whether it’s the tremors in my neck potentially flaring up or constantly licking my lips it never ends, I am always worried and never truly at peace. It’s like hell on earth.. I’ve tried hypno, medication, Botox, counselling etc. nothing seems to work, I can't see a way out.
always believed it was due to anxiety, however, I have been in some crowded, very anxiety-driven places since my diagnosis and I seem to be able to deal with it (mostly due to alcohol). But when I lay my head down at night it begins and I can’t stop..
anyone able to relate? If so I would really appreciate some suggestions for making life a bit easier!
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LKE9
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I had cramp in my pelvis for four months, slept for an hour here and there during the day or night, my life seemed pointless I was so, so very tired. My GP was supportive, there is no pathway for FND in Wales! With a bit of research and some trial and error we found that Amitriptyline in a low dose (10mg) took the edge off the cramp so I can sleep better now. Jon Stone's site suggested this as a possible option. I still have a lot of sensory symptoms and my life is very restricted, but I can say that Amitriptyline is the first step in my recovery.Like you I've tried a number of things, I'm working hard on breathing and heart coherence at the moment and and also seeing a Psychotherapist for the first time this week.
Anxiety and stress comes in all shapes and sizes and it's possible that my symptoms originated there. A neuro-physiotherapist may be worth a try, I saw one who had lots of things for me to work on.
It's the most frustrating condition, as you know, but you are young, stay as positive as you can and as someone said to me you are your own experiment in finding out what works for you.
Keep going, try different approaches, do what research you can, try and find things that could help you.
If you live in England you probably know that you can pick and choose to be referred by your GP to any of the established centres for FND.
I can absolutely relate to never being at peace. I've found what I believe is the root of my issues (was diagnosed with fnd). The root is instability of vertebrae C1 and C2 for me. It means that the upper cervical spine is misaligned. I feel that the tremors stem from the neck. I've begun treatment with a NUCCA chiropractor and things are slowly unravelling. I'm 4 months in. Just sharing my discovery, I can't profess that it's anyone else's issue, but you're talking about your neck and nearby lips/tongue. NUCCA xrays are much more detailed than Mri's for bones in the neck, despite what many neurologists told me (they were wrong about this). Mri's were unable to capture the significant problems in my upper spine. Search "NUCCA directory" online as well as "upper cervical chiropractor in united kingdom" to see what treatment may be in your area. They are not regular chiros. They have a consultation and take xrays to see if you're a candidate for treatment. My nucca chiro wanted to speak to me on the phone about my issues before I came in, to see if she thought treatment could help me. I think that there are different schools of upper cervical chiropractic treatment. NUCCA is one, Blair may be another- I don't know the difference. NUCCA is the national upper cervical chiropractic association, out of the US. I have tried so many other treatments too. Ask me questions if you like. May God Bless you with complete healing.
This is interesting because my first ever physio was a sports based specialist and following her I had a treatment at a spa day from what was called a holistic therapist and both these people gave me relief from my neck land tremor situation.
Now following the treatment I got from them I tried to use an exercise program to support the treatment and this is the kind of thing that helped. It does not resolve just to be clear but it did give me some relief.
My physio suggested a yoga program that focuses on using the body to stretch out the neck area so that is the stand with legs apart and bend from the waist allowing the weight of the body to stretch the upper spine so don’t be tempted to try and touch your toes because that is not the point of the exercise just gently hang, I found that folding my arms above my head as it hung both comfortable and did add extra pull. Another exercise I do regularly is put the tip of the tongue to the roof of the mouth and apply pressure again gently in a massage style this addresses any tension in the jaw and facial muscles and for me keeps my jaw alignment. And a third exercise is tai chi breathing using the hand only movements for me refocus the mind and keeps a regular pattern of breathing that can be disrupted by pain and stress.
The only other thing is support for the neck and head at all times so a high back chair and in bed at night I use a feather pillow that I can wrap as it were around the neck and shoulders. Good luck I feel your pain and can only say that if you get just one thing that helps it is an achievement to be celebrated.
I have one of those pillows that supports the neck. They come in different sizes and pretty sure its the measurement between the top and bottom of neck, super comfortable with a soft pillow protector.
Think a specific scan may help to diagnose properly as Evie mentioned.
In pilates, the roll down movement, we bend forward very slowly vertebre by vertebre as we exhale (from recollection - been a while) steady and we hang (called hang floppy) and then slowly reverse the action. I use it just to loosen up when back achy from poor posture.
I would try some exercise to get rid of the surplus energy inside you that makes you tremor. Shaking is supposed to be good for you too ..or try TRE..which you can google and try out. There are also some interesting neck exercises on a website called Beyondpain ..with videos on Instagram.
Focussing on useful activities during the day will divert your attention from the FND and maybe reduce your anxiety, which is the fuel we don't want to give the FND, because it feeds on it. Don't give up trying.
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My Aunty/carer has just upset me! 
My symptoms
Want my life back
Life with fnd
