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Relapse Recovery

I have been recovering from a relapse for the last few weeks.

The problem is that the only signs of recovery I see are in the evenings. I am fine when I go to bed, but as soon as I wake up in the morning it feels like I am back to square one again, and I have a bad day until the evening comes around again.

Does anyone else notice significant changes at different times of day?

Anyone?

Hi Bostick, I’ve notice that in the morning I am at my best. By the end of the day I have badly aching legs and back when I stand up. Sometimes I wake up in the middle of the night and feel better after sleeping a few hours, so I use this time to wash up or tidy my flat.

What are your relapse symptoms?

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Hi Bostik, I have a similar problem. I haven’t had a relapse for 2 years but I usually am not good in the morning. Getting up is exhausting! (I was referred to a group about managing energy run by a physio and an OT. The OT said in an analysis of an energy diary that getting up was a huge use of energy.)

I often get up because nothing will get done if I stay in bed but it’s often the evening before “I’m firing on all cylinders”. I then start to feel “normally” tired and go to bed.

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Could it have anything to do with medication and the time you take it? Do you work? therefore have to use your energy to keep going all day only relaxing on an evening making you feel better.

Jan x

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I am at my worst in the morning and gradually get better during the day. I try and go on a cross-trainer for 20 minutes every day and I am much more likely to be able to keep going for the whole 20 minutes if I do it after 5pm. I can do less than 10 minutes if I try in the morning.

I see a neuro physio who has had lots of MS patients over the years. She told me that she had seen other PWMS who improve during the day and are at their best in the evening but she had seen more who were at their best in the morning.

What a strange and variable disease it is!

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Thank you all.

I am currently taking Fampyra and Tizanidine at 6:00a.m. and 6:00p.m.

I shall consider changing the Tizanidine to 12:00 to space my meds out.

Useful to know about the energy used when getting up in the morning, but can anyone suggest a way to lessen its impact?

Thank you.