Friend with FND. Lost hope in life

[Trix618]

Hello everyone! I have a friend that suffers from Functional Neurological Disorder and is just so frustrated with finding the right treatment. He is constantly in and out of hospitals due to his muscles tensing up. Unfortunately, they just send him up to the psych ward every time. He has given up mentally and all he would like is to find the right treatment so he can be happy. He is unable to walk because his legs give out at certain times and this embarrasses him. Is there anything that worked for anyone that deals with?

[tabey]

Dear Trix618

I'm so sorry to hear about the terrible issues your friend is facing. All i can say is no matter how hard and dark the times get, just try and stay as positive as you can.

I was very much like your friend, until i broke and took advice from the lovely people on here.

As strange as this sounds, try not to be what you use to be before 'FND' hits.

As this just puts extra pressure on yourself which is going to make you worse.

Try to break things down into smaller chunks and take things a step at a time.

The medical profession is clearly not ready for FND and this needs to be addressed some how. Things like this annoy and frustrate staff in A&E as they are so focused on solving the issue, they can solve a broken limb they can sort heart attacks but sadly things with the brain, which cause many issues which appear to them normal, send them into a panic

and they're not sure what to do. I'm not saying they don't care, because they do, its just lack of knowledge and training that puts people with FND at a huge disadvantage. Try and get his pain under control. I found a small does of oramorph helps me in the day when the pain and spasms get bad, its seems to really help.

We are all hear for a chat and I hope anything I said above makes sense. I am not a confident person myself but i really do wish your friend all the best and tell him he is not alone.We shall all beat this horrible condition, its just going to take time.

Best wishes

Tabe

[sykgirl in reply to tabey]

I completely agree with Tabe. Living with FND takes great mental resilience, and using strategies that reframed how I see myself and my world, helped me adapt. Concentrating on a smaller world, focussing on what is directly in front of you moment by moment reduces the feelings of helplessness. Control and successes are important, so I found it helpful to let go of bigger unachievable challenges, and focus on the little things. Depending on how bad your friend is, just getting dressed may be an achievement.

I also find meditation and just spending time sat outside doing nothing beneficial.

Sadly, your friend may go through a period of bereavement at the loss of his old life, following the stages of grief you would expect when losing someone close. This is very common. Beware of people getting the chicken and egg confused; FND can cause emotional or mental health issues which medical professionals then try to say were the cause.

Your friend is lucky to have you. There is no magic cure (though who knows what the future will bring), but, especially with good support, it is possible to have FND and a contented life. Not the life you planned on, but a contented one.

Best wishes to you both.

Emm

[princessabi]

It is unfortunate how unable doctors are to help us all. We have been bounced around. And it seems my personal research and at home treatment has been more helpful to my daughter than any dr. The best advice IS to stay strong. Remember things that make you happy, and find new ones that you are able to do. Staying busy, even an at home hobby can keep your mind off things you cannot change. I'm sure it's not the answer you are looking for, but it has helped us get through this on a day by day basis. I wish peace for you, and comfort in knowing you are not alone. Message any time..

[pickleweed]

Recommend the free Woebot app to your friend, which does pleasant cognitive behavioral therapy. Keeping a belief that one is capable of recovering from FND helps with recovery. In which part of the world does your friend live?

[CMHoch2002 in reply to pickleweed]

I am the person she is referring to and it is very, very difficult. My body simply will not relax, and if I can't get it to soon, I might get desperate. Going to the hospital accomplishes nothing but nor does staying home. The pain is absurd. I will try the morphine from making a little poppy seed tea since I am sure doctors won't help me. Ironically that was part of my suicide plan, that and benzos but maybe small amounts would help. I am from Bloomfield ,NJ.

[pickleweed in reply to CMHoch2002]

Try to see the neurologist Dr. Schneider, in New Brunswick, NJ: health.usnews.com/doctors/d...

Dr. Schneider was noted to be familiar with FND in the Facebook group called "FND Hope US/Canada". You may want to try kratom tea. I have been reading about FND for over two years, and it is a weird condition, but it is potentially curable. The signals (like the bad pain) going to your consciousness are erroneous, and your consciousness is unable to communicate with your subconsciousness to fix the problem. Your health insurance company may have a list of people who do hypnotherapy who might be able to reduce the pain. You can also try meditation to deal with the pain. I have found that electrically shocking my legs with TENS units helps ease the pain. When I feel suicidal, going to sleep has stopped that feeling, and Benadryl/diphenhydramine helps put me to sleep.

[CMHoch2002 in reply to pickleweed]

Thank you. I found this very helpful. I am going to call a hypnotherapist on Monday and will call the doctors you mentioned.

[pickleweed in reply to CMHoch2002]

I found another recommendation for NJ: Dr. Tyran G. Mincey (Holistic Chiropractor) Montclair, NJ. integratedhealthcare.us/

[CMHoch2002 in reply to pickleweed]

Thank you!

[RobertWT in reply to CMHoch2002]

Hi CM, if I may be so bold.

Several replies have already said much of the wisdom that you must find within you. I particularly like:

Take small steps and see your successes, rather than your "failures";

Cherish good days. Add bad days to your diary (and leave them there, where they belong!);

FND is widely but not universely misunderstood. Practice your explanation for the greater education of friends, family, most of all doctors/nurses;

Disabuse yourself of the notion that FND is a psychiatric condition. It is not. It has a mental element because of the disconnect between the amygdella (in the hypocampus at the base of the skull) and the CNS. It is NOT an invitation to the funny farm. I have bipolar disorder and despite the FND my moods are and continue to be stable. Probably even more so since the traumatic and sudden onset of FND. My psych team agrees with this. Unfortunately, usually in triage, as soon as bipolar gets mentioned, I am pidgeon-holed into the psych box. Pah!:

Keep positive. I fall frequently. After the first 100 or so times I stopped counting;

The uncertainty is a real bugger. Not knowing if the 'walk' to the kitchen will result in a mug of coffee or a visit to A&E (ER) is a little daunting;

Advice:

Look after your anxiety. I have been told that FND can keep you at the very top of your stress volcano, ready to erupt at the slightest trigger. Many of us can trace the source of our FND to a trauma (physical, emotional or psychological). In my case it was a medical blunder (clash of meds followed by two cardiac arrests and a month of treatment based on a wholly incorrect/snap judgement/diagnosis. It took a change of neurologist and eight months to get a correct diagnosis. In FND we (our bodies/minds) have been tricked into believing that we are in a constant state of readiness - fight or flight - rather than a 'normal' state of rest and digest. Any event, even minor ones, can trigger this f or f reaction. We all know only too well the effects of this. I call it neuro-melt for want of a better word. I become jellyfish man and panic and am fearful.

Have you gone through the two stages of 'can it kill me' and 'please can it kill me'? Yes me too. I have enough insulin to make my passing relatively painless. But it is not the answer. Definitely not. Do not go down that route. You have so much more to enjoy. Yes I did say ENJOY. F**k it man, work on your novel, research FND and write about it. Your experience may provide someone somewhere with the lightbulb moment that leads to a breakthrough. You have a gift that NO doctor has. A first hand knowledge of what it FEELS LIKE to suffer from and live with FND.

OK rant over. Back to Buddhist chanting (my personal salvation and staff on this bumpy road.) P.M. me on fb (robertwt in Dublin, works at kosen rufu) if you would like a direct dialogue on this or any other issue.

Keep going. Be strong but be flexible.

I have decided to get better and I will. I want to hear your success story. Even a good day is, well, a good day. So live free. Go for it. Whatever slogan takes your fancy.

Just keep faith that you can and will get better.

Best regards

Robert WT

[CMHoch2002 in reply to RobertWT]

Thank you. I found that helpful.

[Bumble3 in reply to RobertWT]

I have just read your reply to CMHoch2002, your brilliant thank you it really helped me to!

[RobertWT in reply to Bumble3]

Thanks Bumble!

If I can help, well, you know where I am!

Robert

[salfnd]

Hi Have you tried to see where the good Neurologists are around the country and see if your friends Gp would refer him? Its worth a shot, Being where he is will not be helping him mentally or physically . Has his family tried to help with getting better help for him? Physio can help as well, has anyone suggested that to him.. xx

[RobertWT in reply to salfnd]

Hi

There is physio and neuro-physio. A talented neuro-physio can start the process of unlearning the induced habits and start the reconnection or redirection of the thought link between mind (amygdella/hypocampus) and the CNS.

My mind says walk. The signal gets jumbled and my legs say I'm doing my own thing. (Very simplified example).

Re-routing away from terror/panic/fear and so on is an essential part of the process. My anxiety is a constant companion (like Winston Churchill's 'black dog' as he described his depression). Mindfulness, Buddhist chanting, affirmations, counselling, even CBD oil, damn it, if it gets me down the stress volcano is a positive step forward.

Just keep on. Keep on. Keep on.

Robert WT