Haven't posted in a while, as I've been trying to get my head around a new 'diagnosis'.
Well, it isn't really a diagnosis, as I paid a lot of money to see a neurologist at Spire recently and after a 30 minute examination and a good read through all of my notes he told me that I have 'un-explainable symptoms'. That giving me a name wouldn't help me, or be fair to me, as it would be a lie.
So that's where I am now. He's suggested seeing a psychologist, working out a graded exercise routine to increase me stamina and referred me to my GP for referrals.
I've had a 7-day heart monitor off today, gave that back this morning, just to rule out any heart problems. I should be referred to chronic fatigue soon, and have a rheumatology appointment next month.
So, yeah.. my question: has anybody tried hypnotherapy for coping with their worst symptoms? I have many, with breathlessness, dizziness, general limb weakness and overall exhaustion probably being the most crippling. My wife and I discussed it as a last resort/alternative therapy to try, along with things like reiki, etc. Any thoughts?
Thanks all,
Dave
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DaveT81
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Hi Dave, my stroke consultant has referred me to stoke for hypnotherapy but haven't had it yet as the waiting list is huge. Has anyone had it and it works?
Hello Dave! I haven’t (yet). Took me 6 months to accept the diagnosis after an entire year where i was told it was just anxiety ( by 2 doctors @ Spire). I have tried Reiki, acupuncture and CBT therapy, but nothing helped to make my symptoms go away. I am now about to star a type of counselling called ACT and if this doesn’t work either i will eventually turn to hypnotherapy. Pls keep us posted if it hypnotherapy worked for you. You can also try this book in the meantime -> Hope and help for your nerves ( Dr. Claire Weekes) it’s primarily for anxiety, but there are a few pages there that cover FND too, hope you will find it useful.
I'm keen to give reiki a try myself and a neurologist I saw at Spire has said my GP has to refer me to see a psychologist to learn to cope with my symptoms.
What is ACT? Not familiar with that!
Not at all thinking a hypnotherapist can just 'poof' all of my symptoms away but I'm looking at reviews and people seek to think its beneficial at least.
I'm open to the idea its simply mind over matter or even some sort of placebo for the mind, but I'll take whatever it is, as long as it works and I can start to feel relatively normal again.
Hi Dave , my daughter has FND for a year now with some good days but still crap days when she can’t get out of bed what I would like to know has any body ever been told FND is a pre existing condition thanks
Not sure if you are aware of the website FNDHOPE.ORG ???If you go there it has alot of material on there will help answer some of your questions too.
Preexisting condition??? Can you explain what you mean by the term preexisting??? So that I'm sure to answer correctly.
What I can say from day to day I am unsure what its gonna be like for my brain & body. One min I seem normal the next min I look disabled. The symptoms come and go for me also. The more I mediate 🧘♀️, listen to music, stretch, work with my dogs even if I should probably be laying down, watch cartoons, do art in paint form and regular coloring book also help me cope daily and talking to my fellow FNDers when I am weak , I vent here, to God, and someone who is understanding to my diagnosis. Having mutual respect is extremely important for us as it is for others but ours different level of respect. The more stress I get, the lack of sleep, and other things make symptoms worse.
I have been going thru my stages of grief with this diagnosis. I am currently at the point of saying if you have a problem being around me due to my symptoms than it is obvious you dont need to be around me and that is including family. I try to find things that uplift me while I go thru my pain. Laughter is another good medicine.
I send comfort,peace, understanding of good health professionals and someone around you (caregivers go thru alot too with FND patients), help both of you guys way. 🙏
Hi Dave, will watch this space as I to am thinking about this as a last resort.I have my fmd under control after weeks physio with Prof. mark edwards team in London, but now have developed severe stomach pain which has been branded functional too! In my search so far it appears to be a special type of hypnotherapy needed for fnd and so far not found anyone doing on nhs. Searching for private one locally now. Wish you well.
Oh how I miss my BFF in London and would LOVE to see your Physio and team and meet you if I ever get to fly across the POND again! I pray my brain stabilizes enough after surgery to be able to handle cabin pressure
Look up this guy and chat with him about Hypnotherapy!
He is actually a friend. Tell him Julie in Pittsburgh recommended you reach out to him. And PLEASE let me know if it works out! As then i might breakdown and cross the barrier of FRIEND vs HEALER space between us! He has offered to try to help me!
First off I want to say how you are feeling about your diagnosis in the moment is normal.
But the doctor's comment I totally dislike. Just because he cant explain what is going on with you doesn't mean he need to make such careless statement just say I dont know is good enough. These type of doctors is why I always get all of my medical stuff and go over it myself when I can. The fact that they claim they dont find nothing has been wrong many times in my case, so advocating for yourself and keeping up with your results is vital.
The fact that this so real it make his comment to me an insult. I work daily to retrain my brain and body the best I can. Sometimes no matter what you do your body gonna do it. I have found things that does help me though while I been going thru this journey. The goal is finding out what works for you and try to do it as often you can.
Therapy is okay to do but in my opinion the best therapy I have had is being on here talking to other fellow FNDers who get what we go thru entirely. Attending therapy sessions with a person who doesn't get it and if its obvious they arent trying to understand what you going thru time to fire and rehire. Therapy can help in a sense but depending on therapist demeanor and such.
I send comfort, someone with understanding your way, and peace thru your journey. 🙏
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