Could I haveFNDS

[cobweb]

I was diagnosed with fibromyalgia several years ago but I see to be at the extreme end of the spectrum. I receive help from the mental health team but no one seems able to say what's wrong with me. I am in severe pain always, shooting pains from my feet to my head. Migraines that affect my sight but several trips tp neurologists & more scans than I can remember but still nothing. I have cognitive difficulties, despite being fairly intelligent can't tell the time anymore or understand instructions unless they are shown very simply. I cannot think straight, handle money properly, cook etc but although severely disabled get only treatment from mental health team. I'm so depressed trying to live like this but no one can help. I receive no anti depressants, just pain killers.

Any suggestions?

[kotovasv]

Of course, it can be FND, which can include both pain and cognitive problems. Look at the website neurosymptoms.org, you may find more relation of FND to your particular symptoms. The question is, though - what are they going to offer you in case you do have FND? As the physical therapy is most probably intolerable for you, given your level of pain, the only thing they can offer will be the same mental team treatment. Antidepressants are widely used for FND treatment, but they really help only a limited number of patients and have unpleasant side effects, too.

[Hidden]

Hi cobweb, really sorry to hear of your ongoing suffering with everything. I too was diagnosed with Fibromyalgia a few years ago and I can tell you that cognitive difficulties are experienced with this. I also suffer with a rare type of migraine called Hemiplegic Migraine which gives stroke like symptoms for up to 6 months. My Neurologist has just told me (2wks ago) that due to my numerous MRi's being negative as well, that he has diagnosed me with Functional Neorological Symptoms, which i think is the same as FND? This was given after taking my medical history over 10yrs. I was advised to visit neurosymptoms.org by him, but have discovered that FND is usually caused by some kind of psychological trauma which doesn't fit with me so am still unsure if the diagnosis is correct? I have had 10yrs of severe health problems and suffer with physical disabilities as well, mostly right sided weakness and chronic pain in my back, hips etc.(that's probably my Osteo). My cognitive problems are awful and like yourself find running a home very difficult.

I find most GP's tend to go along with incorrectly diagnosing mental health problems when all our tests come back clear, which makes us feel depressed being labelled like that!!! Luckily I am a very strong person and will push myself to do things and get out of the house. I also use homeopathic remedies like meditation to relax me, which takes the edge off of the pain.

My Rheumy that diagnosed Fibro, told me this is a very nasty thing to have and stress makes it even more severe.... I would think the majority of your symptoms do fit with that but only because I recognise in myself what you are describing.

Are you due to visit another Neuro soon, if so, perhaps you could ask about FND?

[Heidi4 in reply to Hidden]

Hi fnd and fibro are under the same group, both have unknown causes, it's all to do with the wiring of the brain.... Structurally you tests come back normal, but pain, fatigue,weakness etc are present, and cannot be fake under a good neurologist..... Your brain receives wrong signals in both fnd and fibro, it's not just psyhcological, it can be from physical trauma, physically pushing your body for long periods, and other unknown reason, x they are both classed as a functional disorder. X

[VivienneWaterworth]

You could have FND on top of your fibromyalgia and headaches and everything else. Who knows? It's a really difficult thing to diagnose when you don't also have muscle weakness and/or seizures, however I think when you have had the number of tests that you have had, it's time to change tack for a little while. There are a couple of Facebook pages that offer a lot of support. You can read the stories of others there, and also ask questions...you will probably find someone else with your symptoms very quickly at the Functional Neurological (FNDHope) / CD group.

For what it's worth, FND is an umbrella term used to describe any 'Functional' Neurological disorder, as opposed to an 'organic' one that shows up on scans. That being said, FND often shows a reverse pattern on fMRIs and some other scans, compared to the organic version of the same condition...eg Distonia and Functional Distonia have the same two areas affected, one over active and one under active...but they are opposite for the Functional version. Not sure how many neuros know this.

The other interesting thing about FND is that a significant number have NO trauma or emotional component in their condition. Some have had an accident, woken from surgery or just woke up one morning with it. Neurologists are recognising this more and more, and have therefore experimented with a variety of labels that remove 'Conversion' (ie converting stress or trauma into symptoms) from the label. Even the latest DMS5, the bible of the American Psychiatric Society, removes emotional components from this condition.

Functional Neurologists know a lot more about this condition than traditional neurologists. There seems to be two types, traditional neuros who have focused in this new Functional area, and chiropractors who have spent an extra 3 years studying neurology at a Master/Doctorate level. This second group appear to have solutions that traditional neuros don't have, but they may be expensive and may or may not be covered by insurance.

Also check out fndhope.org - there is a lot of information and plenty of resources there, including something about fibromyalgia, e.g. new advances in discovering what causes the pain in the extremities (I can't remember the details as they weren't relevant to me, but I think it's due to a special type of plaque in the arteries in the hands and feet) and how to ease the pain (keeping your hands and feet very warm - or was it cool - I think warm). Sorry i can't remember the details, but worth looking up.

[cobweb]

Thankyou for your replies. I have now looked at the website as suggested as you will understand I only put in the bare minimum in my original question. I had a very bad fall down the stairs which was followed a few weeks later by a TIA with loss of sight , after which the migraines became monumental! I had been diagnosed with ME years earlier which seems to have been forgotten. I have very weak muscles, particularly on my left side, though bizarrely it's my right leg that gives me most pain!

I have been told that no further diagnosis can be made until I see another neurologist. I suppose that will mean another MRI! I don't expect any miraculous cure or different treatment but I feel that I need some validation. I feel like everyone thinks I'm making it all up! This pain, weakness and distress are very, very real! Each time I have a new scan or test, I dread hearing the words it's all clear it's just your fibromyalgia. I feel like telling the medics - no more tests! What's the point of putting myself through it?

[kotovasv in reply to cobweb]

I understand you very well, I was told by some doctors that my symptoms are "subjective", and with the same eagerness I looked for their validation. Like you, I hate MRIs and other tests, because I dread hearing once again that "everything is normal". It is anything BUT normal.

[Huggie_Bear]

Dear Cobweb

Your condition is real. There is still so much that Doctors and researchers don't know about these things. I have episodes of continuous abdominal pain that normally last about 3 weeks and often, the pain-killers don't touch it. This is nothing compared to what you have to contend with, but I know that feeling of frustration when all the tests come back "normal" and you are left with no known cause or treatment and not knowing if it will ever stop or when it will occur.

Doctors are often quite dismissive of things for which they can't find a treatment or cause. I think it is a source of frustration to them and perhaps annoyance that will all their great intelligence and learning, they haven't got a clue what to do. Possibly some of them even believe that if they can't diagnosis it doesn't exist and isn't real. I suspect if they thought too much about how every patient like you is suffering, they would be overwhelmed and couldn't continue doing the job they do.

I often think it would be great if there was an instrument which could demonstrate the level of pain and emotional distress that someone is suffering so people like you and me could get that validation that we need and the compassion that is deserved.

At least among our fellow sufferers we can offer that validation and compassion to one another.

I pray that you find relief from this awful debilitating illness and the support and compassion that you deserve. 😽