Whats next

[walking52]

I've recently been told i have nead non epileptic seizure disorder after having a numbet of seizure they said it's part of the fibromyalgia does any 1 else have nead if so how do you cope with it and what meds do u take

[bobbybobb]

I haven't heard that before.Have you been given the wrong information.

[walking52 in reply to bobbybobb]

I saw a private neuro and thats what he told me also got to go to a movement clinc at salford.

[Evie76]

Hi walking 52, I'm just out of 3wks in hospital and have been diagnosed with functional neurological disorder (fnd). I have never heard of it before but I know seizures are very common with it. It was a consultant neurologist who told me that's what I have. I'm not saying that's what you have but I know we get fobbed off with everything being put down to fibro. Am I allowed to say a website that the neurologist gave me to see if that makes sense to you? Or is it a no no putting up websites here? X

[walking52 in reply to Evie76]

I felt like i been fobbed of as i had body jerks for 18 months then seizures started seen 1 nhs neuro and 1 private neuro both said nead.so i just have to take what they say

[Evie76 in reply to walking52]

It's not easy I know what that's like. Sending you hugs xx

[walking52 in reply to Evie76]

Thank you i send hugs back i just hope some1 comes up with a cure 1 day

[bobbybobb]

seizures are'nt normally associated with Fibro I dont think

[Mdaisy]

Hi Walking52

I believe I have heard this before as I am pretty sure the founder of FibroAction experienced seizures LindseyMid in the past.

I don't think it is listed as a symptom as I don't think any correlation has been definitely confirmed. I think this experience is rare especially as many people with Fibro take things like Pregabalin/Gabapentin. As Fibro needs more research I am unsure a medical professional can say it's due to your Fibromyalgia as it may have another cause.

Therefore I guess I am saying we just don't know if it is linked or not desquinn will be able to elaborate I'm sure.

Emma

[Lady-Minx]

I have both fibromyalgia and NES. I’m also being treated for chronic pain from a spinal injury. It’s not unusual to develop non-epileptic seizures when dealing with a painful, life altering disease such as we have. Typically, they treat us with pain killers and antidepressants along with some sort of talking therapy. It’s not to say that what we are going through is not real, because it absolutely is. Mine can last for over an hour sometimes. It’s extremely painful and exhausting. When these attacks occur, they attack my entire body. The best way to describe it is like every muscle in your body goes into some sort of hyper-spasm. It can even attack the muscles spasming around my organs. It’s hard to breathe when this happens. Truly, I wouldn’t wish this on anyone.

I just wanted you to know that you’re not alone.

[walking52]

Thank you i am just glad other people understand it was a frighting experience not just 4 me but my family i feel like i've been ripped apart my right leg is very painful having to use a stick only on painkillers at the moment .ive never heard of nead been related to fibromylgia