45 years old feeling 80 pain and fatigue

[Analogue45]

hi just discovered this site what can I say I started feeling tired at work and followed by fatigue, chronic pain , tremors and mobility going to been able to drag feet around the house I was fit and always active enjoyed working and had a big passion for my garden and loved to paint and draw in my studio , now I can just about write me name , I exist on the floor few pillows and blanket the bed and chairs are far to uncomfortable painful. I don’t have good days just bad and really bad never had a good day , just the same day recycled , just be nice to hear from anyone who has similar situation, I get really angry and peeved when I see loads of YouTube videos when someone with fnd is going camping running or travelling around having adventures , when people say to me don’t give up hope people with fnd are doing this going skiing ect , I get so angry I not give up hope , I just except this is it , I can’t see myself getting better with the pain the fatigue, tremors the confusion, memory loss and little mobility I have ,it’s just so hard and when people say don’t give up hope , I just want to scream it’s just a permanent struggle and no signs of improving diagnosed around 2 years ago

[Westie_1]

Hi Analogue45 firstly may I say welcome to our group although I wish none of us were here but we are. Secondly we all have different variations of FND but quite a few of us have the same symptoms. Everyone is different and some people have good days and others don’t. So please believe me when I say I understand what you are saying about only getting comfort on the floor and not being able to do what you once did. I was diagnosed in 2018 I am still working but it is a constant battle every day. My pain, tremor mobility issues are there every day. But I do have some better days. I listen to meditations binaural beats and try and get in the garden when I can. Please do not beat yourself up over anything. I can honestly say I have not seen them videos. I very rarely go anywhere but I am still fighting to get better. It sometimes takes the right specialist or doctor to listen in the UK plus it also depends on where you are in the UK too. I just want you to know you are not alone. Not everyone understands what we go through and not everyone cares. Especially once FND is logged on your records. To me it’s a cop out as they really don’t know what dx to actually give. Please try your best to look after yourself as best as you can and try and surround your self with supportive family and friends if possible. Try and change your mindset if you can. That’s what I’ve tried to do and start with little things what you want to do and go from there. I wish you the best of luck and please don’t give up X

[Analogue45 in reply to Westie_1]

Thanks for your reply

[kev60]

Hi and welcome, I totally understand what you’re saying. I used to love my job and would work 7 days a week also enjoyed walking around for leisure now my wife(carer) has to accompany me if I need to go out and the most I can do now is to pop to the shops. I stopped working as it was deemed dangerous for me to continue (glass trade) and also forgot where I worked had to look it up. My FND affected my walking, talking and thinking, had to learn to walk again now 70% of normal still keep walking into walls or falling through open doors but I have learnt to live with it. Neurology discharged me after giving me the diagnosis which took 19 months. So now I have to get information and ideas from sites like this and my gp tries to help. We went to an FND information day held a Kings in London and got to see the difference between people, one was in a wheelchair but otherwise ok another could not use their hands and someone had to help with the paperwork and then there was me , I thought I was not to bad until I missed the open door and walked straight into the wall. I had CBT through PPS (persistent physical symptoms) services at the maudsley although it was done on the phone and as part of the therapy I got interested in “ Warhammer magazine) and started reading books and ebooks ( never read before) , the last year read 23 ebooks. Hope you get the help and information you need . Kevin

[Analogue45 in reply to kev60]

Thanks Kevin it takes to long to diagnose mine was similar to yours, it’s a case of have you got any questions every one he couldn’t answer and gave me a website for information, I was hoping it was something even Parkinson’s were I could at least get some medication to treat it I’m on the waiting list to the pps I have to laugh I’m on the waiting list to be put on the list for for appointment I wonder after two years they say I’m on the list for an appointment now , i used to read a bit but struggle now I read words and a page and just can’t build the plot in my mind , are they actually story’s to warhammer I just thought it was a game I always liked the figures people painted

[Cornelia35]

i have the same symptoms.. its the vaccines that caused my fnd unfortunately there isn’t any treatment.. i cannot even put in words how difficult is my life.. everyday..

I don’t see a light in the tunnel because there isn’t any.. Im not even depressed i wanna do so many things… but physically i can’t…

[Analogue45 in reply to Cornelia35]

I hear you I wouldn’t wish it on worst enemy, I feeling same it’s like you are permanently living in your head , drives you round the bend , I get that it’s not depression with depression you can work through it and get over it , but this it’s totally out of your hands , I just try and except things but when I have 2 teenage daughters and permanently stress me out everything is just overwhelming,thanks for messaging

[Littlecook in reply to Analogue45]

Teenagers tell me about it done all that and read the book , but you must take 5 minutes to your self walk away from the problem and have a cuppa ,Unfortunately teenagers dont understand you must look after your self .Have a good weekend.

[Lady4]

Hi and welcome

I think if you try and address the biggest part of the pie (ie the one symptom that is the most dehabilitating) first that may help. Maybe sensory and external focus techniques could play a part.

Mindfulness and meditation and having "me" time would help too as is acceptance to reduce stress/anxiety. Not acceptance that this is how it will always be. Just acceptance that some things may be harder to do right now.

But I here what you are saying and my son has experienced many of your symptoms.

His complex regional pain syndrome was in his thighs with spasms with alternative numbness (just when the pain signal got to much the brain cut the signal off). So hot and cold therapy from recollection and grounding for spasms intermittently to feel the floor beneath him before attempting to stand (adding a sensory element should also help). Also a few times when laid up with spasms an external focus helped and he was up and about as usual. Try the "hoover technique".

For the foot dragging as he previously went over on his ankle a few times, he had a few physio appts and did strengthening exercises with Thane bands and had arch supports (diagnosed flat footed).

Hope that helps with a few of your symptoms. Take care.

[Analogue45 in reply to Lady4]

Yes mine the pain and the chronic fatigue I’m on morphine and tramadol it helps but it still painful, but it’s unbearable without the morphine,

[Lady4 in reply to Analogue45]

Hi, when you mention you have been prescribed morphine, I can't help but think the FND diagnosis is probably wrong. Have you been on the meds for long? Hugs x

[Analogue45 in reply to Lady4]

I’m on tablet for mental health since I was 16 , the pain medication morphine and tramadol 2 years , I don’t bother going to doctors at all they will just say it’s the fnd there pretty much just say you have FND there a website , how old your son ,it must be hard for both of you