Hi guys, Is anyone else on this? I’ve just started it. Is it any good??? Getting it very hard to come out of a relapse. Had optic neuritis 10 weeks ago but the nerve is still imflammed as per the neuro yesterday. Still in a lot of pain and vision rubbish. Biggest problem of all is the exhaustion though. Can hardly function. Tried to explain the exhaustion to the neuro yesterday and I sounded like a crazy person! Not sure if anyone on here will understand me… But I’ll give it a go. It’s like the “3pm slump” except it starts around 11am and doesn’t disappear for the rest of the day no matter what I do unless I sleep. My head is fuzzy,can’t concentrate on my work, memory gets so bad, and I can’t tolerate loud noises at all. Even someone clapping or a baby crying or a too loud TV. I feel like my head is all wrong inside. not dizzy or imbalanced but just off…It’s like sensory overload.iv heard of kids with autism needing a sensory break and getting wrapped in a big blanket in a quiet dark space- that’s what I feel I need!!! Does that make any sense to anyone?? Please tell me I’m not mad…
I ‘get’ it!!! The fatigue is awful and im on modafinil (2 pills per day). Though I dont think a relapse is helping. Oh that 3pm slump is not nice!!! I sometimes get the loud noise thing usually wen im even more fatigued than normal. Hope this helps put your mind at rest a bit that your not mad. Kate x x
I feel like this every day, i get up and i am not that bad,then when i have been up an hour or so, it overwhelms me, i know just what you mean, and trying to explain it to anyone is impossible,mines that bad, i can hardly function,and it makes me feel really down too.
its not nice at all.
Jaki and Kate thank you for helping me see that I’m not the only one and that this is too my MS and not me just going mad!! I tried to explain it to neuro but it all just came out wrong… So I gave up and told him that I’m tired all the time…!!! Didn’t go into the details in case he thought I was nuts!!
Fatigue is the biggest problem that nearly all people with MS have. Exhaustion out of all proportion to what activity has been done is very, very common.
I find my fatigue is ten times worse in the summer months. This year has been exceptionally hot and my fatigue levels have been awful. I was very interested to read about the loud noises. I live next door to a school and the children in the pre school play just the other side of my garden fence. (That is another story that I wont go into but they werent there when we bought the house) Because I have to keep myself cool I have to have doors and windows open but there are certain children who squeal at the top of their voices and it goes right through me and causes me a lot of stress. Didn’t think for one minute that it could be a symptom of MS, I thought I was just getting grumpy in my old age. Trouble is, I am not in a position where I can move away so I have to tolerate it as best I can. I wouldn’t mind, but I don’t even get a break in the summer holidays as they have children there all summer long.
I’ve been on Modafinil for a while now Lilly and to be honest I don’t know how I would manage without it. At first I took it as and when I thought I needed it (I don’t like taking meds if I don’t have to) but it seems to be working better now that I’m taking it every day.
If I’m feeling really terrible than I cut down the dosage, as there’s nothing worse (from my point of view) than feeling poo and being wide awake to appreciate it.
I don’t find it gives me any more energy but I’m more awake so I can use what I have better. It’s also been fab for my cognitive issues.
The sensory overload is terrible isn’t it (especially high pitched squealing from kiddies)? I really don’t envy you at all hun and I feel like such a ‘humbug’ but I can’t cope with it these days either. At least the days are drawing in now and you won’t have to keep your windows open so much. Have you tried ear plugs?
I’m only newly diagnosed so I guess I don’t know how common certain things are or are not!! Fatigue is awful. I’m normally so busy and active that it has stopped me in my tracks. The loud noises thing is weird. It’s only part of the fatigue but my brain feels like its overloaded and can’t take any more. Even when my own baby squeels or screams its like torture: any loud noise in fact… After work all I want to do is sit in a quiet room and be left alone but that doesn’t happen with a toddler and a husband. I’m finding this so hard. Thanks for all the support though guys. Iv nobody I can talk to really