Hi everyone. I’m new here and I’d like to know if anyone has these symptoms.
Symptoms include
Balance problems. Feels like my head is pulling me to one side. And can randomly fall over.
Nausea. Pins and needles in right arm. Numb knees. Tingling down my legs. Pain across tummy. Hip joints hurt. Memory problems. Shooting pains in my head. Like electric shock in my head. From my temples and eyes. Back of neck. Whole body tremor. I can feel the tremors but can’t see them. Extreme fatigue. Sleeping is a battle too. I can go to sleep just fine. But I can’t stay a sleep. Tinnitus in ears. And sometimes pressure in my head. But it’s loud!! A quiet room is torture. I have been suffering for many years now. And Iv only just head about fnd. I was told a few days ago that I have this condition. Is it really a neurological problem?
Thank you for reading my post.
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Chihuahua_crazy
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It sounds like you have some migraine issues mixed in with the FND. You should still have MRI brain scans to confirm. Make sure they check you spine. Just because some of it is FND it does not mean you do not have anything else wrong. FND suffers are not supposed to fall as the circuits that are involved in FND are the conscious circuits, the "unconscious" ones stop us falling and should kick in no matter how wobbly we get. I know I used to fall over with migraine years ago. I'd just suddenly drop like someone had switched my body off for a second.
It is really a neurological problem. It's not psychological like it was thought of in the past. It's described often as a software problem rather than a hardware problem but then again there is usually some grey matter shrinkage and amygdala involvement too. There are unfortunately too many still banging the "It's All in Your Head" drum. They are working on changing how it's categorised in text books and the WHO has been rather stubborn on changing FND's status. There are researchers gathering the evidence as we speak and more people are listening - thankfully. You will see the "psychosomatic" tag used, but we know the truth.
Look into the advice on the FND Hope websites. You have to tackle all your health problems and lifestyle to improve. You have to persist through thick and thin. We usually have problems with B12 and D. Many of us have gut issues, inflammatory disease, thyroid problems. We are all a bit the same and individual at the same time.
Numbness may be that your B12 levels are low. If you have your levels checked ask for the actual level as "normal" is often lower that what we need (you can be told normal if they are as low as 200). Above 550 as stated on the FND Hope website, 500 for vitamin D. I have to take B12 sublingually as a spray tablets don't work for me. That way it goes straight into my blood stream. I also use the bioactive form of vitamins that I need as they are ready to use by the body. The numbness takes a while to resolve. Things like magnesium can help too. If you have other health problems you may have to discuss things with your doctor before trying supplements.
You have a lot to absorb and get your head around. Don't think you can push through this as you have the fatigue it will only make your FND worse and you could end up with the non-epileptic seizures to add to your misery. You have to fight smartly, with the right information rather than physical effort.
There is so much to take in. The good thing is I now know I’m not losing my mind. Iv seen many specialists. And had many scans. With no answers!
I do have low vitamin D. I’m taking tablets for that. I’m diabetic. Have gut problems. Terrible cramps in my legs or tummy. Today iv got up with eye issues. Yesterday was an ok day. But today I’m struggling to see. I have a ticket in my ear and throat. This may sound crazy but I don’t sneeze. Not sneezed in 8 years! Lol.
I can cope with all these symptoms. What I found the hardest was losing all my friends. One by one they left. Not knowing what to say to me. Or they think I’m playing on my symptoms! I have my mum and my daughters. But it’s not the same.
Yes, I've lost every friend except 2. My best friend and an old colleague who is disabled too are the only ones to stick around (apart from my husband that is). It's hard and you certainly see people's true colours. You also see a different side of society that you never expected. It's like passing over an invisible line. FND can take it's toll on your mood so you'll need all the support you can get. There is an advocacy team on the FND Hope website if you are having problems getting the right medical care or social support.
I'm glad you have everything checked. It's reassuring that you don't have a muscular skeletal cause. It means you can improve and get better. There's never one answer for us. It's usually the last event that tipped us over is just another straw, it's just the one that broke the camels back so to speak.
Magnesium can help a lot with some of your symptoms like cramps, but being diabetic with other health issues maybe speak to your doctor before trying it as an oral supplement. It can settle nerve pain as the body can use it instead of calcium as they are similar enough. There is magnesium oil that you can apply topically for cramps. It works like magic for me and my husband. Just don't put it on broken skin or very hairy areas as it can sting like hell. Certainly do a patch test first. I use it for menstrual cramps too. Takes the edge off.
I know they are using a form of vitamin B6 called P5P for diabetic neuropathy. Maybe discuss with your doctor to see if will help.
You'll find your symptoms may fluctuate with hormones (I'm assuming you are female, but apologies if I'm wrong). You will also have worse symptoms if you have an infection. We are often worse in winter. Sometimes it feels like I'm worse because there's a Y in the day, but I usually find a reason if I think about it.
Sorry that's a lot again! I don't mean to over load you.
My “best friend “ used my illness against me!! I lent her some money. Months down the road I needed some money and told her I needed it back. Well she told me she did pay me back! I know she didn’t. But I still doubt myself! My memory has been getting sketchy!
I also have a complex pain disorder!
Stress seems to be a trigger. The cycle continues.
Iv not had a mensural cycle since I was 32. But my hormones are normal! My symptoms have been dismissed for years. Dr said it was down to my pain meds. Do I came off them. The symptoms only got worse! It’s only the last 6 months my dr started listening to me. Fnd is so new to me. But it all is making sense!
hi again you see I'm so daft i send the message without even saying what i was ment to say my balance is out the window and i get the shocks in my arms and legs and what feels like a crushing of the ribs which takes my breath away
i get like a feeling in my arms and topd of legs like im being stung by i like to call them fire wasps as it hurts like hell bit then it goes numb
the body is a strange thing
all these things get me down as people can't see them them so they think its all in your head.
if it was all in my head and i had control over it some doctors and nurse are the first to meet my fire wasps but i can only dream lol
I also have problems getting my point across. It either makes me cry. Or makes me forget everything I needed and wanted to say. Its so frustrating at times and really funny at other times.
I to have like stinging or burning across my tummy and down my leg.
I have so many symptoms that I just can’t remember all of them. But when I read some posts it’s like I just fit! All the puzzle was put together. It’s amazing really. I felt alone for a long time. Don’t feel so alone today.
A lot of what you say resonates with me; tinnitus, menierres is another problem ( to much fluid in inner ear) causes me to have memory lapses, bad balance and if l move wrongly l can tip over. There are tinnitus specialists you can be referred to at your local hospital. When mine is not good l play music this helps me a lot. The hospital can also supply you with either a tinnitus pillow or a machine. There is also medication for it. Don’t be frightened to ask your GP for help. I worked for the NHS for twenty years and GP’s are normally happy to help. Good luck.
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