Forum

I feel so unwell

Hello all

For the whole time I’ve known that I have MS, on and off I have experienced a nasty feeling that I have struggled to explain adequately, but the best I can say is that it is similar to having a hangover and/or travel sickness all rolled into one. This is on top of having most of the symptoms associated with MS that we all know and love so well. I feel quite nauseous without ever being sick, fever-like symtopns without having an elevated temperature, dizziness and double vision, headache and utterly exhausted.

I’ve talked about it with so many doctor’s & MS specialists etc, most of the time they look at me with a bemused expression and I get nowhere. I have tried so many remedies all to no avail. I’ve had a bout of this now since before chistmas and I am struggling to cope because of it.

I just don’t know where to turn anymore, so I’m hoping some of you good folks can give me some good advise or if not some words of encouragement.

Thanks

Bill.

Hiya Bill

What u describe could be fatigue-I am not sure.

Re the nausea without being sick-I understand this feeling completely-I have been prescribed Domperidone 10mg PRN. It works. Or maybe try ginger-either a biscuit or sucking on a root-they did help for a while but then I needed to admit that medication was required.

Hope you find something that suits you-and soon.

Ellie x

PS one of the good side effects of feeling like this (for me) was losing 2 stone. Not so good if u cant afford to lose weight.

Hi Bill,

Has anyone mentioned that a lot of your problems could be down to vertigo.

Suffered with a lot of your problems on and of,till they started me on betahistine,take one 16mg three times a day.

For most of the time they work,sometimes 1 sneaks in under the radar,so take 1 extra.

Not sure if any of this helps you,but you never no.

Hope you get it sorted soon.

Take Care.

Chris.

Hi Bill, its not nice to feel so unwell all of the time is it?

sorry i dont have any words of wisdom, wish i had, but i know just how you are feeling,i am spms and feel unwell 99% of the time,i still have relapses too,i am having one now 5 weeks into it, and i know i wont start to feel a bit better until week 10,have you thought about trying LDN some people find it really good, i keep thinking of trying it,but i am quite anti drugs,so keep putting it off.

jaki xx

Hi Bill, I wonder if a medication review could help?

Maybe this would be via a chat with your MS nurse initially, eh?

Or your GP?

It was found that a BP tablet I`d been on for years, suddenly caused me to feel sick and dizzy in the mornings. GP said to take it at night instead and hey presto! It worked.

luv Pollx

I reiterate the very good advice above, domperidone worked for me, also omeprazole to stop stomach acid, if you suffer that too. Seems common amongst msers.

The feeling of never being right, haunts most of us. I found looking at what nature has given us (diverting attention from oneself) and enjoying getting out and above either with friends or alone, just sitting on a bench in the local park can help, plus the fresh air.

I know all ms problems cannot be solved this way however frame of mind and hobby or fresh outlook helps tremendously plus of course care from friends/partners and medical profession to give us the confidence we are being looked after.

I hope you wont always be feeling like this, I have and surprisingly I have had ups as well as downs. May your ms give you a break to allow you to live pain/sickness free.

Take care,

bren

x

Hi Bill. Ditto. Feel like I’ve had the worst type of flu for over 6 years.

Not much help, except to say I know exactly what you’re going through.

Pat x

That`s a lovely reply bren.

luv Pollx

I know exactly what you mean! I often say to people that despite having MS for donkeys, it was only in late 2010 that I started to feel ill. The reason ended up being gastro problems related to steroids + long-term use of anti-inflammatories (diclofenac), lactose intolerance and digestive spasms (caused by MS). I had to stop taking my diclofenac and I take various other meds for my digestion now: omeprazole & spasmonal forte (for stomach spasms that cause the nausea), loperamide (to prevent what was pretty constant diarrhoea) and then domperidone when the nausea breaks through.

Domperidone is amazing for nausea (although some cruel person decided to make them the foullest tasting pill imaginable - wtf? for someone with nausea?!?!), but it would be better to get the cause of your nausea worked out rather than rely on them. Please get yourself a referral to a gastro consultant. It could make all the difference!

Mine told me that gentle spasms in the digestive tract cause nausea and that severe spasms cause vomiting. Add to that that my neuro told me that the central nervous system inputs to the digestive system (especially the muscles in the digestive tract which cause nausea when they spasm), but it is indetectable by gastro tests so all the tests come back normal - and so we usually end up with an IBS dx, i.e. digestive problems of unknown cause. Things like baclofen can’t stop the spasms because they are for “voluntary muscles” (i.e. muscles that we can move by wanting to) and the digestive system has “involuntary muscles” (i.e. we can’t make our digestive tract spasm by thinking about it). They need things like spasmonal. Anyway, probably too much info!

The upshot is that you need to see a gastro. Even if he/she can’t diagnose you, they’ll be able to prescribe something to help. Constant nausea is the pits :frowning:

Karen x

Well now. The only time I’ve managed to completely rid myself of all those symptoms consistently was after sticking to an (almost unbearably) extreme diet for quite a while AND being on LDN AND making sure I got plenty of sleep AND plenty of exercise AND avoided stress.

The extreme diet was devised after having a food intolerance test (which some say is rubbish as it ‘only’ tests for IgG antibodies), so loads of foods including gluten were completely excluded, as well as following a low saturated fat diet.

After c. 2 years of following the extreme diet, I gradually reintroduced the suspect foods and don’t feel as bad as I did, but still tend to feel a bit yucky. The utter exhaustion (that huge, black, all-engulfing tidal wave) hasn’t hit so often since being on LDN.

Humm, other than that little lot, have you had your B12 levels checked? Munching on oysters (or mussels) is good for B12!

Hope all is well in your world and that you stop feeling horrid soon.

Lolli xx

Really? Is that a new type of MS? (lol @ my reading skills )