New to the group...

[Angel73star]

Hi, I'm 43. Confirmed FND. Would love to connect. Feel free to contact me. Wondering what symptoms everyone has and how you cope. I've been being getting nureomuscular and sensory problems for almost 2 years post surgery. History of migranes and RA. Hope you all are getting through each day and staying strong. X Look forward to chatting.

[kjkla85]

Hi and welcome. Sorry to hear you too are suffering with this FND. I was diagnosed back in July. Have experienced a huge array of symptoms including seizures, fatigue, pain, speech issues, noise/light sensitivity...the list goes on. I've managed to cope with the incredible support of family and friends. I've found being kind to myself and mindfulness helpful.

I don't want to say it in case it doesn't last but I have felt the most normal for the past 5 days I've felt since early July. My speech is almost normal. I really hope it's the start of the end! I still struggled to sleep last night but overall am feeling better than I have in months so really hoping something has clicked back into place. Wishing you the best

[Angel73star in reply to kjkla85]

Hi. Thank you for the reply! Such good news that you are feeling 'normal' again, we tend to forget what that feels like.

I have experienced a lot of symptoms and similar to yours also. Sezuires... I have had jerking in my body and limbs at times maybe it is a Myoclonic type? Had it really bad mid this year and few times like my upper body was jerking or pulling together? Sounds weird.

Legs and arms often do random jerks. I thought it was shine restless body thing but nureo didn't think so?

Apart from all the other weird and wonderful things I've been feeling really weird in my body... like everything is fired up and I'm a calm person so it's odd. I'm not sure if it's related to the fatigue and it's affect on the muscles or just a nerve thing... or both? Do you get anything like that? Like severe anxiety but in my body. So weird lol. I'm not sure how to get relief from it.

I try to sleep but that doen't work because it doesn't stop. The heat is definitely an issue contributing to it. I've tried clinging to an iced bottle of water and had a washer on my head one night and it helped a little and trying to remain calm.

Any tips would be appreciated?!

[Angel73star]

My history

I was dx with fibromyalgia in my early 20s... later around 27 I was dx with RA. It was terrible and all over for 4 years. On methotrexate etc. Then after a lot of praying remission for the past 11-12 years!

In 2014 I had a work accident and then surgery Jan 2015. Had numbness in my right leg first then toes moving and global paraesthesia. Fasciculations increased and keep on increasing in strength and duration etc. They're everywhere when ever they want. Mostly calves feet and elbows shoulders arm etc. Eyes twitch. Had migranes before but are crazy now (nearly 2 years solid chronic migranes). Can't climb stairs. Fatigue very quickly. Weakness to the point I can't type or hold phone. Cramps in legs and toes. Throat spasms. Lose my voice and throat clearing ask the time. Swallowing difficulties.

Bobble head. Tremors in hands and internally. Fasciculations are all inside my abdomen Etc etc..

Vision problems. Balance. Memory. Feeling spazz. Slurr at times and electricity feeling in tongue. Twitches affect my lips and face. Makes ache from fatigue. Sometimes can't move??

Slow thinking and processing. Myoclonic jerking.

The list is ridiculous lol. Oh chest pain etc had heart check ups but ok. Palpitations and racy heart usually up around 100. Yesterday was 106 beats at hospital before nureo apt. I still get a heaviness and strange feeling.

Zaps and tingles in head etc.

Intolerances increased over the years and allergies.

Finger nails have been bumpy and thin nor sure if it's too do with any thing and fingers seem to get pulled or like they've been in water but not?

ANA was pos speckled but last test said neg? RA is apparently still there but not very active. High inflammation which rheumatologist can't pinpoint to anything as not the RA - she referred me on to the second nureologist.

I get pressure and a different type of migrane behind my eyes. Eye specialist said I'm fine but for some peripheral vision and I've got some ptosis on my left side brow.

Nureo suggests there is a link with autoimmune...

I saw my gp today and told him and he was blank and confused. Took on what I said and gave me scripts but really left with nothing as he had for the last 2 years lol. Oh well. I'm changing gps so hopefully she will be of more help.

In all that time I wasn't treated for fibromyalgia and I ignored it as best I could. RA kinda took over. Also I was dx with IBS and it was said it was part of the fibromyalgia? I've not considered myself to be a victim of any of it but the last couple of years have been a challenge. I'm grateful RA hasn't come back to terrorise me, I couldn't deal with that on top of all this. Touch wood it stays away.

Migranes are ruling factor so I've been told and are being treated now. Suggestive that the wrist surgery did trigger it.

[kjkla85]

Wow you have been through it all.

I can relate to the whole body restlessness feeling - when I'm not feeling good (which is usually a sign of an impending seizure) I find I feel really restless and don't quite know what to do with myself. Can't explain it better than that. I have random jerking or movements like rubbing my fingers together or something. Thankfully I feel a bit more settled these past few days. Migraines have definitely been a more regular occurrence in my life this year.

I remember back in the summer I felt like I had weights on my thighs when trying to walk at times. Zaps and tingles in various places.

Not sure if it's a coincidence but started taking b complex vitamins and magnesium a couple of weeks ago. I tried amitriptyline last week but it affected me quite badly.

The slow thinking affects or forgetfulness - I'll think oo let me Google that then I go on Google and can't remember what it was... or random things like putting the tea bag in the fridge instead of the milk, always fun!

I hope you have better look with your new GP. I may try a different pain medication and am awaiting a few referrals. Otherwise just trying to listen to my body and practise mindfulness. Good luck

[Angel73star in reply to kjkla85]

I hope you feel better x it's a tough one. I've been on amitriptyline 50mg now and working up for migrane prophylaxis. I haven't tried much else.

Hope you have a good day xx

[Angel73star in reply to kjkla85]

Hi. Sorry to hear of your troubles. I'm on amitriptyline 50mg and working up. Voltaren for pain relief instead of opiates. Hopefully some goods will come from it. I've tried all the vitamins and none changed anything.

Hope we all catch a break some day soon!

[kjkla85 in reply to Angel73star]

It's good amitriptyline is helping you. I was really pleased when I was prescribed it as many people seemed to get on well with it here but it totally didn't work for me unfortunately.

I hope you get some relief soon x

[Angel73star in reply to kjkla85]

I've not had a migrane for the past 3 days since getting up to 50mg... I'll go up a dose next week to battle the smaller omar going ones. Feeling better in my head is great! Can't wait until it's all gone 😊 all other symptoms remain but they're easy (though not at all) compared to chronic migranes 😥

Have a good week x