to go from working to doing nothing it feels degrading and useless. I've had fnd now for 8 years and I'm still trying to come to terms with I'll never work again and that there's a good possibility that I will end up in a wheelchair unfortunately Im in the UK and resources for fnd are shit.
I have a burning pain or stinging sensation down my spine. The way I would describe it is its like having nettles rubbed all down the middle of your back. I also have spasms in my back and hips looks like I'm possesed by something I lose all control of my body and have to fight to stop myself from falling on my ass.
It's degrading when you have to just sit there and watch the world go on around you while you try to make the next 2 steps hoping and praying that your legs aren't going to buckle or even cease up on you making you then move like a rusty tin man that needs physical help to move at all. I hate the people that stare and I feel so useless when my partner has to do everything for me and the days when I can't get out of bed without help.
FND has been the shit of my life and I'm going to be 40 soon I know that it's to late for me I just hope I can help others through there FND.
thanks for listening or reading my rant and I apologise if it has annoyed anyone.
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terry9griffins
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Do ureself a favour mate just get the wheelchair , i know its a big chunk of pride you will need to swallow trust me just do it . Ive had fnd 8 years witb similar symptoms as you with added other stuff and my right leg has completely forgot how to walk but 3 years ago i bit the bullet and got an electric wheelchair and wow has my life changed im able to walk my dog(were talking 14 miles of walks a day ) go to shops , visit family, go to cinema and all on my own since i live myself. I dont know if uve had any pysc therapy but u need to change the way you think (try and look at the positive in everything , absolutely no stress , be good to yourself), find a hobby to occupy ure mind (i make models out of clay, walk my dog, take long baths n watch movies in them, read books) anything that helps you relax , and most of all you need to realise you family just want to help and they need to realise you dont always need help if you do you will ask for it , its easy mate if u stick at it power on through it chief you can do it 💪I have never posted to any one before but ure story got to me since its exactly what i went through and i know how hard it is . Dont get me wrong there will still be bad days feck im just after a 4 week episode but still sitting here smiling waiting to go to doctors to find out if i have tumor and i. Not stressed because i managed to change the i think. I mite i add ive been roughing it with only paracetamol and ibuprofen or asprin
Have that extra bit a bacon , sleep an extra half hr, oh that chocolate brownie looks good does it fekin have it mate , be good to yourself do what makes you smile take the kids to the park if you have em anything chief
I'm sorry you are going through so much. Must be difficult at your age with family. I'm not as bad as most, but I do have other health problems plus I'm a carer. At the moment struggling to keep positive with FND symptoms, the jerking and constant pain down the left, don't sleep well because of the pain, don't tolerate pain meds. I have been down the spiral of depression, writing helped get the anger out plus music calms me. While my children grew up I wasn't functioning because of depression, I can't get that back. If you focus on anything, focus for them, fight for them. FND resources are bad everywhere, I'm regional Australia. I've been to a couple of pain management clinics, 20 yrs apart, the video that helped me the most was Arthur's amazing transformation on YouTube. Gave me a reason to fight. Please take care. Moni
Hi, I am so sorry to hear what you are going through but 40 is still young so please don't write yourself off.. I have been in pain with no break since aged 19 & now in my 50's. I was told FND but when they could only find medical problems I was signed off. So I scald, trip fall have memory issues & some choking from some neurological condition & no one is even looking at it. I gave urgent cardiac, several organs separately that need a lot of attention so I decided to park it all & deal with my cardiac first. There is no help, no answer & no one medically even trying in my case. Never had lumbar tests etc as in beginning it was thought to be MND, as my mum & aunt died from it. Rapid form. But that is the only thing they ruled out so they chose FND as a label & then didn't want to help especially when I told them about choking, dropped leg etc. I have literally Been managing alone. I am in Ireland so I get how services can be. Yet the cardiologist was amazing & I cried afterwards simply because someone medically was being respectful and informative. I guess what I wanted to say to you is I am 40 years in, including surgeries etc. Don't stop believing things can change it is about the right help. I hope you get a break soon, but please don't feel life is gone (I have felt like that after perforating due to medical neglect at aged 25 & a lot of times since) but all it takes is one Medic who knows & understands to turn it around. I had that at one time & although he is long retired I will never forget him for literally saving my life at that time. You are valuable, worth it & still young! So think about what you need & if you decide to use equipment to help you it will have been a decision made by you only.... Thinking of you & sending good wishes, Carol.
Thank you for your reply and it's good to know that there are some medical staff that care. From what I've been told the Fnd clinic is kind of my last option let's hope someone there has some kind of idea what's going on. I've been signed off from the hospital and there trying to find different tablets as I've put 4 stone on since being on pregabalin, now they tell me I need to loose the weight due to my liver getting to high enzyme levels which causes scarring and chorossis.
Thank you for your kind words and if you need to ever chat just message me.
Kiora Terry, from NZ can totally understand what you have been through our 29 year old daughter was diagnosed with FND 2 years ago . And we all have been on a roller coaster of ups and downs this debilitating illness has robbed our vibrant , self confident , school teacher a normal life. What I struggle with is the absolute uselessness of the medical doctors who don’t have a clue on any form of treatment
It’s ok to rant. This site has given me and many others a forum for such things.
I agree with several of the replies you have received already. Be careful and proactive with yourself. The bottom line is that FND (and whatever other stuff) is our reality. My battle plan:
Identify • Acknowledge • Adapt • Overcome
Living with FND takes courage. It is hard. It is constant.
I first had symptoms in 2010 after lyme disease and was off work for over a year. At that time antibiotics helped as did TENS machines in controlling the involuntary movements although didn't stop them or the pain and fatigue. Then one day in 2017 I stopped walking. The paramedic and my neighbours thought I'd had a stroke. I had always valued myself on how useful I was. I was who you rang when you wanted furniture moving, heavy-duty gardening or needed help filling out forms. I loved my job which involved talking to people and driving around sharing my knowledge. I've not worked since 2017 and things were dreadful until I had a month stay at the neurology hospital at Queen Square London. As well as teaching me techniques to help with the involuntary movements, they identified that half the time I barely breathe (explained lot of the fatigue and other symptoms) and also helped with my mental and emotional health in dealing with being broken. My old life is gone and thinking about what I expected to be doing now is pointless and makes me miserable. At first it was very hard not to focus on everything that was wrong. Very, very hard and I worked extremely hard at it. At the moment I am building an IKEA wardrobe which in the past would have taken probably 2 or 3 days. I'm on week four, but I'm getting it done. This afternoon I started making a pond (which have been trying to do for 2 years). It'll take me about three more weeks. It's only 3 feet wide. I dug it out with a trowel. Sitting down. Within a month I'll have a lovely little pond and will have finished the wardrobe. I'm not well enough to look after my grandchildren but I can spend time with them which I love. I can't compete in show jumping and long distance riding competitions but I can potter about in the wood on a well behaved pony occasionally. Not what I wanted but it's good enough. Ask your family and friends what they love about you. When I was brave enough to ask mine, it turned out it was not what I thought they loved me for, but for being kind when they were in trouble and being happy when they were successful. I can still do those things and they still love me. I hope your life will become good enough for you soon xx
I know it is difficult but one needs to stay positive . It took 3 years to receive a diagnosis so have now had it 4 years. The 3 years were some of the most difficult of my life. Try and not let this misery control you but find a way to control it.
For everyone who is struggling to walk, my daughter was diagnosed with FND when she was 13. She struggled to walk and as day progressed, her ability to walk dwindled. She went around on 'giraffe' legs. We took her to the Mayo Clinic's Pain and Rehab Clinic that lasted 3 weeks. Within 2/3 days, she was walking normally. Their physical therapists tricked her mind with distractions so she retrained herself how to walk. Please, if you struggle with walking, look into a pain clinic that can work with physical therapy. My daughter 'graduated' from the pain clinic the week that everything started shutting down with Covid. If we hadn't gone, she would be bedridden right now. Please don't give up hope. Check the best hospitals in your country to find someone who can help you.
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Don't give up hope everybody
Healthcare is a joke for FND-Major frustrations
Vision problems
Pulse in ear 
