I have been following forums for quite awhile. Everybody seems on here to be having the same issues and problems and everybody seems to have a different answer. We all seem to have something in common and the same symptoms and the doctors are just telling us different answers or possibilities. my symptoms are getting worse and I’ve got twitching of the muscles now and got it in my legs. I have a video but I cannot upload it. I can only upload photographs but my legs kind of feel like they’re plugged into a plug socket. They are buzzing. Then the skin feels like it’s tightening . I look down and I have very prominent patches of goosebumps like everybody else on here. I’ve been to the doctor a few times about it and I’ve never heard of it or never seen it and look at me like a mad or a hypochondriac. One doctor told me it looks like I’m going to fight or Flight mode. to be honest it does seem to happen mainly when I’m stressed, upset, anxious, malnourished or haven’t slept much .
This still does not answer my question?
What is it?
Why is it happening?
How do I treat it ?
is it dangerous?
I see posts on here the recent I’m very very old and they’re still doesn’t seem to be anybody with a very clear answer. I have spent the last few days convincing myself that something terrible is happening to me or I have a brain tumour I have epilepsy coming. I am a single man. I live in the middle of nowhere with a four-year-old with additional needs a new neighbours and I’m terrified something terrible gonna happen
someone please help me
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Jenradmo
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I am so sorry your going through all this it can be so scary but if you have been diagnosed with FND than starting therapy as soon as possible will help you on your road to recovery. What you described about your fears of having a terminal illness or developing a tumor is a common reaction to this terribly disabling illness but it is not life threatening.
I would start by making sure you have a diagnosis a neurologist or neuropsychiatrist will be able to help.
The leg symptoms you described are common and I also have them the best practices for me is to try my best to just recognize them remain calm and let them pass distraction also helps.
Sounds very exhausting but that the multiple doctors you have seen so far have not found anything to concerning is a good sign. Why not try to get to a good neurologist,neuromuscular specialist or neuropsychiatrist to help you figure things out more and hopefully get a solid diagnosis. I think until you have some experts weigh in things can be confusing and scary but I would let the professionals do there job and trust in there findings. A few good websites that explain FND that are great.
yeah, that sure sounds like FND. Propranolol can sometimes help with tremors, LDN low dose naltrexone or gabapentin for pain, tizanidine to help relax muscles. I take Protryptaline that helps with pain and anxiety somewhat. Marijuana and CBD can help with pain, anxiety. Although there are no drugs to treat FND, these might help with symptom relief. Distraction helps quite a bit, if you can manage to stay busy mentally and physically (really hard on those bad days) . I’m learning to accept my bad days and make use of my good ones. Be kind to yourself!
Hi, can I asked what country are you based? Maybe someone here lives a in the same state/district and we could recommend a starting point. Its sadly over the head of many GPs. My son was original diagnosed with chronic pain and with that came disassociation. So basically it became too much and the signal transferred to his legs, it wasn't life treatened and he would just rest. Then when he stopped concentrated on his legs and was distracted, he managed to get up and carry on his day but I think many would agree this takes practise and learning to be in tune with your body.
I spent so much wasted time waiting for the professionals and now after a year he will get to have "talking therapy".
It sounds like you have so much to deal with that your body has gone in to fight or flight mode but you can take control back.
As the others say, be kind to yourself, try not to stress, practise meditation (there is lots of resources out there, I posted a stress meditation one here.
Do you have help with your 4 year old? It sounds like you made need a little help there, looking after a youngster can be full on a times.
hi no I don’t really he goes to his dads every other weekend for a night and day but not enough. He goes to school soon so I was hoping to get a little job so I can have some adult time. However someone kindly remind me of the summer holidays and holidays that they break up for.
so I am stuck. I’m going to carry on doing a bit of my mobile hairdressing and hopefully build up a little bit but it might do we good to have some adult time I guess and me time x
Definately, can't his dads parents help out too in the holidays.Maybe keeping a diary may help see what triggers you and then tackle them one by one. Start with the least stressful and get that sorted and then work up to the others. Just an idea.
I guess with talking therapy its a non judgemental space to offload and help one work through everything. So maybe writing it down may help.
I know they say if you can't sleep and things are your mind, write it down and have a notepad and pen by your bedside. I have nights when my brain goes into overload and its not me suffering with FND.
We were offered a couple of physio sessions and that was the first time FND was mentioned to me directly and it was picked up on a copy letter to the GP from paeds appt, something that I never did notice (all a bit of a blur). Our original diagnosis said chronic pain and we were directed to the neurosystems chronic pain section. Then somewhere in the text (the letter to us was about two paras from recollection) functional disorder (not FND) was mentioned.
I requested the neuro appointment when the physio referred to it and I also asked for an neuro physio appointment, she made usual suggestions like "grounding yourself". Ie. Instead of my son lying in bed waiting for the spasms to stop, try and stand every half hour or so (have something to grab hold of too just in case). So try and ignore the spasms etc and feel the ground beneath you. Take control.
unfortunately not. His career and everything about him is more important than anything. He sees his son every other weekend. Basically two nights in two days a month. His mother says that she can’t cope with my son for more than an hour because it makes her tired. It’s ridiculous. Where is my mum who is disabled will have him for a day
But she can only manage one day a week or two2 half days
someone else said about looking into fibromyalgia I do have that. I have now not been taking my mirtazapine for nearly a week and the twitching has calm down.
hopefully it was just a mirtazapine doing it, but I wasn’t on it when it did it years ago when my dad was dying
I’ve responded to prior posts similar to yours but I believe it is pathogenic. It could be fungal or parasitic. I’m going through the same symptoms so I understand your frustrations.
I'd suggest getting thorough labs done befor moving forward with anything major. At best, you could have a vitamin deficiency, which would be easier and cheapwr to take care of.
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