Last reply 2 months ago
Feeling like a tuning fork

First post, exciting stuff.

I’m up late as usual because I struggle to sleep nowadays. First onset 2 months before my diagnosis in May and had a sudo relapse just before the 2 month mark in remission. I’m a 27 yr old student MHN going into my final year of uni and still coming to terms with the reality of this disease.

So for starters, what helps you sleep? Amitriptyline doesnt seem to make me drowsy enough, nor work as well as the pregabilin for neuropathic pain. I was on zopicolone for a while after my diagnosis but I want to stay away from opioids.
Aaaaand
What do you find best for pain?
What helps with chronic fatigue? Besides exercise and dietary interventions.

Definitely rambled on enough,
Thanks in advance!

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stumbler
2 months ago

Hi @looweeze , well. I’m glad we’ve excited you. 😉

You’ve asked a few interesting questions. And, as they’re about MS, there are no definitive answers. We’re all different and what works for one, won’t work for another. It’s the nature of the beast.

So, sleep? No easy answer, but here’s an article that may offer some possibilities :-

https://www.mstrust.org.uk/life-ms/wellbeing/sleep

And pain? We need to understand the cause of pain, then we can try and address it with either therapy or medication. Medication is very much a case of finding what works for you, and at what dosage. Here’s some more reading on the subject :-

https://www.mstrust.org.uk/a-z/pain

And fatigue, the biggest bugbear of MS. Once again, no easy answers. We have to understand the limitations of our new self and try and work within them. Exercise and diet have a part to play in leading a healthy lifestyle. More reading :-

https://www.mstrust.org.uk/a-z/fatigue

And, you think you rambled on…………..


vixen
2 months ago

Hello @looweeze and welcome. What a giant shock you’ve had – onset to diagnosis in 2 months is pretty speedy! The mental and emotional turmoil over diagnosis and facing what this brings are enormous, even if you are dealing with it well. Lots of people on Shift, including myself would say it probably takes a year to get used to this new way of being. When I can’t sleep personally, I make sure I’ve got a really good bank of recorded TV to watch; so I kind of give in to the misery of not sleeping and put myself in the position of at least having something to enjoy. Inevitably this makes me tired and does the trick. Good luck with your search; how much amitriptyline do you take?


grandma
2 months ago

Fatigue us do very different for everyone, u have to find out what works for u. My routine ( but I am 62!) up at 6 with digs, make allpts in am. Sleep after lunch fir 2-3 hours, get up again at 4.30 , then fit for pottering about and usually manage dinner, by 8.30 sacked out on sofa box watching. I understand u are at uni, there should be no problem getting lectures recorded,getting extra time for papers etc. Sleeping, I use talking books or radio, invariably I fall asleep even if I’m not really tired, worth trying?😍


looweeze
2 months ago

Thank you all, really helpful advice. It’s not even been 6 months so reassuring it can take about a year to really get to know my new MS body 😅

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