As the title suggests I (M, 25) was diagnosed with RRMS last month after a pretty shitty year in Limbo. Physically I’m doing great, my only “attacks” so far have been tingling, tremors and some bouts of pretty agonizing back and leg pain. At the moment they’re all on the background and I’m just a bit twitchy at night. Girlfriend who lives with me/ family at home couldn’t be more supportive.
The thing that’s really draining me is that I’m constantly on edge. I feel a toe falling asleep, a dizzy moment or a twitchy muscle in bed and I don’t know wether it’s normal or the disease. This leads me to being overly focused on my body and it’s really hurting my ability to sleep and enjoy stuff. Did you guys feel this way just after the diagnosis ?
I realize I’m going to have to accept that weird stuff happening will be a part of life from now, just looking for some feedback from people who might recognize the situation.
It’s normal to have a range of emotions when you’re diagnosed so don’t beat yourself up for feeling weird or not enjoying things. I was struggling with no sleep, lots of nerve pain and too many trips to the loo. My MS nurse prescribed Amatripalin and they’ve really done wonders for me. My nerve pain has drastically reduced and I now sleep through the night. It’s helped me feel stronger to face the days and the weird things that happen to my body daily. Maybe discuss with your nurse it you have one or GP. They might help.
It’s a tough thing, getting an MS diagnosis. Especially when you are still young. And your emotions are probably all over the place, plus of course it will frighten you silly over a weird twitch or a headache.
Joey was quite right that it’s usual to feel like you do, and a drug like Amitriptyline could help, with odd feelings in your feet and legs plus help with sleep.
Another way to handle it is to start a diary. I keep a diary simply for health stuff. I started in an old notebook about 7 years ago, I just did a daily run through of all my various symptoms. Then I found a diary ‘app’, transferred all my notes over to the app and have kept it ever since. The good thing about writing down any symptoms is that once you’ve written down what’s happening, you can forget about it. My diary has a system of ‘tagging’ post’s, so I can have a ‘tag’ that is about my bladder perhaps, another one about spasms, and/or just posts with no tag, just general how I’m feeling type of thing. I don’t write in it everyday, but it’s helpful to be able to look back on. And like I said, if you’ve written something down, you know it’s tucked away and you can then go to sleep.