First of all, stop being petrified it will only excaibate your symptoms. You say you have a neuro appt’ in 2 weeks, may I suggest that you write down your symptoms, the worst one first and make a concise list of all of them. Don’t hand the list to the neuro but go through each item on your list with them,. I suffer with spasms and am taking Clonazepam and Keppra, which has helped a great deal. I still get them but not so bad as I did. I am also on Gabapentin but a low dose as when I try to increase it I get horrible side effects. Unfortunately I don’t know anything about Pregabalin so I cannot help you with that. Wish you the very best of luck for 2 weeks time and do let us know how you get on.
Hi Andy, as Janet said, please try not to panick. A fair few in this section have an ME/fibromyalgia type diagnosis, so you are certainly not alone.
As you probably already know, what works really well for one, may not work for another (our brains being the wonderful, ‘individual’ organs that they are!). Gabapentin and Pregabalin (Lyrica) are both prescribed for neurological pain. I, personally, didn’t get much benefit from Pregabalin and am now trying Gabapentin. Just see how you go, it does take some time to build up in your body but I hope it works for you.
The thought of going to see a neuro is quite scary as it makes things seem all that much more real, but they are only another doctor (although a specialist one). The good thing is that he/she should be able to run a whole series of tests, in order to exclude MS, that you may not have had before. Lots of things can mimic MS symptoms, even vitamin deficiencies, and a lot of them are treatable.
I’m a fan of pregabalin. It did take me forever to get up to a pretty pathetic 100mg a day because of side effects, but once those wore off I have been very very happy on it: it’s made a huge difference.
Good luck with it, and with the neuro appointment: please try not to worry about it - just keep focused on your main symptoms and be prepared to explain more if asked. Take someone with you too - an extra pair of eyes and ears can be very helpful.
I too am on pregabilin 2x75mg, been about 2 weeks now and didnt think it was helping.
However my symptoms seem to be less severe,though yesterday, i couldnt remember my other half coming home or going to bed. Not the first time this has happened mind you
Thank you everyone its really nice of you too take the time to write back, its nice to know someone has taken the time to write and is thinking of you.
I do hope my case won’t be dx as Fibro again. as my symptoms are so much worse than before, I do have spells when it seems to get worse, 2-3 times in the last 6 months and each time the symptoms seem to remain.
it all started to get bad in January of this year I had excrutating headaches, I was admitted to hospital for a suspected stroke, I had a lumber spine puncture which come back specifically for no stroke, I constantly have bad headaches and pains in my forehead, however top of my list to the neuro would have to be constant burns in my legs, that’s why I was on Gabapentin which now has stopped working,I will post oh here and let you all know how the Lyreca goes 4 * 75mg per day
What was / is the worse sympton you guys had?
looking forward to hearing from you all again with my thanks forever
I too have the burns in my legs. Its a horrible feeling. Its on the front of my thighs.
Like i said, ive only been on pregabilin for 2 wks and its not really helped that part of the symptom. The thing im struggling with is the lower back pain. I cant remember the last time i was able to walk properly.
I had the so called hug on saturday, which felt like something was trying to pierce my heart and lungs, and was wary of taking a deep breath incase something did pop. Then sunday the extreme fatigue, and loss of coordination, and memory. Since then my legs have burned like hell and my backs killing me
Hello I was just wondering whether you might get reddening of your legs at all? , I take B12 injections (cobalin) every 3 months and yes I have had an extremly bad back, Im always fatigued too, I wonder you say about your memory loss, I sometimes struggle with words is this how you are struggling, thanks for your kind post and to the other kind people thank you too
I am reposting this as my Lyreca doesn’t seem to be working, I am not on the starting dose.
Is there any alternative, I was on Gabapentin and after 4 years of suffering hell and this working
that stopped working, the burning pains in my legs seem to be getting worse, I cannot stand trousers
rubbing against my legs and put a pillow between my legs to stop the rubbibg together
I would really appreciate any help, I am desperate today as the burning pain is worse than usual, maybe I might get my ice pack out and see if this helps
I am on pregabalin 300mg i ws on 600mg but felt so dizzy, so have gone back down .When i first went on it i found it did keep the aches and burning sensation at bay.But its al back with a vengeance now!
My legs ache and hurt all day and then as soon as night comes the burning starts,its now started in my feet in the day .I feel for you as its such a horrible symptom .Im seeing my neuro on monday so i hope he can help !
