Dear All,
Fatigue – again. My ongoing nemesis and key topic.
I was wondering if I could ask you how you are feeling right now, and how you were the last 14 days?
I am having the worst spell of fatigue with strong MS symptoms (shaky legs and hands, legs giving in, headache, feeling cold and hot, ear ache, vibrating or hot body parts, insomnia and, mouth ulcers and, of course, a killer fatigue) since the beginning of March. I seem to have the vague memory that it was the same last year around this time, and end of October.
So. Spring and autumn? Is the rumour of seasonal impact true?
If so, how long does it normally take for you, and is there anything you can do to make it better?
And about myself: Diagnosed 1.5 years ago, RRMS, on Tecfidera.
Thanks all!
Karin
Hi Aromastoff I do keep a log of symptoms. I have done over the past year namely because I have been so rough with no idea why! Below is an estimate and shows how no day is the same. What is clear, I am yet to have that normal feeling, the last time I was normal was mid June until end of August. The fatigue kicked in again September but i was very able to get on okay in the day. I would work, come home and hit the sack no amount of sleep resolved the issue. Having viruses like colds makes everything worse. October I was fine too. Nov 16th - present ongoing. I plan to get a diary as I want to look at patterns and whether there is anything I can do to minimise any of my symptoms. For example I can no longer heat bare with any dry air, like car fans, blow out heaters, central heating or a hot stuffy office, the fresh air works wonders for me. Would you say the medication has made a difference? Fatigue: over the past 14 days it has been variable – 1st, 2nd and 3rd I did not record anything to do with being tired so I assume I was variable between 20-40/100 4th 70/100 5th 100/100 6th March awful constant 100/100 7th a slight bit better 80/100 8th 80/100 9th and 10th the same 80/100 11th 90/100 12th 100/100 (Dr informed me of MRI results the night before, disturbed my sleep subconsciously processing news of 11th so the 12th was a right off as not sleeping well exacerbates fatigue in my experience hence my ridged bedtime regime. 13th 80/100 14th 60/100 15th 80/100 News re MS after seeing Nero consultant. Later that evening say 6pm I was okay say 40/100. 16th 20/100 Today Woke up today feeling good given what life is like, No leg weakness until I decided to wash my hair over the bath… hmmm will need to rethink that! What will tomorrow bring!!!
Woooooow! Thank you so much for that detail!!! That’s really helpful! And helps to compare my notes to yours (I’m taking down the levels, too).
1st, 2nd and 3rd: 60/100
4th: 70/100
5th: 60/100
6th: 70/100
7th 50/100
8th 80/100
9th and 10th 90/100
11th- today 100/100
So you and I seem to have a different trend. Interesting. OK, so that helps, this should then lead to the assumption that maybe I have an infection or cold or something, or a relapse. I never know what to do here, and my MS nurse is rubbish. I’m guessing there’s nothing one can do? If it’s a relapse? Other than rest? What’s your advice?
What was the result from your neuro? I hope you’re alright.
Thanks!
Said on here so many times - I hate the cold and the dark days of winter - makes me feel crap