I am Johanna. Recently, last week January 14th, diagnosed after a long, difficult and very painful search for a diagnosis since November of 2009. I have posted my story tonight in response to another post and for now, cannot repeat due to fatigue.
I am an artist, writer and a holistic healer. I presently live in Virginia, in the Blue Ridge Mountains, after returning from Montana last year. I am in need of connection and support. I am also seeking a support group near Luray, Virginia, where I live.
Reading the posts and hearing how other s have fared in there experiences in seeking help, has already been helpful to me. So, I thank you all. I don't feel so alone now with this. Would welcome responses from others with suggestions for therapies/techniques that help for improvements.
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Tewa
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I would suggest joining our main Facebook group via the home page of website FNDHope.org and then the associated "Mind, Body, Soul" group where members support each other through positive ideas and suggestions. There is a large US contingent (again with their own associated group for more local support) and you'll find plenty of information and support for nearly 3000 FNDers in the group.
Nice to meet you. I agree with other post about Facebook group but wanted to say hi ! (:
I got ill Feb 2011 only recently came to know and accept FND diagnosis. Things that have helped me are, after lots of prayer and researching, certain vitamin supplements like D3 and B complex, omega 3 and vitamin C. I also use a nautral progesterone cream (Menogest) which can help brain recovery (again from research). I think it all brought on early menopause as well.
I should say as well that whilst I do have nerve pain in my legs, tingling in my extremities, balance issues, bowel problems and painful periods still the worst thing is been "total Insomnia" for me and the only thing that has helped it after prayer has been the above. I've also tried CBT, hypnosis, natural and alternative remedies. You name it I've practically tried it but these are what has helped me. I also tried hyperbaric oxygen therapy which helped with the majority of my symptoms but made my Insomnia worse. I'm currently trialling Mindroid which is an app that plays restorative brainwaves audibly to try and settle my brain down. I've been really well lately despite a couple of bad relapses and a very bad Christmas and New Year. Hope helps someone anyway....
One day at a time with this one as it can wax and wane and Morph new symptoms but you are never alone x
Thank you. Good to meet you. I will try the brain app and the supplements. Was in treatment with a chiropractic neurologist who gave me the hyperbaric oxygen therapy in the past. It did help somewhat. Also tried pain management therapy and neuro-vascular therapy while I lived in Montana. Haven't found a Neuro-vascular therapist here in Virginia.
Prayer, meditation, acupressure , relaxation tapes, and yoga breathing are my daily tools for coping. My sleep is disturbed due to the painful muscle and bladder spasms. I am up 3-4 times each night. Also sleep disturbed with waking up choking/swallowing problems.
I so easily 'crash" when overstimulted by noise, lights, too much activity going on around me. Have had to limit outside of my home activities. Also any dental procedure or tests; colonoscopy, MRI, CT scans fry my circuits.
Hard for others to comprehend the various symptoms and the waxing and waning.
Have a background in Human Services and as a holistic health practitioner. Those experiences have helped me to do my best to continue to seek answers and walk thru this.
Thank you for your response. I will go to FNDHope.org as per your suggestion. This site (HealthUnlocked) has been helpful to me to read the experiences of others and to get and give support.
Can anyone out there still drive a car? I use a motorized power chair and even the effort required to push the lever to keep it going caused shortness of breath and increased weakness/fatigue. swallowing problems. I have to limit or eliminate my use of the chair depending upon how I am each day. I do hope to improve so that I can drive again. Sure do miss my road trips.
Is there anyone out there who lives anywhere near Luray, VA?
This can be due, not to the physical effort involved, but the mental concentration of fine motor control. Similarly, writing can cause issues. It seems to be due to use of the "conscious" part of our brain instead of the "sub conscious" and overload occurring. I had a similar experience at the start of mine, but fortunately this has now resolved.
I'm still unsure if I have FND as not completely sold on the diagnosis as seems a cop out when they cnt pin point things
My issues with balance and chronic pain and walking needing two sticks came about from a car crash. I have 2 slipped discs pressing on spinal cord and loss of sensation waist down. Along with tests they proved this.
So I do drive but it took a year to be without any issues with brain or memory issues etc like some folks experienced.
I've not been as bad as some people have been but I also know it's not about top trumps of who is worse!
I go swimming 3times a week and do 10 lengths each time but left wrecked after and glad I have my chair there.
My faith in Christ has been such a blessing and got me through dark times and I've seen slow progress and I believe this is from God giving me the peace of mind that he is working all things together for me.
I have 2 jobs when I feel fit to go too..
I'm 28 and determined to beat this and to eventually have a family. But all when it is right
Thanks for your response. Good to hear that you are able t drive. And to be active..do understand how after activity you are wrecked. I know about that too. Do you use a power chair? I have one and before I got it, I was basically home bound for 10 months.
It gives me more independence, mobility around town. Right now, I am snowed in, as Virginia got quite a bit of snow. I miss driving and going on my 'road trips. " In the past I drove myself across back and forth across country to Montana. I have lived there and in Virginia.
My faith has sustained me too though this long and difficult journey. There were times when I thought I had been abandoned by God, then something positive would happen, a doc who was supportive and affirming, to uplift me again.
I don't fully accept this "umbrella diagnosis" either. Since my neurologist is not dismissing me and acknowledging that there needs to be more research, and the docs need to be aware of the reality and distress of these symptoms, I now have some hope. Before I was caught up in the "medical conundrum" of seeking help and getting diagnoses, first MS, then not, then Myasthenia Gravis, then not. I too, have had abnormal test results. Then, still it must all be in your head. Going to mental health to be evaluated and all of them not finding a psychological causation for my symptoms.
The research I have already done, and being able to come to this site, has helped me. I am going to try some type of neural brain re-patterning.
Keep the faith, persevere. Ask God to provide direction, answers and lead you to those who can help you. Keep active as you are doing. And.....thank you for taking the time to reply to me.
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