I went on a course through work and MS nurse was there to give a talk on it.
I found it strange as went on about dissabilities associated with MS but not once did she mention fatigue/brain fog.
I actually find the fatigue can be really disabling -feet feel like their nailed to floor,a spoon feels like a lead weight so don’t eat as too much effort etc.I am lucky in that at moment my fatigue comes in spurts so can manage usually just suprised me from a specialist nurse and also made me think I was maybe I was just being a moaning git!!lol
When I mention this to her she did add it but tbh it felt like more of an afterthought.
I absolutely agree with you Gladys, the fatigue and confusion is one of the worse things…for me anyway. Surprises me too ms nurse didn’t talk more about this issue. It has a big impact in just about everything you do in everyday life.
Well see that was my thinking tho understand there are many symptoms to cover
Just why didn’t an MS nurse who was giving a talk about MS to people who worked in care sector (OTA/carers) so dealt with folk with MS fail to mention something that as you say they have a booklet dedicated to it.
Just made me wonder if they truly understand what it can do to you.
Some there were suprised when I actually said what it was like and its not just a case of telling person to have a wee rest and they will be fine.
I do get very annoyed when people use the wrong word for things
Saying they have flu when its just a cold (I’ve never had flu but my dad has - he was in bed for days unable to move)
Sayingthey have a migraine when its just a headache (I do get migraines - a headache is wee buns compared to a migraine)
And saying they have fatigue when they are just tired or lazy. Fatigue is not the same as tired. Surely professionally trained people should know this.
Ok rant over. Have a good non-fatiguing weekend all
l think the only people who understand MS - are US. And even then we are all different. But you are right - fatigue and brain fog are very difficult to explain to folk. l have had SPMS for 31yrs - and 6yrs ago l found out about LDN - and yes it has made a huge difference to ME - doesn’t always have the same effect on all that try it. For me, it stopped the brain fog - l have far less fatigue and my trigeminal neuralgia has not returned. l do take a high dose vitd3 vitb12 magnesium to keep me as well as possible.
We would get more compassion if we had both legs in plaster casts!!
Good to hear LDN can have a positive impact on fatigue and brain fog. Still hoping for an NHS prescription… It does affect everyone differently but I do get annoyed when colleagues moan they’re tired after a late night - keep biting my tongue.
Good to hear LDN can have a positive impact on fatigue and brain fog. Still hoping for an NHS prescription… It does affect everyone differently but I do get annoyed when colleagues moan they’re tired after a late night - keep biting my tongue.
Yes, definitely! Touched on this in an earlier thread, where you also posted.
“Fatigue” doesn’t even appear in my notes as a problem, yet is is probably THE most frustrating and disabling symptom - out of proportion to any detectable physical impairment.
Even when I raise it with the professionals, I always feel they’re trying to persuade me it’s a side-effect of my medication, rather than a direct consequence of MS.
Baclofen, in particular, always gets the finger of suspicion pointed at it. Now I know some people DO get sleepiness as a side-effect. However, I can’t say I’ve ever particularly noticed this. My GP said I’ve been complaining to her about fatigue since before I ever started Baclofen, which seems pretty conclusive, yet still it doesn’t feature in my hospital notes! I’m also told that IF I was going to have that reaction to Baclofen, it’s quite fast-acting, so I’d probably notice quite soon after taking it. But my fatigue doesn’t follow that pattern. It’s not just after taking Baclofen, but hours later. In fact, I’d say peak fatigue roughly coincides with maximum time since taking Baclofen. Mid-afternoons are the worst, when I haven’t usually taken Baclofen since mid-morning, and it’s starting to wear off. So is it fair to blame the Baclofen?
Tina, I take less Baclofen at the weekend as I try to only take it when I need it i.e. so I don’t look like I’m imitating John Cleese when walking around in the ofice
BUT come the weekend, I have to have little sleeps (3/5 hours) on Sat & Sun usually. Today, I dosed in the car on the way home and then on the sofa for about an hour earlier - last baclofen taken at about 12,40 and still at work wil about 4ish
On that basis, I have to agree Baclofen is not the cause, for me it’s just an extra thing that makes me go a bit dopey 20 mins after taking it for a short while…
