I’m concerned I went to bed yesterday at2pm and got up 10am today. Is this normal for RRMS in haven’t started treatment. Please help i don’t understand what’s happening.
Hi there,
I don’t know if it’s normal as I’m not a clinician, and I think everyone experiences MS differently. If you are worried you could try calling your MS nurse for some advice.
I hope that helps
I have tried to call MS nurse 5 times and they never call back. I have given up.
It depends on what your normal sleep pattern is @louie712002 . If you typically sleep a lot then it is probably normal for you. If you don’t sleep a lot then it could be abnormal. And it could also be a one-off due to feeling more tired than you normally do. Most of us know that fatigue is a common symptom of ms. Just see if it happens again, or more frequently. Hopefully it’ll be just a one-off for you. As @lnp8acr said, try calling your ms nurse again. We know that the cogs of the NHS machine turn slowly.. very slowly at times and there could be numerous reasons why they haven’t returned your call as yet. Wishing you all the best in getting the the answer from your ms team as quickly as possible.
I’ve had enough of calling MS nurse they never call back. I had video consultation with them 14th November it was cancelled and now have to wait til 12th December. I have done everything they’ve asked of me and still don’t know when I start treatment. It’s really getting me down.
It is disappointing when appointments are cancelled @louie712002 , frustrating too, especially when we’re not told of the reason or can’t see any reason why it has happened. Hang in there. You’ve got that video consultation appointment on the 12th December. Be as prepared as you can be, by making a note of everything you want to ask about and find out about, too. Wishing you all the very best that they do keep your approaching appointment and you do get the answers, to what you desperately seek.
There can be all sorts of things going on in the early days of an MS diagnosis. The disease process itself can be pretty active (as it was in my own case) and the body knows when there’s a lot of inflammation about and all is not well and adjusts its energy budget accordingly. You could be having a specific relapse that ha a direct impact on your sleeping/energy systems. Also, the news itself is shocking and a person’s whole system can be knocked into a low-energy state of shock by a life-changing diagnosis and the dawning realisation that life might not work out how we planned it. So many reasons to be feeling unwell and under the weather.
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In my experience yes it is pretty normal. Even in the early days an often slept long . My thinking is that the brain is a very energy hungry part of us and when damaged by lesions, strokes or anything requires a lot of rest and energy. Eat a good brain healthy diet and rest/ sleep when needed !
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