1 year post
Вставка
- Опубліковано 4 тра 2024
- So, one year on from my diagnosis I give my review of the first tough year with debilitating symptoms, lots of rehab and I give some advice for those who are newly doagnosed.
Thank you to all of you who have subscribed.
Let me know what you think and of you have any similar stories.
#diagnosis #fndawareness ##rehab#hospitaladmission #benefits #pip #cane #advice #awareness #migraines #collapses
I’ve had ME/CFS for 45 years. It’s now got so bad that I’ve been diagnosed with FND. This came on worse after major trauma - someone close to me on holiday in New York and shot in a drive by shooting. I’m working with a psychotherapist - at my own expense. I’ve taken myself off all meds including Co-codamol and I am improving.
Thank you
Thank you for taking time to create videos. I know it must be exhausting. I was recently diagnosed by a neurologist, after over 35 years of searching for answers. Thankfully, no seizures but I get chronic fatigue, constant prickling and throbbing feeling all over, migraines, tinnitus, brain fog, imbalance, pain everywhere, dizziness, shortness of breath, anxiety, swelling at times, organ malfunctions, slurred speech at times, tremors at times. Every day is different. I react to the barometric pressure, medications, and certain scents. Some foods cause reactions, as well. So, treatment is taking propranolol for migraines and anxiety and cognitive behavioral therapy, physical therapy, and psychotherapy. I had to go part-time at work and semi-retire. I believe I’ve had this since I was a teen.
Good luck with the new physiotherapy. I was diagnosed in June 2020 - good days/bad days, but more good than bad for sure (I'm 62 and had to retire b/c of FND). I can do many of the things I've always done (I'm a very active person) but on a more limited basis. The hardest part is accepting your limitations. I got emotional hearing your story because you express it all so well. I'm glad to have found your channel. Thank you!
I don’t have much of any support. Hanging on by a thread. Thanks for sharing
Hi, so sorry to hear that you think you have little support. Do you have any family? Any professionals who can help?.
@@ChrisCFNDjourney yes a son but he’s out of state. I do get Botox. And have a neurologist at Cleveland clinic I live 2 hours south. Thanking you so much for your support your video gives me hope. I have a speech therapist at Cleveland who is encouraging the ultrasound it’s just hard because I depend on “caseworkers” through local mental health to arrange my rides but I’m not giving up again thank you so much
Yes barometer affects me terribly
Definitely have noticed this. This triggered my migraines mainly.
I feel for you man.
Am on Aimovig now, second day.
Migraines are debilitating. Thank you for sharing.
People don't understand when I just can't function or even have visitors.
Tough isn't it?! Seriously, I just wish people understood it a bit more. Because there's this persona based around FND from the past due to medical professionals saying that "it's all in your head" or "stop pretending"..... but I really think it's becoming more medically understood now and will be in the future.
I hope you're coping well at the moment??
Thank you so much for sharing your journey so far Chris. I'm 62 years of age and my FND journey is just beginning. So much to take in.
You got this!
Yes fnd is a challenge everyday im also my own advocate. I wish you well thanks for your videos keep on going
Thanks for your comment. I hope you're well. It's so important to keep on top of much as you can. No one else will lol
Keep going mate great vid! I notice stress has a massive impact too so the key here is do things that make you calm relaxed let go of negative thoughts the mind is such a powerfull tool ❤
Thx Chris -sorry your FND journey has been so debilitating and discouraging-I too have very similar issues that are flaring up for me too -they want to try Prozac to help calm the brain between comorbidities im hesitant cause it seems like the side effects will kinda make my symptoms worse not better anyways I appreciate you sharing your experience with us cause it is helpful to know there are others going through similar challenges and it’s nice to know what helped and what didn’t
Thx -hang in there -we’re routing for you to keep up the awareness as it is very real what you’re explaining and so many opposing opinions out there -positive thoughts are always welcome
Hey, thanks for your great comment. I appreciate that we're all different and each diagnosis is different for everyone. Everyone will have different symptoms and degrees of disability. But it's all coming to light now how common FND is becoming. It's such a shame. I hope you are well amd coping well? Chris
Thank you for sharing 🥰🥰
You are so welcome, thanks for following my journey
Im strugging with the same issue its been about 4 years now I was able to go from paralysis and dystonia to walking in my home now. I still get flare ups and dont drive or walk outdoors much but every day is a new day. Stay strong
Thank you so much for sharing your Video of 1 yr in with us Chris💕What a terrible time you've had😢 I'm so happy for you that you have a good Support System and amazing Family 💞 💕from 🇨🇦
Thanks for your supportive comment and for following my journey. Hope you're well
Relate to everything you have shared Chris, it affects every area of our lives. You are doing such a brave thing in making these videos. Loneliness is abig thing in this condition.
Isolation and loneliness really is tough to accept after being very sociable years ago. However, you know who are your closest friends during times like these.
All the very best and make sure to reach up
❤
Hi Chris my diagnosis is almost a year too. Got some neuro things to go to and have been given a date for some FND physio which will be interesting… if you want any info let me know and I’ll share the things they do with me :) thanks for posting again.
No neuro psych apt as yet. 2 years wait in Sheffield and I’ve done around a year wait so far…
Thanks for your comment Sarah. I really hope that the physio works well for you. Keep us posted and reach out
Chris
Was your pain/is your pain anywhere .other than the migraines and chest) with your FND and if so, what helped you? Oh wow... the vision thing, the breathing thing, the trigeminal neuralgia, the muscle spasms, the chest squeezing thing,.. I have that on my entire rib cage and it is horrendous... it IS scary and I have had that too. It IS super scary. I was told I had vasovagal syncope or POTs but having read other folks stories I wonder if it is simply an FND thing... it is so hard to know. Amitryptiline caused me to have sinus tachycardia and when I changed that to a new med, it stopped, so if you are on that, perhaps mention that to your neuro. I really appreciate this channel. Thank you for making it. I am so sorry you have to experience this. I have FND too. And you're right.... there is literally no follow up and there should be - at least you have a neuro who is somewhat following up with you, that's a positive thing. I was simply left to my own devices and had to pay for a consult with a private neuro and this is quite common. As far as England goes, Brain and Mind, run privately by Mark Edwards who I have only heard good things about is meant to be excellent although as far as I am aware (from the reddit subforum fnd which is super helpful and supportive if you haven't been there) it isn't cheap, but someone on subreddit saved up for it and found it helpful. Also, what I have found helpful is Howard Schubiner's work. It's a website named Unlearn Your pain, but it covers multiple things, not just pain. He is also super nice and will respond to emails if you have questions and he has a free course, a book and a pay for course too... hopefully this may help you too, it has been very helpful to me although initially I was very sceptical! I hear you re the meds as well as how things get lumped under the FND umbrella - which can be quite problematic as it seems when you go to the emergency dept with a new symptom whatever it is they put it down to FND... I really feel for you, but be encouraged - people have gotten better from this, even though thus far mine has also progressed. I am hoping you and I fall into the category of ultimate recovery. Also, giving up work - I hear that.... I am so sorry you had to go through that. And yes, I was like you.... super fit, living a very positive and healthy life. I know you feel like a 70 year old.... so do I, but don't give up. You are not alone and I am so glad you have family support.
Thanks for your comment and support.
Yeah I definitely get pains and lots of numbness. I forgot to say that I use a cane now my gait is awful. I get wobbly days and my feet feel like they're burning.
The pains also shoot down my legs as well as cramps And dystonia.
I hope you're coping well and getting support as well.
Do you have hypomobility is your pain fybromyalgia fnd seams all same condition
I've only just been diagnosed. At the moment i have fatigue, dizzy, and body jerks. After a week in hospital i got 5 to 7 mins with the neuro. She seemed solid it was FND and all i got was a website... i am in the dark on what to do. Can anyone tell me how often symptoms change, get worse etc? Should i go back to my job of coding job. I find it stressful at times due to the brain fog i guess? Is it a good idea to go back will it make it worse?
I was diagnosed with FND due to a semi paralysed leg which began a few weeks after my 1st jibby jabby for covid. Could the jabs be causing this condition in some people.
I believe it could certainly have triggered FND for a lot of people as the spike protein gets into the nervous system and affects people differently.
Is there a link to the face book group please? Thank you
facebook.com/share/mwT5nBTycSqmS1qF/
Hope to see you in the group
Have you seen the psychologist?
Yes I have and am having another 12 weeks . Neuro is still testing for other conditions
@@ChrisCFNDjourneyarnt all your tests clear?
Do you think fnd is related to ither illness ms Parkinson's.or mimicking it symptoms do you mean
FND definitely mimics other neurological illnesses which is scary. The number of times I thought to myself that I had ms or parkinsons
@@ChrisCFNDjourneyyes scary pain upper body my worst symptom daily do you get much of this and do you have hypomobility it's highly linked to fnd
What meds did they give you for FND?
Sertraline (low dose), pregabalin low dose, nortryptyline
I take tramadol, amitriptaline excuse spelling 😂 diazepam when really bad ive found it is a superdrug for leg pain even the day after my legs are like new again! unfortunately its not a long term drug because of addictive nature but arnt all drugs addictive if they work 😊 the amitriptaline seems to work with the insomnia! Im hoping i can cut out the tramadol soon slowly slowly ive found one of the best treatments is massage works wonders also i see a chiroprator thats also really good ❤
@@ChrisCFNDjourneyhi mate i tried gabbapentin tbh it made me worse swelling in legs mad fatigue i was like a zombie 😂
@@alexbrookes5355 yeah? I have weaned down to 75mg a day. Now just been prescribed baclofen for muscle spasms
@@ChrisCFNDjourney what tests you had chriss? Im waiting on a another brain mri had one 2 year ago nothing seen but neuro recently found issues with pupil and dialation light test? So booked in again.. Im also having a emg and nerve conduction study for the twiching drives me nuts!!! is it the same road you have gone regards tests?
Thats pots
I think I may have lots on top of FND. The Neuro is on top of it all and having more tests. Thanks for your comment
@@ChrisCFNDjourney yes I have fybromyalgia CFS part of it to but underlying thing what causes it is autism ADHD which just diagnosed after 27 years CFS fnd fybromyalgia.the link are you hypermobile?