New kid on the block seeking advice

I was diagnosed with MS in March 2017 (relaxing/remitting). What I am finding difficulty with is knowing if the pain and sensations I experience most days are all MS related. The fatigue and mind fog are areas that I constantly struggle with. Bowels that don’t work and a bladder that doesn’t stop working! Poor sleep - never feeling refreshed. Mood and self confidence lowering with each passing day. Any thoughts and/or advice would be greatly appreciated.

hi pobertali

i look on ms as a faulty computer chip.

bowels and bladder issues are horrible, oh the loss of dignity!

yet we all know someone whose life would be over if they had ms.

we are not they, life must continue.

get to the bowel and bladder clinic, they can really help.

movicol for bowels and betmiga for bladder come with my best recommendation.

as for pain you will be able to know what is electrical (MS) and what is mechanical (arthritis etc).

fatigue and brain fog are the pits.

learn to pace yourself re fatigue and accept that sometimes you have to give in to it.

as for brain fog, let the people close to you to be aware of it and to help you out.

carole x

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No real advice Pobertali, but also cannot sleep hence lurking on here! I was diagnosed just 2 weeks ago.

Carole’s analogy of a faulty computer chip is great. - I wish my son’s IT qualifications and programming experience would make it possible for him to reprogramme me!!

I think that some sensations (in my experience) are clearly ‘electrical’ and some less clear - I am getting a lot of twitches and spasms now, and am assuming that muscular (mechanical!) pain following this is probably a by product of the spsms but as I have said im my post in another thread just now, I’m still finding my way!

Best not to ignore anything too unusual in case it’s not MS - do you have an MS nurse??

you are right minnie,

spasms are involuntary contractions of muscles, like a good work out in a gym and that is why you ache afterwards.

no bloody wonder we have fatigue, constantly working out and concentrating on every step so that we don’t fall.

we are really amazing!! and should sing our own praises!!!

AMEN to that Carole.

I asked my neuro why is when i am in the house i can walk more but as soon as i go out of the house i cant walk hardly at all without feeling as though i am going to hit the deck or feel so fatigued it makes me feel sick.

He said its easy really. your brain knows how to keep you safe in your usual surroundings but when you go out of your comfort zone your bashed and battered brain has to work harder to keep you safe which increases your fatigue and makes you more tired and out of balance and in danger of falling, so you find it easier to be taken in your wheelchair. As long as you walk where you are safe its a help its when you stop walking where you feel safe your in trouble. I totally got that.

I agree we need to understand what is our MS and what is something else. I know most of my rubbish is my MS. Pace is also the key and learning when its better to do things and when we need to rest.

I have been awake since about 3am as i felt really sick but it is mainly because i have done too much in the last two days, i went to see 2 houses, then yesterday had the estate agent put my house on the market and all these things make me feel MS ill. MY head is buzzing and my bladder is hurting, my legs in spasms because i dared to walk around 2 park homes MS is totally unforgiving. xx

Hi Pobertali The pain and sensations may be MS or simply normal wear and tear. Fatigue and mind fog, bowel and bladder issues are real MS symptoms. Mood, depression and emotional symptoms could be the usual response to stress, anxiety or even certain medications. Carole, Minnie Mouse and Crazy Chick have all given valid explanations for various phenomena. If you can focus on one or two aspects that you want to address for now, that will be easier than trying to solve all the issues at once. Best wishes, Anthony

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Yes, Caroles analogy was a good one. And Crazy Chicks advice about inside and outside walking is helpful to know.

It sounds like most if not all of your symptoms are caused by your MS (faulty wiring is another analogy).

But don’t forget, not everything is MS. If you get new symptoms, run them past your MS nurse, just in case it’s something to either get fixed with eg, antibiotics, or something to get some more serious help with.


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