So much for that...

Positivity gone, and most feelings of hope too. Had fab trouble free day yesterday, with just a minor blip when someone replaced the blood in my foot with ice, which then spread up my leg. But then that went away once I was in work, nice & warm. I went to bed feeling on top of the world.

Today I woke up utterly exhausted and vibrating (don’t know how to discribe it!). For a little while even my eyes were vibrating, but thankfully that stopped. I’ve been tired and weak all day. Hanging the washing up made my arms ache, as for pulling the pulley back up, that nigh on did me in. The washing nearly spent the day dangling almost on top of our fire.

The tiredness was also in my head. I haven’t been able to hold a thought all day, and I’ve been forgetting things. I go to do something only to discover that I’ve already done it. I have been like this several times in the past, but I’ve always been told that it’s post-viral fatigue syndrome. I now wondering if that was strictly true, because this certainly isn’t.

I’m now terrified to go to sleep as I don’t know what is going to happen to me tomorrow - I have it in my head that I’m going to wake up blind or deaf (tinitis is extra loud tonight!). Think I might immerse myself in a Harry Potter film with my headphones on in bed & let my hubby detangle me from them once I’m asleep.

Do neurological symptoms normally change this rapidly? and what state am I going to be in by the end of Jan when I get my MRI (it’s ok, I know you can’t answer that one).

Right, Harry Potter…

In my experience - yes.

Symptoms can change each day. I tend to have a week or longer whereby the TN affects me severely. Then it subsides only for my balance to be off for weeks then it will change again to spasms in muscles and severe pain. Sometimes they overlap. Can have altogether other times one issue is driving me nuts more than the other. Last night it was excruciating neck/collar bone/arm pain so bad it hurt breathing. Sharp pains.

My twitching is the only constant in this as it NEVER goes away :frowning:

On a positive note - I experience ‘better’ days whereby I think oh I feel normal. But the next day back to square one. I don’t know if others experience fluctuations like this but certainly I do.

Embrace the good days when you can!

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hi mali

i was dx in 2008 and one thing i have learned is that it is important to have something to look forward to.

for me that is concert tickets.

so far in 2015 i have seen The Sounds of the Sixties with a couple of friends, Faithless with my husband, the Coral, Starsailor and the Waterboys.

i also like having theatre tickets and this year i have seen the Skryker and the Masque of Anarchy both starring maxine peake.

when i’m having a bad day or a bad week it helps to know that one of my gigs is coming up.

just having arrangements to meet a friend for coffee can give me a lift.

hope you can find your way through all this cr*p and come out smiling.

carole xx

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Hi Everyone,

I am in the middle of a spinal relapse and my sleeping has been very bad.

My Doctor prescribed me Circadin 2mg to help, I have been taking these for almost two months and have never experienced the side effect of a tablet so badly since being diagnosed!

I have had uncontrollable shaking where I could not even put my mascara on in the morning, there was more on my face than on my lashes!! I thought it was the relapse symptoms… I had an anxiety attack also a few days ago; I have a pair of Doctor Martins in my throat and the most horrible butterflies in my stomach.

I was feeling so bad last night that I actually read the side effects of Circadin and it clearly says that people with Auto Immune Diseases should be wary of taking this drug…

I did not take it last night to see if I felt any different today because I was so desperate to reduce the feelings I have endured for the past two months almost…

Wow and behold today I am not shaking… now I don’t know if it was cause to the drug or if my steroids have kicked in and I am feeling so much better this morning.

Is there anyone out there who has been prescribed this drug and felt the same as me?

Thanks Paula

Feeling bit better today. Weak, shaky and tired, but quite clear thinking! Think I turn into a complete drama queen when scared!

Paula - I haven’t been diagnosed, so can’t help you with that.

Trueman - it sounds hard to cope with and stay sane. I am going to completely embrace every good day in the future, thank you. I find these fluctuations utterly bizarre, and don’t get how nerve damage can effect energy production in your muscles. I’m a biologist by training, and it’s one of the subjects I teach, so once I feel happier with what is happening to me, I may pluck up the courage to start googling again, and investigate the link between nerve damage and mitochondria!

Carole - I had forgotten that I have tickets to look forward to too. I must admit they are a little different to yours - panto with the family, and Cinderalla the ballet with my wee girl. Going to focus on them & the whole family Christmas thing (for the first time in years, we have no visitors coming, yeah!).

Think I might start up a whole ‘Good Days’ bucket list (& obviously keep my fingers crossed that I’m just a hypochondriac, and it’s just all in my head!).


So I’ve pretty much got nerve damage I know that. The muscular pain spasms I can only put down to the muscles twitching so much they go into spasms as they are knackered!

Don’t get too down by hypochondria thinking. You know your body better than anyone else. Anxiety plays a huge part but you know when the symptoms you experience anxiety or not as real and bothersome. The wait to find out why you are feeling this way is very difficult. So don’t be hard on yourself. Try to do what you can to get past the worry and symptoms and just accept a bad day as much as embrace the good day.

We we are all with you. Some days it can completely take over but there is always a better day ahead somewhere!

Today my upper back is in spasm and I can’t use my hands very well. Also the stupid swallowing problem. But hey ho. I’m going to go clean bathroom probably dropping about 60 things in the process, Hoover Floors then chill out with the fire going. Getting cold out there due some snow…