Giving up

[Ronwyn]

Just got home from seeing my GP after waiting for paper work from Neuro to come as it has been 2 weeks since diagnosis to find that the recondition for treatment for my FND is Phsio nothing mentioned about treatment for the pain I'm in , I think Neurologist in Sydney are full of shit give a diagnosis then turn their backs my GP has never heard of FND no one knows how to realy treat it , let me to you I think more than bloody psyio is going to make me feel any better I give up I just give up this is total bullshit and I can't function any more it's killing me why isn't anyone listening

[Angel73star]

I am sorry xx hugs... can you call the nureos office? Maybe get another opinion? Maybe you can show your gp the wedsite so he get familar with FND?

I know how it feels. Stay strong xx

[Ronwyn in reply to Angel73star]

I did today going to see a neuro who specialises in FND and to get a second opinion have to pay 💰 but if I can get help than I'll have to do what ever it takes all I want is to back to my normal self again I'm starting to hate life cause I'm sick and tired constantly for atleast 3-4 months a year hopefully I can now get the help I need instead of being made to feel like I'm crazy 😜 Thanks for the hugs just had a bad moment

[min56]

Hi Robyn sorry to hear about your problems. Understand the frustration!! Don't give up, fight for the second opinion and read up about FND and refer your GP to the website,relatingand relaying your symptoms.Treatment combination of physio(specialist dependant on symptoms), meds and neuroscience input such as cbt etc.

Stay in there and don't expect instant results.

All the best.

[Recovery2017]

Honestly you are not alone. My GP never heard of it and all the GPs in my surgery never heard of it and 'baffled'. Don't give up, I tried physio but it wasn't particularly relevant for my symptoms. Gave CBT a couple of sessions. I believe in time being a healer, good quality sleep and topping up with supplements for nerve health. I'm also not drinking alcohol. Drink plenty of water. My mother through talking to others has come across lots of stories where people have feared the very worst only to recover and some of those cases are neurological and very encouraging. Don't give up, find your inner strength, do research, sleep and look after yourself and have hope and faith. May I ask what your particular symptoms are? All of us have to dig deep. It's very tough I know but look after yourself and look forward.

Olivia

[Ronwyn in reply to Recovery2017]

Hi Olivia

Thank you for your reply , my symptoms started 6-7 years ago started out with fatigue then I lost the streangth in my left arm , first few years then I started getting to much influmation in my arm Whitchurch travelled down my side and causes my heart to go taci cardi , also have trouble with my breathing last year when I had my flare up I got influmation in my spine , other things like sharp pin Prick pains in the tips of my fingers and feet , memory loss , slurd speech , I have a flare up when the weather warms up same time every year no fail fatigue is the worst I can't seem to get enough rest and I tire out in minutes of getting up, cognitive thinking 💭 is also no good .. now ATM I have influmation in my spine Whitch makes me walk funny cause if the pain and I don't mean pain I mean excruciating pain .. if psyio can fix me I'll be all for it but finding it hard to understand when my own bloody doctor doesn't know how to help 😭😭😭

[Recovery2017 in reply to Ronwyn]

Hi Ronwyn, typed out a long reply, wouldn't send and then lost it. Will try later. Chin up for now 😊

[AliRT]

For what it is worth, I have found physio very helpful. I still can't walk for more than a few steps but I have Fewer falls, can transfer much more safely and have gained a lot of confidence. I am fortunate in that my neurologist seems to know much more about the condition (though they still don't know really why it happens) but I have still had to fight very hard for help and continue to do so. I am still waiting for home help having paid for as much as I can afford myself for almost a year now. I lost my job many months ago.I have also completed a CBT course which I found useful as it was not looking at the condition is all in my head as many people think it might be but did help me focus on ways of coping with the way in which I life has changed. Do you have pain clinics over there? I myself do not attend one, I've just tried to self medicate the pain but you could maybe ask to be referred to one.

I hope none of this sounds flippant as I don't mean it to. This is a horrible condition and I have gone from somebody who travels the world on their own to somebody who can't leave the house or Bathe without help. I hate it, but this doesn't stop it being there so I just tried to get on with it. Do consider asking for antidepressants or discussing with your GP how your mood is affected and maybe looking into CBT. I was able to do it over the phone for appointments. I hope you get there X

[Ronwyn in reply to AliRT]

I haven't heard of CBT as I'm only new to the diagnosis not new to the symptoms , I'll be seeing a neuro soon who treats FND so I should get some help soon I'm waiting for rehab to call back so I can get help with walking and to get use in my arm .. Last year I had stomach ulcers and had to be put on really stronge antibiotics and for some reason I only got sick for a few weeks not months so I'm thinking of self medicating myself to in the hope that if I'm right I should get better within a week fingers crossed and I do not advise anyone to do the same seek advice , all I know that last year was the only year in the past 7 that I got better faster.. I had a Tumor in my right are and doctor thinks that this could have been what caused damage but without really knowing I guess I have to try what ever I can to get better .. I'm pretty good most of the time and I try have a positive outlook today just got to me after seeing my GP I was left feeling again pushed into a corner and I'm just tired of having to constantly exsplain myself to another person I'm not the doctor I shouldn't be trying to fix myself I thought that's what doctors study for to help people when they are sick .. FNDers are made to feel like crap when we get told yes everything is real but we can't help you that I so don't understand xoxox

[AliRT in reply to Ronwyn]

By self-medicating adjustment over the counter but each to their own. Not for me to judge. I've had side-effects to any pain relief I've been prescribed and for that matter I have had side-effects to most things I've been prescribed that turned out to be worse than the original problem. I had a tumour too as it happens and my father passed away. Physical and emotional stress it seems Trigger these things but I now try to reserve my energy for what is happening rather than why. I so understand your frustration but I am always sorry to hear that the people struggling. It does sometimes feel like you have to beg plead for the help you need and it can be so demeaning on top of the frustration. Pardon my ignorancefor not explaining about the CBT. It stands for cognitive behavioural therapy and in short, just means addressing the way you look at things and the way you react to them. I think with good reason it has been judged suspiciously as a treatment for functionalneurological disorders as it perhaps suggests that the symptoms are in your head but as I say, this has not been my experience. It is increasingly used for physical disorders too. Physio has been essential for me and sounds like it will be for you to. I think the CBT would be pointless as a standalone treatment but I personally think they can work very well alongside each other. It might be worth asking your neurologist or your GP if there are such services available in your area. As I say, I was able to do telephone appointments which was a godsend. Hope it goes well X

[cgarff]

OH please don't give up, there is nothing worse you can do to yourself is to give up. Keep fighting. This horrible disorder is destroying so many lives throughout the world, and these dang doctors need to get a clue that this is real, it is not all in our heads, and that they need to do the homework as well. I had a doctor that I did a study with at NIH the National Institute of Health in Bethesda Maryland just outside of Washington DC in the US. Dr. Carine Maurer published an article in a Neurology magazine just this last spring indicating that this may not all be in our heads, that they have found a spot on the brain in the temporpariatal Junction (hope I spelled that right) that may be the source of this. Please go to: functionalmovementdisorder.com web site. The page should be blue at the top, Anyways, in the search bar, look up" Maurer" and it will bring you to the link of her paper. Unfortunately the way the link is positioned I can't copy and paste it in here, but you can click on it, and it will take you to the correct place.

There are many things that you can do to try and help, Physical Therapy, Cognitive Behavioral Therapy (talk or psycho therapy),speech therapy (if having problems talking) and you can also turn to alternative methods such as massage therapy, color puncture and so many more that I can't think of what they call them. But there is help out there, you just have to find the right one. Look up the paper that was written by dr. Maurer, and take a copy with you to the Dr's. Get them to become more educated. Really Dr's. are only going off educated guesses, but until they hear about it, they just don't know what to do for you. Try to de-stress your life as much as possible, rest, don't over do it like I seem to keep doing. find things that might help. For me, I have found that drawing and painting and keeping myself busy help to calm symptoms down so much. If you have had any type of trauma in your past the talk therapy might be able to help as I have found in books I have been reading, that any type of even a simple type of trauma from when you were a child could effect your body years later because it makes an imprint on your brain, and if it becomes unresolved then it can start to cause problems. Also try to find a therapist that does EMDR which stands for Eye Movement Desensitization and Reprocessing, it is a treatment that Phychotherapists can do to help look for things in your past that could be triggering these things. These are all things that can be something to look for, not just a GP. Keep up your spirits, keep smiling and fighting, don't let yourself fall into depression because it can happen way to fast, and then you have a whole new set of problems to deal with. We are all here for you, and know to some extent what you are going through. I myself have been dealing with this for almost 8 years now that I know of, and it is horrible to have your life turned upside down. I have been out of work on extended medical leave for over 2 years now, some days are better, some are worse, but again keep trying. Don't take one Doctors answer as this is it, go to Many. Keep looking and hopefully you will find someone that understands. I know there are not many here in the US, especially in my State, but I keep trying, and I know one day I am going to beat this. Best of luck to you. You can do this, don't give up!

Cheryl

[Ronwyn in reply to cgarff]

Hi Cheryl

Thank you for your reply , and I will be looking at that report as I believe there is also something that most doctors are missing , as a beauty therapist myself I know how important massage can be in recovery I also meditate every day , I have a Reki 2 cert and I'm very spiritual so healthy mind body and soul is so important to me as it keeps me grounded I try not to watch the news or anything that makes me feel down as I'm contisous of how emotions effect the body I also studied psychology in youth work plus I read a lot on how the body and brain function .. the only time I seem to get down is once I have a flare up and all my energy , body and mind goes from everything's perfect to a complete stop ✋ .. but I have found a neuro who works with FND so I'm going to see her I'm also booked into Rehab to help with my walking and speech and I'll give other things a try like acupunchure and go see a chiropractor as I have arthritis in my spine and shoulder , today I'm feeling a lot better headwise and feeling determined to just keep pushing as you said somewhere there is an answer .. I hope you are well and wish you many blessings xox

Ronwyn

[Michie74]

I was like that for over two years not knowing what I had I was passed to doctor to doctor and then when I was diagnosed with FND they just seemed to think that's it and you won't bother them but you still have Questions and you still want answers?