Hi everyone, hope you are all as well as you can be. I have a new situation happening which is very debilitating. I usually get up around 9.00 and by 2.00 am totally worn out, even though I don’t actually do anything because I can’t! Getting out of bed and making it to the front room to sit in front of the TV is all I can manage. This is not an ideal situation. By 2.00 me mobility becomes seriously bad. I take 80mgs of Baclofen a day, this calms the spasms and rigidity. I am ready to go back to bed by 6.00 but try to hold off until 8.30/9.00. My OH is getting hacked off with this. I feel I could quite easily stay in bed and never get up again as being in bed is the only way of coping! Does this happen to anyone else? Thoughts, experience and comments would be greatly appreciated? I am getting to the stage where I can’t cope with this and feel very much like giving in to it and retiring to bed for good. Linda x
Hello Linda, the med’s could be what you are taking could make you tired. Most people with MS suffer with fatigue, speaking for myself like you getting up in the morning ang getting dressed makes me tired. So I make a drink and sit down for half a hour which gives me a boost to carry on. Come two o’clock I have to have a rest which lasts about one to two hours. Listen to your body and rest when you need to but don’t let it rule you as you have MS but it hasn’t got you.
if yours persists I suggest you pay a visit to your gp and ask for help from him/ her. Sending (((((HUGS)))))
Janet
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Thanks Janet, I have to sit down frequently after doing the simplest things. Forgot to say I’m SPMS so am well past RRMS. I’ve had 15 fair years so it was going to get me sooner or later, just didn’t expect it to be so active and aggresive. The meds I’m taking may have something to do with it but unfortunately they are a neccessity (because they do what their supposed to). I’m glad in a strange way that I’m not alone, so we’ll battle on together! As you know nothing in our MS world happens quickly so monitoring and trial and error will have to kick in. Thanks for the hugs. Linda x
The problem with labelling it ‘fatigue’ is that people who don’t have m.s. think it’s the same ‘fatigue’ as they experience and think that because they feel better after a short rest we should do the same.
Hi Linda,
Like you I too have SPMS and have for 40 years and is now really letting me know it, but I’ll be dammed if I’l let it beat me and I’m sure you will fight it to. Good luck and best wishes
Janet
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