Hello all,
I’m wondering whether someone can help me with a strange symptom i have been having recently. The best way i can describe it is if you were incredibly nervous to the point that your body, but particularly my limbs feel light, tingly and shaky. Like i am in some sort of neurological overdrive. I did think that it was some kind of fatigue at first as my natural instinct is to go and lie down and let it pass. Except, this doesnt really help. If anything, it makes me more aware of it. I actually find it easier to just try and push through it, which from people’s explanation of fatigue doesn’t really fit. I should add that i am coming out the other side of a relapse in my symptoms which started with pins n needles and then progressed to constant twitches in my legs and a general tiredness in my legs whilst standing still. The twitching hasn’t stopped (yet!) and it been around 6 weeks since it all kicked off. This latest symptom though is wrecking my head. I am trying to establish a pattern and wondered (hoped!) if it could be related to when i started taking 10mg of amitriptyline a couple of weeks ago. I have taken amitriptyline in the past (30mg at one point) and haven’t had such a reaction. I’ve looked at potential side effects online of course and it lists just about everything. I am going to start using a diary to discuss with the nurse next time i see her as i feel like i am calling her everyday at the moment. However, i just wondered whether anyone had experienced anything similar and whether this was a common symptom or perhaps just a side effect? I have trawled the forums on here and shift MS but haven’t yet found an answer
Thanks everyone
Hi oneinthree, so glad you posted this. I have had similar. I said to my daughters its like being constantly stuck in FLIGHT or FRIGHT mode…
It just comes on and makes me feel weird nervous, anxious and tingly all over i hate it.
I did some research, we can have a higher adrenalie response to anxiety which kind of made sense to me, as its an anxious time and only started with Covid.
I check my vitals everything is as should be, good pulse, BP, oxy and temp. so i decided it was MS pulling my chain. Now when i get it I do stuff, i listen to music, or watch something, or talk to someone, i might skype my sister and it all helps.
I have branded it a mystery. I dont take meds only one 2mg diazepam for spams at night but thats been ongoing.
I decided it was anxiety driven and an overload of adrenaline. LOL.
Not saying yours is that but i TOTALLY understand how you feel its not actually very nice and you think your going crazy. so we can go crazy together lol. xxxx p.s. it could be a side affect. but i do have same.
Ah, ok, this makes a lot of sense as i am limping through the process of being diagnosed at the moment so anxiety is off the grid. Although i wouldnt wish it on anyone, it is reassuring to know that it is not just my weird symptom and probably explains the ‘bounding’ pulse i have at the moment despite all my vitals being ok too.
Its a well designed disease this isn’t it - breeds and feeds of stress and anxiety. Anxiety not something i have had an issue with before thankfully but i suppose its just a case of finding ways to manage it. Your post prompted me to read the leaky bucket analogy i.e. anxiety builds up slowly and when it overtops, fight or flight is triggered. As were operating near to the brim, we overflow more regularly so we need to find more leaks - exercise, yoga, distraction or whatever.
At least i am embracing new things…i certainly didnt think that i’d be on a forum talking about leaky buckets 6 months ago.
Thanks for the reply…i will keep going with the amitriptyline for now and just try and chill out more! good luck.x
hi thanks for the LEAKY BUCKET not seen that before.
It took me from 2000 to 2016 to finally officially be told i had progressive MS. WHAT has changed for me? Not much to be honest, just i am respected more i suppose, and I get financial help with PIP.
I just live my life the best way i can. Anxiety is insidious. I tell myself to stop being a baby lol and breatheeeeee xxxx
good luck on your journey. x
I’d been having issues for the last couple of years and I’ve only recently been diagnosed about 2 months ago. Before that, I knew something was not right but all of my tests were coming back negative. Doctor prescribed meds for anxiety last year, I didnt know why I was so anxious all of a sudden. When they weren’t finding anything I was getting more and more anxious. No one wants to be told they have ms, but when it was diagnosed and I now have an explanation for all the things going wrong, it’s actually massively calmed me down. Still anxious but no where near as bad as I had been. When you get an actual diagnosis it’ll probably calm you right down and take a weight off your mind, hope that helps
A word of warning amitryptyline can cause some people bad side effects.I took it and was very angry and moody and had suicidal thoughts and felt very nervous too.As soon as i stopped it i felt better.
I have just spoken to my doc today cos I was feeling the same. My blood pressure had gone sky high and was feeling shaky and nervous. I have been on amitriptyline for about a month and just upped the dose to 50mg over the last couple of days. I am also on mirabegron, which apparently can raise your blood pressure. She gave me some blood pressure tablets, stopped the mirabegron and gone back to 25mg of amitriptyline. Please check your BP as well. Hope you soon feel better.
Thanks for the replies everyone. I will take it up with the nurse once i get my results from the LP. I feel like i am asking her a new question every couple of days at the minute so trying not to annoy her too much. Will let you all know when / if i get to the bottom of it. Take care folks
Hi jaydee, what dose of amitriptyline were you on? I`m sorry to read how bad you were on it.
My daughter cant take 10mg every night, just occassionally.
For me it is a wonder drug! Been on it for 20 years. It really kills some of the nerve pain I had. I have tried to reduce it from 50mg at night, but the pain returns…feels like sitting on jagged glass.
Boudsx
Hi 1 in 3, I`m thinking that once you get your diagnosis and start to get your head round whats the best way forward for you…the anxiety will settle down. I hope so.
Best wishes Boudsx
I think it was 30mg.My other half was on it a few yr ago and he was very nasty on it too.As soon as he stopped he went back to being nice lol.