Forum

Struggling

I’ve been trying to put on a brave face but I’m struggling and the past few days I’ve felt dreadful.

My Vertigo is really bothering me and I’ve been more fatigued than usual and not had much energy, although I’m still trying to carry on with some things the best I can.

I’ve got a lot of pain all over my body especially in my head, neck and shoulders and it’s quite sickly. I know some of it will be my Fibro and not just my MS.

My balance and coordination also seem to be more problematic at the moment too as is my memory and thinking. I’m unsure about what’s happening and what to do!!!

I have an appointment with my MS Nurse but it’s not for another week.

Sorry to go on but I’m really fed up.

Twinkle Toes x

I know it’s hard waiting but seeing your MS nurse is good, so hopefully worth the wait. I’m trying to write a blog at the moment and it’s hard at times, on the one hand I could really do with venting BUT don’t want to be seen as moaner so it’s a difficult balancing act. And some symptoms are just really difficult to explain. I’ve got nystagmus in both eyes and ataxia, so I’m totally with you on the wobbly stuff, seriously, sleep is the easiest option at times!

Keep your chin up. Hopefully you’ll feel your nurse helps but in the meantime, moan away

Sonia x

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I’m so sorry that you are having s hard time Twinkle. The poor balance and dizziness have always effected me , if I’m pooly or very stressed they become unbearable.when I was 25 I was diagnosed with Labrithitus, it was my first episode of Vertigo , I felt sick and had double vision and slurred speech. I seemed to regularly get it after that it’s awful. I hope that you get to see your ms nurse soon . Take care Love Michelle and Frazer xx

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Hi TT

Sorry things are difficult at the moment for you, hopefully the MS nurse will help, hang in there, easier said than done I know, as balance and dizziness is so debilitating.

Rest as much as you can (((hugs)))

Pam x

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hello tt and all

pains and dizzyness spinning gyroscoping are the worst for me when im hot

i try to keep cold and not too many layers of clothes , but need lots of layers on feet as always cold there

as someone else said i sleep it off most of the time now as this is how i can manage the gyroscoping i have most of the time

your m/s nurse might have a cancelation so ring and see if you can see her b4 your appointment as i have done this a couple of times it also helps them out as they will have no waste of a slot and offer yours to someone else

keep calm and cool

cy x

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Hi there TT,

i seem to be having an MS dip at the moment too. I get nystagmus in both eyes and my arms, neck and shoulders are constantly hurting. I’m struggling with fizziness down my right side at the moment. I have increased my amytriptylene to 40mg and that seems to be helping.

This forum is so good to let off steam and is a good source of comfort to realise that we’re really not going mad

take care and keep smiling. Jane x x

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I hope you are feeling a bit better Twinkle toes , I was wondering if you’d got some help, I’d missed you being on here. Michelle and Frazer xx

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Hi Michelle & Frazer,

Thank-you for your message that was a nice thing to say and I’m sorry I haven’t replied till now.

I’m feeling a bit better than I was as my symptoms have eased slightly. I have been resting plenty, sleeping things off and keeping topped up with my pain relief.

I’ve got an appointment with my MS Nurse on Friday and an appointment with the Neurophyscologist on Wednesday so I’ll see what comes of them.

Twinkle Toes x

Hi Pam,

Thank-you for your message and your concern.

My balance and dizziness have been debilitating but I’m feeling better than I was as I’ve been resting and sleeping plenty, and keeping on top of my pain relief.

I have an appointment with my MS Nurse on Friday so hopefully something will come of that.

I hope you’re ok?

Twinkle Toes x

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Hi Sonia,

Thank-you for your message.

I’m feeling better than I was as I’ve been resting and sleeping plenty and been keeping on top of my pain relief. I have an appointment with my MS Nurse on Friday so hopefully something will come of that.

Total credit to you about writing a blog especially seen as you’ve got Nystagmus in both eyes I had it very early on (before my diagnosis) but only in one and that was bad enough.

I can imagine it being very difficult to balance out (no pun intended) your thoughts and feelings but just be honest about things and how you’re feeling I’m sure everybody will support you and understand.

Ah, so I’m not on my own with ‘those’ symptoms that you just can’t explain it’s a horrible debilitating disease that we are all fighting and suffering from :frowning:

Take Care and Good-Luck with your blog.

Twinkle Toes x

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Hi Michelle & Frazer,

I’m sorry to hear that you suffer with the poor balance and dizziness too.

When I’m feeling stressed and suffering with excess Anxiety my Vertigo goes into overdrive and it comes to a head, which is what think has happened and tbh it’s been the worse it ever has but I’m hoping it’s easing off again (till next time).

Twinkle Toes x

Hi Cy,

Thank-you for your message, pleased to meet you.

I know what you mean about it being worse when you’re feeling hot as a lot of my symptoms are exuberated when I am and like most others I try to keep myself cool the best I can.

I’m feeling better than I was as I’ve been resting and sleeping plenty and keeping on top of my pain relief and I’ve got an appointment with my MS Nurse on Friday.

Take Care.

Twinkle Toes x

Hi Jane,

Thank-you for your message, pleased to meet you.

Aww, sorry to hear that you’ve been having a dip with things too and yes, you’re right this Forum is a good place to let off steam but also get plenty of support and comfort from people who can relate to what’s happening to each of us.

I’m feeling a bit better than I was as I’ve been resting and sleeping plenty and keeping on top of my pain relief. I’ve got an appointment with my MS Nurse on Friday, so hopefully something will come of that.

Take Care.

Twinkle Toes x

Hiya TT,

Hope all goes well with both of your appointments. Be sure to let us know how they go.

All the best. Jane xx

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Tee hee - apparently one jiggles up and down and the other goes side to side. Horrible when you’re taking your make-up off, I have my own little freak-show in the mirror!

Sonia x

Aww, Sonia don’t look at it (omg another pun not intended) as a ‘freak show’ how about more like your own party piece and think of it that way :slight_smile:

Twinkle Toes x

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Hi Jane,

Thank-you, and I will do :slight_smile:

Twinkle Toes x

Big hugs x