Losing hope

[Keeponfighting]

Has anyone got heald from FND or know someone who has?

[CDOX]

Hi. Please don’t lose hope! I know it can be really tough and there will be days you feel you can’t go on. But, there are stories on this forum of people getting healed. I posted my own story a few months ago: healthunlocked.com/fndhope/.... This describes how cranial osteopathy has enabled me to go for months at a time of feeling completely well and symptom free.

Of course, this was specific to my condition and there will be a range of different treatments for different people.

However, one thing that I think is available to all is this promise from the Bible: “but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”

‭‭Isaiah‬ ‭40:31‬. That is my prayer for you today.

[Keeponfighting in reply to CDOX]

Many thanks for encouraging me. Ir is just sooo frustrating when you are supposed to have done everything the practitioners recommended and nothing works. You try this and that nothing works. And yes you are right only the Lord can help me and so God’s timing is the best, is just sometimes it can feel a long time especially when you are in pain.

Take care and God bless you

[Justdrea81]

I am not healed, but I am significantly better and functioning fairly well, considering. My symptoms started in May and I am back to working full time from home. PT and OT helped a lot. I also started thinking of my brain as a PC that hasn't had a software updated (I work in IT). And also for me, while I am also a Christian, I started looking into Secular Buddhism. Secular Buddhism is similar to Buddhism in the sense that it applies similar principles without a religious aspect. There is no praying or alter. But there is mindful meditation and a lot of re-framing. The biggest thing I learned from Secular Buddhism is that pain and suffering aren't the same: pain is what the world does to you, suffering is what you do to yourself. I may be in pain a lot, but I don't feel as though I'm suffering anymore. And that was really powerful for me. This is the podcast that I enjoy. Maybe Christianity and Secular Buddhism will be helpful for you as well soundcloud.com/secularbuddhism

[Keeponfighting in reply to Justdrea81]

Thank you and happy to know that you are feeling better and working full time.

[Keeponfighting]

Thank you my friend

God bless you

[bobbybobb]

I keep hoping there's a Einstein out there that will come up with some answers. It truly is a miserable disorder.

[Keeponfighting in reply to bobbybobb]

Hi Bobby

Thank you for your reply

The sad thing, is when I get realy bad in whatever pain I cannot explain and when my body gets powerless and weak due to lack of energy , I don’t know who to call for help. If You call ambulance they take you to the hospital for two days then refer you to the same neurologist who has just discharged you because he thought there is nothing he can about your condition. So you are left to suffer without any support or you are referred to mental health as if you have mental illness . Thanks so much for your reply. God bless you.

[bap379]

I have included two website links that might be able to help you. I also suffer from FND and it can be frightening.

neurosymptoms.org/

fndhope.org/registry/

Good luck xx

[Keeponfighting in reply to bap379]

Thank you for your reply

I do use these websites time to time, I read other people’s own experiences and I used some of their recommendations like the form of treatment they have used and nothing seems to work. I think people’s replies to my post have been more encouraging than anything else.

Thanks for trying to help.

God bless you

[cgarff]

Hello keep on fighting.. Do exactly as you say, keep on fighting, I have been dealing with FND for almost 9 years this Dec. I wish I could say it is a quick and easy fix, however. I hear that the faster you catch and start trying to treat it with therapies and neurology, the better it is for you. I wasn't diagnosed. With it for several years, and have been bounced from one doc go another because there isnt treatment. Here in my staté! I would have to travel from Utah to Kentucky to obtain the right treatment. Yet I still keep fighting. I have been through many different kinds of ups and downs and had to push docs to think out of the box at times. BUT.. Lately I have seen more good ups than downs, and am finding the right meds combination has helped, as well as A great therapist.

I wish you the best of luck, and hopefully a quick recovery.

Cheryl

[Keeponfighting in reply to cgarff]

Thank you so much cheryl

I too have been with this condition for 8 years

I am just fedup at the moment but all the replies to my post seems to have helped a bit

I hope you too get better

All the best and yes keep on fighting