Functional Misery Disorder: Hey folks... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Functional Misery Disorder

jonthompson
jonthompson

Hey folks,

I have recently been diagnosed with the Functional Misery Disorder often called Functional Neurological Disorder. A condition that ruins your life forever, i am still in shock about this and been thinking alot about suicide. However i am getting support from my GP.

People keep telling me it is to do with depression and the brain signals changing. However i have burning sensation in my feet and twitching all over the body. I also have an overactive bladder. All serious and worrying symptoms, which makes me wonder if there is any inflammation in the body or anything to cause this. The symptoms are similar to MS. With there being two brains in the body the stomach and the brain, it makes me wonder what is happening.

Has anyone used any herbs for brain health or anything such as diet changes that may have helped please? Has anyone has FND that stayed the same, or does it get worse with more symptoms progressively appearing? Does anyone please know what research is ongoing regarding this condition and who the main researcher may be?

Thank you so much for any help you can give. Take care folks and thank you for listening. Jon

14 Replies
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Hey.I was diagnosed in January this year. After 7++years of going to my Dr and basically being ignored. Well it gets worse as time goes on. I'm in Scotland. I am struggling. I can understand when you mentioned suicide. To be honest I'd rather not be here. I tried CBC oil. It made me a bit spaced lot and constantly feeling sick but it could have been due to the medications that I take?? Maybe they don't mix well????

Momofson
Momofson in reply to Cindy391

All CBD oils are not created equally! Some don’t help at all. Look up what brands have works for others. I’ve not used it but have heard many people get great relief from inflammation with it. Turmeric with black pepper is also very good for inflammation. Lots of info on the internet on that.

Hi Jon and yes Functional Misery indeed. That said, not all symptoms are caused by depression or mental health stuff, some arise against a background of other pains, illness and fatigue.

I dont have many tips for you in the way of supplements but I know others here will do.

Sending you the latest talks I know of in terms of research. A drop in the ocean I know but it all helps! Mic

DrDavid Perez on some of the latest research in brain changes in FND

youtube.com/watch?v=h9hQzFO...

Professor Mark Edwards Q & A World FND week 2019 youtube.com/watch?v=aYJRsDC...

Professor Jon Stone youtube.com/watch?v=sloHkUy...

Specialist physio Glenn Nielsen youtube.com/watch?v=846mA3q...

I have also been researching modern pain science and central sensitisation which makes sense in my case.

instituteforchronicpain.org...

instituteforchronicpain.org...

Thank you for your replies. I agree with Cindy i would rather not be here, i have no life now. My quality of life has gone from 100% happy to 100% unhappy, it is terrible.

We really need to come together to try get more funding for FND, whether it is contacting news agencies, doing fundraising events. We really have nothing to lose in trying, has anyone any ideas to try and raise some money, it would be great to hear from you?

I appreciate all your responses above, the videos were very useful, so thank you again for posting them.

Mic67
Mic67 in reply to jonthompson

Talking of news agencies, apparently Lorraine Kelly is discussing FND at 8 30am tmw on ITV.

Hi Jon,

I was diagnosed 3 years ago during a 3 month hospital admission after I naively told them my mother had died in the February of the same year. They automatically jumped on that regardless of whether that event had had any impact on my life and the fact that I had been having symptoms for almost a year prior. I am now on a veritable cocktail of drugs and in therapy.

I have actually just been to my GP pending submission of a complaint re a recent neurology appointment which was traumatic to say the least. I had been with an FND specialist when I was in the neuro unit at QEUH (Glasgow) but haven’t seen her since I was discharged. It is utterly soul destroying trying to navigate this ‘diagnosis’ and have a rational, constructive conversation with someone that can help. I completely understand how frustrated you are and the suicidality that accompanies it. I’m there with you.

However, what I can tell you from my own experience is that it can get better. I was completely unable to function - walk, talk, read, think, toilet, dress, etc and that was before taking into account the head to toe pain, tremors, spasms, and seizures. Today, I am back at work part-time (NHS) and able to mobilise with crutches although I still need to use the wheelchair for anything more than a 15m stretch. I am still in constant pain but it has become manageable with the medications. I still suffer frightening brain fog although it is no longer a ‘constant state’ but now more intermittent. I manage this sometimes with aromatherapy - essential oils in little sniff inhalers that I carry around. I am currently trying to combat the fatigue with this but haven’t found an effective recipe yet. It is worth a try! However, since I have returned to work I have been spending 4 days in bed in order to be able to work 3 days but I can definitely say as of this moment that it is improving and has been for a few months. I think diet has a lot to do with this. I discovered 2 years ago that meat caused my pain to flare like the fires of hell and since I have become vegetarian my pain levels have definitely been more consistent and I am not caught ‘off guard’ nearly as much. I still use oramorph for break through pain (not that it’s particularly good so don’t use it unless you really have no choice!!) but these episodes I can pre-empt as they are usually caused by over exertion - mainly on work days. Following on from that I have been researching (when my brain allows) a vegan diet and I believe there may be something in it. It’s not easy (or cheap) to implement when you’re disabled which is why I’m not fully vegan at the moment but I have been making gradual changes where I can while I try to work out how I can properly & safely manage to ‘cook from scratch’ in my kitchen and I believe these gradual changes are responsible for my physical improvement over the last couple of months. I am very keen to fully implement a full vegan diet as I really do believe there are benefits there. I used to be very active (martial arts instructor, marathons, etc) and ate a super clean diet - I was extremely healthy, fit, and strong. I let that diet slip over time due to other work commitments and I do wonder if that’s where it went wrong. There are numerous reasons diet can, and will, destroy your health. Many of which we all know but there are hundreds of research papers out there on the impact of diet on health. For some out the box thinking though see plastics! I have a medical background and have long been a proponent of healthy eating (inc the plastics reason before it became headline worthy!) so sometimes get angry with myself for not taking my own advice but that is negative thinking and unhelpful. I try to focus on the things I CAN do or try in order affect change.

Something I struggle with greatly (and can’t overcome) is temperature regulation. I have found that I am unable to regulate my body temperature within a few degrees tolerance. Winter and autumn have now become favourite seasons for temperature comfort albeit deadly in terms of mobility! Lol! The heat amplifies my symptoms immeasurably so I struggle when the temperature rises. I use lots of fans! They are my best friends when the shiny round thing in the sky comes out to play (even in Scotland! 😜).

The point is that there are things you can do to make life easier. Is it easy to change your lifestyle to accommodate these things and your illness? Hell no! Is it possible? Yes it is. Am I still suicidal at the thought of a disabled lifestyle? Yes I am but I am rational about it and won’t follow through unless I have exhausted all options. I have gone from an immobile waif lying in a bed screaming in pain 24/7 to someone who resembles the person I used to be. Am I still horribly depressed about my circumstances? Yes of course I am but I also know that if I don’t try to fight it I’ll have let down the strong, independent person I used to be. I have reclaimed my independence (I live alone) and hold it stubbornly dear! It wasn’t, and isn’t, easy but it is possible and it continues to get easier by a fraction every day.

That’s just a snippet of my experience and it is different for everyone. The most important thing I have found is not to let others set expectations of you in terms of how you feel and what you can do. You are the only one who know how and what you feel - and those feelings are valid! Don’t forget that! Find what is important to you, what you value, what you want to achieve and set tiny goals in order to do it. Don’t set yourself up for disappointment by expecting big leaps but small daily things will lead to a day where you suddenly realise you’re better than you were X/time ago. It sounds hopeless and it’s a horrendous thing to go through but you are your own master and stronger than you think you are! If you believe anything at all, believe that! It’s what will get you through the hard days.

Take care

V x

Momofson
Momofson in reply to ViktoriaC

Have you had a complete check of your thyroid, including checking the antibodies against your thyroid? You mention body temperature control and that is a major symptom of having hypothyroidism! Your thyroid controls almost everything in your body. Do not let the doctor tell you that your thyroid is fine if they haven’t checked your antibodies TPO and TG. Also the TSH should never be over 3 and even better lower if you have symptoms or if you have a family history of thyroid disease or any autoimmune diseases.

Momofson
Momofson in reply to ViktoriaC

You are right, you can never tell a doctor that you feel bad about anything! They will blame all symptoms on depression!

I do not believe in FND, it’s a scapegoat that doctors can use when they don’t have an answer. See my answer to Jon. There is a lot of help out there for anyone that looks hard enough. If your doctor isn’t doing there job, go to a different doctor!

Jon, do not give up hope because you may not even have FND. They are trying to tell me that my son has FND, so I am going to FIND a different doctor that will actually look into the reason my son has problems and not just label him with something he doesn’t have! There may be some people that have FND but I think it’s a lazy way to put people in a category where the doctor gets to be finished with them because they can’t figure out their real problems!

Have you had the Mayo Clinic test for autoimmune encephalitis? It is a simple blood test that many doctors do not know about. Any doctor can have your blood drawn at any Lab and then have it sent to the Mayo clinic Lab in Rochester Minnesota to have it analyzed. That would be a very important test for the symptoms that most people have described as FND. Some people show the antibodies and some don’t but it’s the best test they have so far. They also know that the reason some people don’t have an antibody is because they don’t have test yet for many antibodies, but it’s still a very good test to have. It can give many relief.

They used to think that autoimmune encephalitis was rare but are finding now that many people have it and a lot of people with depression have it too. Much is being understood now about this by the large hospitals that study it but very few doctors are in the loop about it yet. They also believe it has a lot to do with many mental illnesses. There is a lot on the internet, so look it up and see if you fit the symptoms. There is also an autoimmune society page with much inflammation. You should also have a complete check on your thyroid, including the antibodies TPO and TG, as it controls many systems in your body and can cause depression and many other symptoms. Do Not let some uninformed doctor put you in a category where there is no hope!

There is a reason why your body is reacting in pain and symptoms and is more than likely not FND! Go FIND a doctor that will give you real answers and real solutions! It’s also very important to eat right especially when your sick. Many symptoms come from inflammation and from the gut. Eat lots of fruits and veggies, also I believe some meat is important. Try taking turmeric with black pepper everyday for inflammation. Many people swear by it. Look up on YouTube the dosages that work for most people. Do not give up!!! There is an answer for you but you’ll have to find a doctor willing to help.

Lions mane mushroom has been shown to have neuro regenerative properties - kratom is known to be a wonderful opiate substitute- and cannabis is a neuro-protectant. I have RSD

I wanted to say my thoughts are with you jonthompson. I hope that you find this forum supportive, and have people around you who understand (or try to).

On a slightly separate note, Mic76, thanks for posting the webinar links. I managed to miss them all live!, so that’s really helpful. I watched the Jon Stone one last night and was struck by how little I felt he really said. On the subject of pain he basically gave no help really. I can’t help thinking that if fnd had an obvious and known (currently) physical origin, ‘traditional’ pain remedies would be more available. Alongside the knowledge and advice of them not being the be-all and end-all, and other options; but they’d be offered. It’s still pain! (There’s still the ‘it’s not real it can’t be that bad’ notion underlying this. I can’t find a cut so you don’t get a plaster-attitude. That because of that the alternative route’s the only one. That because you have fnd you obviously can’t be trusted with pain killers. You’re sure to be an addict in the making.)I am halfway through one of the pain-info links you posted Mic67 - very interesting so far.

I’m currently investigating the cbd route at the moment, just ordered some stronger vape oil which I hope will be good!

Sorry. I don’t have time to write a longer reply but I just wanted to let you know that after a quick shoddy diagnosis of FND, I have had to climb mountains to get anyone to listen to me that something was seriously wrong. I eventually got diagnosed with a very rare disease. Things to look out for, exercise intolerance, temperature extremes exacerbating symptoms, food making things worse all point to an organic disease. Think about it. How can a supposed psychological illness be triggered by heat or eating gluten!!!. FND is a copout for lazy or un informed doctors. Honestly, I imagine the death rate is FND is just as high as many other neuro diseases due to suicide or finding out the disease after the person has had respiratory failure or something. All I can say, is never give up. Find a doctor who listens. And hang in there. I am sorry to hear of your pain and suffering.

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