to kick in. There are a list of supplements that people have found useful on the FND Hope website under Healthy FND Living. Even though it may not be FND it may be useful to follow the advice on the FND website. Pacing, sleep routine, good nutrition may not seem to offer much, but they do actually help. Also optimising all your health even though it seems really minor.

I hope this helps. Please don't be upset if it does turn out to be FND. There are doctors who don't understand it and still treat you like the old "it's all in your head" or calling it conversion disorder - something that still persists despite research refuting it. If you find your neurologist going down the old route look at seeing one of the few FND specialists listed on the FND Hope website, but be prepared to travel and wait.

One thing to note that FND is that you can't push though it. If you tire yourself out being stubborn then you could end up worse. Just be very careful in case it is FND.

Hope this helps. You were not alone. xx

[Hidden]

Have you had a sleep study? Turns out my breathing stopped about 40 times an hour. CPAP has helped quite a bit; I still have days of debilitating fatigue, but it's not the crushing "near death experiences" it used to be.

[pickleweed]

It could be FND or chronic fatigue syndrome.

[Hidden]

Have all your autoantibodies been thoroughly tested and do you get copies of results yourself I wonder? All autoimmune diseases start with or cause fatigue but the worst offenders are often very hard to get diagnosed - Sjögren’s, Lupus, Hashimoto’s, Vasculitis for example,

I was diagnosed with Hypothyroidism about 15 years ago and put on Levothyroxine. I was never told it’s autoimmune, never asked anything or got my blood test results but even if I had I wouldn’t have known how to interpret them. As a child onwards and all through my 3 pregnancies there were many clues to autoimmune diseases such as sunlight sensitivity, episodes of alopecia, rhinitis, severe eczema. But I just battled, on oblivious, taking occasional courses of steroids, when all my problems would immediately resolve, only to return once if tapered off.

Then one day, in 2011, having recently lost my mum and already lost my dad to sudden and premature heart failure - I got food poisoning and several nasty viruses in rapid succession. A few months later I woke up with burning soles and a bitter taste, then both knees and both wrists felt fractured for no reason.

I saw several GPs, blood was taken and Rheumatoid Arthritis thought to be the problem. It was explained to me that this is also autoimmune. My body attacks itself.

Ever since then I’ve been taken reasonably seriously and believed.

Apart from by neurolgists (I’ve had 3) who seem to think that if it’s not a neurological disease then it’s functional. They have no way of seeing things 3 dimensionally apparently and two GPs have told me they are a strange breed all of themselves.

So, 15 years after being diagnosed with Hashimoto’s, 7 years after being diagnosed with RA, 2 years after being diagnosed with Sjögren’s and 4 months after finding I have significant degenerative disc disease I’m now being asked to accept that I also have FND.

Perhaps they study Neurology only to realise half way through that they ought to have studied Psychiatry instead? So they read the odd book and decide that this licences them to mix up both.

Then they decide that, far more important than choosing to believe each patient who presents with palsy or tremors or limb weakness - they could just re-invent the concept of conversion disorders? And get good funding to do a PhD in something that they decide to call Functional Neurological Disorder - even set up a website in this name - CBE for services to Neurology and psychology round the corner without having to do any real work at all - apart from see the patients who have real neurological conditions of course. But they tend to be hard work so let’s relegate them to the charities and their families and the appropriate respite and benefits and be able to get home a bit earlier and get off to more conferences with freebie 3 course dinners etc - spread the word about this new FND they have by invested invested so much in.

This way they can develop their antennae for patients, mostly women, who might otherwise be demanding of them. If they can find some formative abusive events and an onset of menopausal hormones then this is the absolute gift. If there’s been some alcoholism or a real diagnosis of something non neurological then that’s okay - it can always be called functional overlay.

What a wheeze, what a joy - no need to do any real hard core science - the gate is now wide open and fully funded to get rid of lots of their patients into undiagnosed oblivion. “Oh but .. well don’t worry because it’s not actually a really bad oblivion or a nasty no man’s land because it’s just functional- which is a positive thing for you too.. and we believe you - yes we honestly do (because we have had to convince ourselves first and that took a stretch of the imagination - so now believe you just as we believe ourselves)”.

This way they can now focus on further funded “research” into functional disorders and on telling all their colleagues and students ways to identify these functional patients by trickery rather than bothering with expensive and sometimes invasive methods of diagnosing or excluding.

Brain MRIs and lumbar punctures and EMGs are a last resort option for the suspect FND patient unless there are other reasons to run these - such as GPs or rheumatologists , psychiatrists or immunologists or cardiologists lurking in the background suspicious - medical colleagues who might see through this functional malarkey - need to watch out for them. Mind you they have their dodgier practitioners too - look at dear old Harold Shipman - so locate the like minded among them and there will be less chance of them being exposed as the emperor’s invisible clothes. They don’t have to use poison to kill ‘em off - patients may even kill themselves off first if the neurologist gets extra lucky!

Otherwise it’s game on to consign as many patients as they can get away with to this smelly dark pit of the non diagnosed. These FND patients won’t be able to clamber our of this pit to question or testify to the clinician’s incompetence because they have dug the pit very deep and it’s not the same pit as already exists for ME or Fibro or IBS or tinnitus -so hopefully no chance of any one coming along to spot all these deep pits full of miserable, suffering people. And if the inmates dig tunnels between them then they will just find others with more longstanding conversion disorders.

And the small amount of funding allotted towards their welfare keeps on rolling in to make this project very worth while - a kind of Guantanamo Bay for those who aren’t well enough or functional enough to escape or even claim disability benefits. Ticks all boxes - saves the NHS a fortune as long as they don’t try to access fully trained psychiatrists - and even then there are a few can be made to see it the neuro way. Saves the state a fortune so the politicians are on board too. Yay party time!

Sorry for rant - I’m turning Orwellian or Atwoodian here - but the journey has become increasingly dystopian of late.