I got up again at about 11.30am BUT I could have stayed in bed all day. Fatigue has really hit hard today. It's amazing how it hits and just how incapable of doing anything, I feel. It has stayed with me all day.
I say I got up but all I did was transfer myself from my bedroom to my sofa, where I promptly fell asleep again this afternoon.
My body is experiencing withdrawal symptoms from the steroids too. I have a really bad achy pain along the top of my back and shoulders. It feels as though I have done ten rounds in a boxing ring. Not at all pleasant.
The numbness feels quite prominent again today, which is disappointing. My right hand is struggling and the numbness up in my head is frustrating. Is this just because I feel so tired?
I had a call from work today and I have agreed to return on Monday. Am I doing the right thing? At this moment I am not sure, but I do want to go back and to be fair they have been very patient with me, so I don't want to take advantage of that. I guess I will just see how I feel over the weekend and if I don't think I can manage on Monday I will have to say so!
I have no plans over the weekend, which is how I wanted it. I just need to take it easy and keep resting. It's hard because I had the last infusion on Wednesday so in my mind I should be feeling better by now. And although I still need to rest, my head is starting to question whether I am just being lazy. Does any of this make sense??
XxXxX
you hoped the steroids would be the magic cure you need amelia,and you feel down.fatigue is awful,dont be brave and try and fight it,you will lose.coming off steroids is not good,i had the same symptoms,bloody ached all over.please listen to your body amelia,it needs to rest.so if you dont feel well enough to go to work monday,dont.wish i had a magic wand for you,or me.i dont.you are in my thoughts,take care,love mort xxx ask to see the MS fatigue physio,i saw mine yesterday.i will post soon and explain more.x
ReplyDeleteHi Amelia,
ReplyDeleteShit that you are in so much pain and discomfort really hope it eases.
Take care.
Herrad
IN jan I WAS TOLD I might have ms I have pain & numdness in my left side so they did an mri of my neck & lower back and found no bad disks they did get a few pics of my brain by accident. They said there were "spots" and now need to do an mri with contrast of my brain. Im so scaried and tired. I just started to feel better from the kidney disiese. I just started back to work after 2 years of that. The past 2 days have been the worst I have had my left hand isn't working very well I cant hold a pen well enough to write & to hold a piece of paper is agony. I get the mri tomarrow. Sorry about the spelling my brain doesn't seem to work very well any more ether.
ReplyDeleteAnonymous - Hang in there. Waiting for results is hell. BUT when I was told I was actually a little relieved. The fact that they had found something and it wasn't all in my head was good because that meant they could help me.
ReplyDeletePlease feel free to email me if you want to chat, you don't have to go through this alone.
Hugs
Amelia XxXxX
well I got the mri today It hasn't been looked at offically but my dr says I have ms 2. knowing Ill bee lucky to have my kidneys last 10 years isn't enough Now I know ill be in constent pain 4 the 10 years I HAVE LEFT! If I didn't have my boys I would have given up 2 years ago. Knowing the pain is just going to got worse...... Forget the fact that I'm the only 1 working right now or that I can't afford 2 take a day off. Hay anybody know of jobs I can do from the couch? Thank you Amelia I'm just venting Looks like I need to kick my huby back 2 work but got tow tell you it felt good doing well at a job being able to work after the 2 years fighting. Now I'm just tired of fighting I passed 137 kidney stones my first year becouse of a med they put me on 4 migrains now I'm guessing from the ms. well Im sure I will feel better later I think Im just over tired and unable to sleep. thank You all for letting me vent I'm really not looking for anything just needed a place to scream without anyone knowing my name. I know by next week they will put me on meds and at least I wont hurt more soon.
ReplyDeleteME
Hello, I'm a 20 year old female. And after about 2 weeks of having double vision I found out I might have MS. I've had blood work done, CAT scan, and MRI to show that I have white stuff and lesions on my brain. Frankly, I'm scared outa my mind. I haven't been able to pull myself together emotionally because I don't know how it could get better or what I should expect. What should I expect? I believe it is in it's early stages so so far I've only been tired and my vision is messed up. How much worse is this going to get?
ReplyDelete-Tahani
Hey there,
ReplyDeleteI just had to reply to you and say, please feel free to email me, if you want to talk to me about anything.
It is hard to say what path MS will take any of us on. But the one thing I really want to say, is that it is OK to be scared. It is scary and it is a hard thing to get your head around. But give yourself time, don't expect to be able to understand it all, in one go. It doesn't work like that. I have been diagnosed since 2002 & I still go through times where I don't understand what is happening :(
The good thing is, that you have found out now that there is a name to the issues you have been experiencing. Some people go for years, not having a diagnosis and thinking they are going mad, with these strange things going on.
As for How much worse will it get - no-one can answer that for you. You may have many years where the symptoms don't appear at all, and I am praying that this is what will happen for you. The one thing I always remember a Doctor telling me, was that the only predictable thing about MS is it's unpredictability. And he was SO right.
Good Luck & please feel free to get in touch, if you want to!
Hugs
Amelia XxXxX
Thank you Amelia for your kind and positive words. I've been looking for a support group and a friend that understands and is experiencing what I am going through and I'm glad I found you :) I will definitely keep in touch and I'm glad I found your page because ever since Thursday last week when the doctor told me my MRI results I completely lost hope but talking to someone is slowly giving me my hope back.
ReplyDelete-Tahani
It all makes sense. When I took steroids (pre-Tysabri), they made me feel the same as you describe...especially after a multiple day course. I'm now at the point where I honestly feel (had it since pre 98), that I certainly don't want anything bad to happen to me but I'm kind of tired of fighting and if it did that would be ok. :-)
ReplyDelete