funcional neurological disorder

[Catlady1973]

Hi this is going to sound probably weird but I have nerves that I can feel them peeling and they feel like they are peeling off these nerves its like wire and its causing a lot of issues does anyone come across this feeling if so is it linked to fnd there are so many sensations as you will know

[tabey]

Hi I understand what your saying I found gabapentin very useful to soothe this horrible pain hope this helps

[Catlady1973 in reply to tabey]

Hi I've tried gabapentin and nope never even touched the pain and ive tried others nope but I've been in contact with a clinic called cura leaf its medical cannibus they said it won't treat the fnd but will help with the pain so just need to see whats going to happen

[tabey in reply to Catlady1973]

Best of luck please keep me informed on how you get on it’s such a horrible pain

[Catlady1973 in reply to tabey]

I yes will do Saturday the pain it was going down my spine oh boy I couldn't hardly move the pain with fnd is horrendous as you will know sam

[Prosaic_One in reply to Catlady1973]

I was on Gabapentin for over a decade and it never helped. I finally stopped taking it and I feel just as awful as before. The only thing that tackles my pain and helps with mobility is cannabis. Cura Leaf’s a good company. If you’re just getting started, I’d just share that the products made with only CBD (no THC) did nothing for me. The psychoactive stuff is all that works. I say that just in case you begin with only CBD and get no results. Don’t give up & find a strain that works for you.

It helps me with my balance and mobility, pain relief, a sense of muscle strength, energy, and sleep. I was self-medicating years before it was legal before my doctors forced me to stop and put me on high dose narcotics, which did damage to my heart. Hope the cannabis is a good fit for you too!

[Catlady1973 in reply to Prosaic_One]

hi thanks for replying oh my god the drs they should have known better for goodness did you do anything about them thats ridiculous drs now some are just an absolute joke and you wonder how the hell they passed,curaleaf they are having another team meeting on Friday as they were asking about my mental health etc so will should get a response on Friday but at the moment from my initial appointment that went well and have said yes she said that I can get it for pain and I have mild autism and she said it would help with my autism as well don't know how I got told that they treat fnd but now been told not will let you know how it goes sam

[Prosaic_One in reply to Catlady1973]

I’m glad you’re progressing through the “program”. Sorry it took so long to respond. I’m in very bad shape. My treatment by my doctors made me terrified of ever going back. It’s what has me afraid to leave my house for 2 years. My side effects were always ignored and I’ve been put in numerous dangerous situations due to overprescribing meds. This diagnosis has destroyed my life and my body.

Hope you’re doing well. 🤗

[Catlady1973 in reply to Prosaic_One]

Hi im not progressing no drs before I was diagnosed in 23 I swear the way I was treated im disgusted I got told I needed a physiatrist and phyciatric medication then also I was getting my self stressed and worried about nothing another oh don't know what your talking about another refused any scans treatment then there was this one it was a battle to get referred to neurology had scans done and everything was fine so I get accused attention seeking she gets to a back clinic no good so I had to plead to get referred to neurology it was a joke and when I got diagnosed not one apology im not with them anymore they this one dr was giving me this that and the next nothing worked and then I kept getting told by another dr its fnd you won't get better yet I've been told that you can as its not a hardware problem re train the brain the drs nowadays are shocking I don't know how many of them pass to be drs you haven't been out your house for 2 years that is awful what a shame fnd I curse it I really do I've got a lot of issues with it its horrendous yes its destroyed my life I had plans and things I used to do I can't im now having to use a walking frame now I really curse this im sorry for what your going through take care sam

[Prosaic_One in reply to Catlady1973]

Good God, do I hear all the stress they’ve put you through! I’m so sorry! It’s that exact treatment that caused me to develop a phobia of doctors. Years of them throwing all kinds of meds at me while nothing worked. When nothing works, they have the nerve to get frustrated. We’re the ones having to live with a rapidly declining quality of life.

In your case, I really don’t understand you not immediately being sent to a neurologist! My neurologists have been mostly useless but they’re the ones who are supposed to understand the brain, so where does that leave you? Ugh, I too am disgusted with how we’re treated. FND has stolen everything from my life, including any hopes for a future. I wish there was something that could be done. I don’t believe they understand how to treat this illness. They could, at the very least, show compassion and a sense of scientific curiosity to attempt to find a way to make our lives easier. It’s inexcusable to slap a diagnosis on us and send us home to suffer alone.

The cannabis is the only thing that provides me with any pain relief and stops the spasms. I can’t afford to have it all the time so I am mostly in intractable pain with no way out. In my case, while I can see a neurologist who’ll do nothing, my insurance won’t cover psychiatric treatment. I don’t even know how that’s legal. If I had the strength, I’d talk to a lawyer but that’s off the table because I have no one to advocate for me.

I hate how much of your pain and sadness I hear coming through your words. I know it well. No one should have to suffer like this!

[Catlady1973 in reply to Prosaic_One]

Hi yeah I get really angry frustrated the drs at my old practice they were just a joke and yeah good at throwing tablets at you thete are times I have phoned nhs 24 wait for this all I get is have you taken any paracetamol im like I take it you don't know anything about fnd paracetamol wouldn't touch it its a waste of time im angry I ve got this I was saving to go on holiday now I can't because of the way it affects me I've now got a bloody walking frame its just a joke neurology is a joke he said my brain is like a out of tune piano thats helpful eh no support or help it really gets me why there is no help out there for this yeah I've no one to advocate for me either I can't believe how disabling this condition is I had never heard of it before it was a battle to get referred to neurology when I did he told me I had this condition said no quick recovery but you will get better and gives me a leaflet and off I go no explanation nothing I can't believe how painful this is as well the spasms I get in my legs blooming sore painful and at times I end up with a catheter retention I feel very alone with this as well you get diagnosed and off you go look after yourself

[kev60]

Hi, I occasionally get a feeling like something is crawling under my skin, I was told that signals from my brain had sent signals down the nerves (like a small electric current) and as they reach the end of the nerves people get different sensations in different areas. It can be FND related but also could be something else ( always get checked) , I often get pins and needles in my hands and was referred to neurology technician and they found slight carpal tunnel, but mainly cubital tunnel syndrome, the signals sent down the nerve which runs down the outside of your arm across the elbow where it gets trapped and caused the pins and needles and clawing of the hand and no feeling ( I have to wear a brace on my arm to keep the arm straight at night) . It was weird testing they send electrical (small) through the nerve and the probes pick up how good or bad it is . Also found out that the pain in my elbow ( on the boney bit) was an indicator. It sounds likely that it is FND related as all my issues with FND are nerve related. I had a reaction to Gabapentin, and was told this caused my body’s immune system to attack healthy cells and my brain diverted signals (forgot how to walk forward) and had to learn how to walk again, I now look like I am drunk and there is no more they can do so I have had to learn to live with it. On bad days I can stumble 2-3 feet on a good day it’s only 1-2 feet. Sorry I seem to have got into the flow sorry this is so long . Lol, hope you find some help. Good luck. Kevin

[Catlady1973 in reply to kev60]

Hi this is just so horrendous brick hard heavy nerves the ones like wire pulling at my insides I've been in contact with a clinic it deals with medical cannibus they said it won't that fnd but it will help with pain I need to see whats happening

[Shimmyaway]

I had this crawling sensation ( called paresthesia) .it was the direct result of taking an SSRI and stopped when the drug taking stopped. As Kev says, it can also be caused by RSI (repetitive strain injury) when the nerves are physically irritated. Nerve flossing which I think was mentioned in a previous post can help with that. If your nerves are irritated through nervous dysregulation of your stress response system, you might need some calming strategies. All trial and error with FND... so keep trying. Best wishes

[Catlady1973 in reply to Shimmyaway]

Hi thanks for replying what is ssri yes nerves definitely affected i sometimes i get the feeling crawling climbing from waist down right to feet

[Shimmyaway in reply to Catlady1973]

SSRI stands for selective serotonin reuptake inhibitor. What these drugs do is to increase the amount of serotonin in your blood stream, as serotonin has a calming effect on the body. The names of some common SSRI's are ....citalopram (Celexa), escitalopram (Lexapro), fluoxetine (Prozac), fluvoxamine (Luvox), paroxetine (Paxil), and sertraline (Zoloft).  My experience might indicate that too much serotonin can give you the crawling feeling .. so if you are on any of the above I would go to your GP and find out what the score is....as too much serotonin in the blood stream is harmful...and let's face it , they never measure your serotonin status before they give you the drugs.

[Catlady1973 in reply to Shimmyaway]

Hi no im not on any of these but I have in the past been on setrailine

[MONIREN]

I'm sorry you are struggling to find a solution, FND is shocking. My biggest problem is I'm like a wound up spring that has to jerk to release. I'm like that at home as well as in public, I am going through stress, but does my body have to tell everyone else that? Lol. It can be one or a quick succession of them, very exhausting. Don't stop trying! Take care. Moni

[Shimmyaway in reply to MONIREN]

I have found that progressive muscle relaxation on a daily basis really helps to release the tension in my wound up muscles ..as do floor exercises .. that helps with sleep too.

[Catlady1973 in reply to MONIREN]

Yip fnd its horrendous i get this with my legs they start jerking go into spasm then rigged and the pain oh boy apparently I've seen on amazon that you can get a wrist band and a card etc to let people know about fnd if you need help then they know whats wrong yes its very exhausting the least wee thing im nackerd at times I have to lie down I had never heard of fnd but it seems to be now very common I can't believe that the brain can do this

[Lady4]

Hi CatLady1973

My son was experiencing electrical sensations. He said the pain was replaced with a numbing sensation after a week (still there) and then had all over weakness (plus cold symptoms on and off).

I think the buzzing was the symptom and the pain (due to a new and frightening sensation causing high arousal "brain on alert") and the weakness, was his body trying to regulate and then layer on the cold and he got weaker. Just last week he experienced what we think was a rib a sublaxation, so that isn't helping either.

[Shimmyaway in reply to Lady4]

Who was able to diagnose the rib subluxation ? Rib jerking (one sided) is a common occurrence with me .. and accompanied by noises ..heat seems to help.

[Lady4 in reply to Shimmyaway]

Self diagnosis not been to GP. You can get FND sublaxation but wasn't sure if you would still hear the subtle cracking sounds and the ribs mis-align and re-align. I posted the question to the other community as I saw the same question was mentioned in the EDS. POTs, Hypermobility (Re-Active Zebra Community). No answer as yet.

[Shimmyaway in reply to Lady4]

Thanks for the reply ..will wait to see what the experts say. There is nothing subtle about what I am getting, but at least it is pain free, apart from twinges in the back of the rib cage. It would seem FND has no limits to its impact.

[Catlady1973 in reply to Lady4]

Hi thanks for replying how's your son doing i get the cold feeling aswell my feet get frozen my body as well I get a numbness in my hands like they have gone to sleep then get a fuzzy feeling as well get it in my feet also what is rib subluxation fnd is just so horrendous my right leg is affected right side my vision bowel and bladder mobility i now have to use a walking frame sam

[Lady4 in reply to Catlady1973]

He still has weakness and dull electrical buzzing sensation. The sublaxation was a partial dislocation (a mis-alignment - common in althletes and certain hypermobility disorders).

I find with FND you have to start with the most dehabilitating symptom and if you notice any signs before you can try and regulate your body (ie if suddenly feeling flustered, hot, have a cooling towel near by). There are several triggers, stress and anxiety doesn't help so practice some self love and compassion.

You might even find a cosy blanket may help. I often see my soon cocooned in one. Weighted blankets are good for calming but don't get one too heavy, I think they recommend not more than 10% your body weight but double check first before you buy.

[Catlady1973]

Hi I can't believe how fnd is so disabling and the pain it comes with it and different issues you have with it everyone is different on how it affects but I will look into the heavy blanket thanks sam