@Hayla

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Hayla

Fatigue/Exhaustion

Ive been recently diagnosed and have some doubts bout this fatigue issue. Almost everyone I speak to mentions 'periods of fatigue/complete exhaustion. Well Ive been /constantly/ exhausted for the past 18months and most days moving is a chore. I try to go on with my life as per usual but sometimes its impossible cause if I force my body a bit too much my brain goes blank (lets just say that it is common for hubby to arrive home and catch me staring at whatever trying to remember what exactly was I supposed to be doing). Does anyone share this experience? Is it common at the 'beginning' of MS? All this makes me feel completely useless to be honest.

pottypete

@pottypete

<a href='https://shift.ms/community/people/hayla/' rel='nofollow'>@Hayla</a> It's probably the most issue with sufferers. It can come and go, but generally we all feel the same as yourself. I too have blank moments/days, lol, it's called cognitive fogging. I think a great many of us also suffer this, so take heart, you're not alone.

JasFromTas

@JasFromTas

Hey Hayla! I know exactly what you mean by fatigue! I have felt pretty buggered for about two years (and had even gone to my GP about it, months before anything else MS-ish cropped up) I think the term 'period' of time is a very loose term. I suppose a 'period of time' could go on for years. But that is a pretty deflating idea for anyone living it. On the upside I have now been on DMD for about 6 months and do have days where I am a lot better (I wouldn't go so far as to say bubbling with energy), but there is improvement, I think. So don't despair - I hope this is the case for you too! Re cog-fog, very familiar to me, and like Pete said it is pretty common. Just find some ways to help. I saw an occupational therapist (especially when I went back to work after 3months off), i cant recommend this enough, it has helped me heaps! I now right everything down. Thoughts lists conversations everything. My booklet rapidly fills but it is my brain hard-copy. I find this helps a lot. And adapt what you do in life to help your brain. I used to work two jobs, the main one being night duty in a trauma intensive care unit/emergency department. Lots of thinking on my feet! Which, to be honest, I couldn't do now (both feet and brain a but slow to respond!) so I now work part time in what was my second job, much less stress, adrenalin etc, and much better for my brain! Anyway, know you are not alone! Sorry for the massive answer! :-) Jas

Cazzzzzy

@Cazzzzzy

Hi Hayla! Totally know what you mean! ~ I carry a constant heavy fatigue with me that is always there... I have often just stopped and stared as you mention too and when it happens when I'm in the middle of a conversation with someone it can take a minute to try and jog my mind into what we were talking about in the first place... I tire so easily but I find I need to keep moving somehow as I'm sometimes so much heavier when I haven't moved for ages but then I get so tired again and round I go again..... What type of MS do you have? xxx

Stumbler

@Stumbler

<a href='https://shift.ms/community/people/hayla/' rel='nofollow'>@Hayla</a>, yes, fatigue is major issue for most of us. We seem to have a finite amount of energy for the day. Use more than you have available and you'll suffer the next day. It's very much a question of striking a balance of what you can and can't do in a day. Have a read through of the "Spoons Theory" for an analogy :- http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Hayla

@Hayla

<a href='https://shift.ms/community/people/pottypete/' rel='nofollow'>@pottypete</a> Ty. It just gets me so frustrated and depressed to not be able to do everything I need/set myself to do...but slowly Im learning to not push myself too far. -.-' <a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a> DMD?? Im unfamiliar with the term... Well, I find the lists help a lot. I prefer to hand write them instead of typing them on the computer as my doc suggested after I told him that nowadays more times then not my handwriting is almost illegible even for myself, I like to think it helps me to better plan my day and memorize important stuff Im currently unemployed, have been for the past 3years more or less, so Ive managed to adapt my routine to my energy supply. It still is frustrating when I cant get everything done but thankfully Ive got a wonderful, understanding and supportive hubby with plenty of patience (most days) by my side. =) No worries, I often ramble on and on bout whatever without even realizing it, but I thank u for ur long reply. =) <a href='https://shift.ms/community/people/cazzzzzy/' rel='nofollow'>@Cazzzzzy</a> Well Ive been in similar situations. Once I ran into my exboss, we were catching up and I suddenly just went blank while she was talking bout how things were going at the hotel where I used to work. She kept rambling and asking me questions and I just couldnt make sense of anything she said, it was like my brain couldnt 'translate' whatever it was. Thankfully hubby came up to me meanwhile and saved me from embarrassing myself - that was over a year ago and it got me really upset cause I coundnt understand why my brain was acting the way it was. Relapsing-Remitting - if Im getting the translation right. =) <a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@Stumbler</a> Ty, that was very helpful. Its a pretty difficult business when u try to convey how u feel to people who never had to worry bout how to manage the lil day to day things - like choosing between a 'body' shower VS Shower+washing hair in the mornings, depending on what u have to do that day and ur energy supply. -.-'

Hayla

@Hayla

I was just wondering if this fatigue business has something to do with 'active lesions' - whatever that means? Does it get less pronounced when those lesions stop being 'active'? Oh and please, someone cares to decode the 'initials'? Im Portuguese and even if at times my brain seams to work best in English then my native language, they r quite the mystery to me...lol Ty =)

Stumbler

@Stumbler

<a href='https://shift.ms/community/people/hayla/' rel='nofollow'>@Hayla</a>, This post describes MS symptoms in a novel way:- https://shift.ms/p/topic/describing-your-ms-symptoms/ OK, Lesions are areas of damage on our Central Nervous System. They interfere with the messages going to and from the brain to our nerve endings. Without correct information, the brain cannot make the right decisions for us. This gives rise to numbness, tingling and all manner of issues. DMDs are Disease Modifying Drugs. They used to be known as the CRAB (Copaxone, Rebif, Avonex, Betaferon) drugs, but there are now more available, e.g. Extavia, Tysabri, Gilenya......

reddivine

@reddivine

Something else to get checked : ask the GP to run a blood test for thyroid levels. Under-active thyroid can actually leave you staring at the wall thinking," I'm just sooooooo tired...." and thats on TOP of feeling shattered with MS. So get it checked, its a simple blood test. Fatigue: you just have to realise WHEN your are worse, for me its afternoons. And then realise you HAVE to sleep for a couple hrs in the day, or yr brain just does not work!

Hayla

@Hayla

<a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@Stumbler</a> Oh! I started on Extavia last September but according to my new doc (and the fact that I had an MS flare last December) it was the wrong drug for me so Im switching to Tysabri on the 8th. =) Yeah, I get what lesions r, what confuses me is the 'active' bit...does it mean that the MS is active? Or is it bout the sequels I have from when the lesions happened? O.o <a href='https://shift.ms/community/people/reddivine/' rel='nofollow'>@reddivine</a> Ive actually got the blood tests/thyroid ultrasound booked for next Monday/Tuesday. Hoping to get the results by the end of next week. Doc said that the thyroid altered might help explain why sleeping drugs dont seam do work much on me after a week of taking them. Napping might help some on the short run but on the long run it makes everything worse. Ive got problems falling asleep, no matter how tired I am my brain just wont shut down, if I happened to nap during the day (no matter how appealing it sounds) I'll just end up not sleeping at all at night. -.-'

Stumbler

@Stumbler

I've never really understood the term, "Active Lesion". The MRI scan is a point-in-time snapshot. It can show recent activity. Whether that is classed as active seems subjective to me. Here's some details of the MS activity :- http://www.mstrust.org.uk/information/publications/msexplained/what_happens_in_ms.jsp

Hayla

@Hayla

ty <a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@Stumbler</a> =) Its just so confusing....think Im gonna ask that to my doc next time I see him....if I remember that is. =P I swear sometimes my memory is worse then that of a goldfish. -.-'

SEF71

@SEF71

Hi Hayla i know what you mean! ....My fatigue levels all over the place at the moment (I was diagnosed recently too) i seem to be able to keep going for a while and then I'm a mess and need to nap or just take a break for 5 minutes or so and get upset with myself when I want to do something but my body won't let me !!!......also I have often just stopped in the middle of something and wondered what I am doing or need to do next ! .... Lists help lol.

Hayla

@Hayla

<a href='https://shift.ms/community/people/sef71/' rel='nofollow'>@SEF71</a> True! It just gets so frustrating to have to stop whatever every 10mnts or so, makes me feel rather useless to be honest. -.-'

SEF71

@SEF71

<a href='https://shift.ms/community/people/hayla/' rel='nofollow'>@hayla</a> ... It sure does but I'm trying not to beat myself up about it .. You shouldn't either xxx

Hayla

@Hayla

true <a href='https://shift.ms/community/people/sef71/' rel='nofollow'>@SEF71</a>, I try not to but it never fails to make me feel guilty to have Hubby (or anyone else) do stuff that /I/ was supposed to do but really cant. -.-'

SEF71

@SEF71

<a href='https://shift.ms/community/people/hayla/' rel='nofollow'>@hayla</a> I agree I feel guilty when I make plans to do things,then when I've woken up and come round I realise I just can't so now I try not to plan major things just go day to day xx

JasFromTas

@JasFromTas

Ola ola (will make this shorter, I promise) Re "active lesions" Yes, a MRI is a snapshot of in time of the brain/spine. So cannot actually detect 'movement/action' as such. BUT: There are two types of MRI: normal (with no contrast) will show all lesions (active (new) and non active(old)) will look EXACTLY the same. A MRI with contrast (also known as gadolinium - or gd- as this is the Type of contrast, though there are different contrasts out there these days) Contrast will make newly forming 'active' lesions glow, enhance (or, "gd-enhance") or, 'contrast' against the rest of the brain/spine. This is because the contrast (put in the blood through a drip) is attracted to areas of inflammation (like where a new lesion is 'actively' forming), but not to where there are old lesions (where there is no inflammation) the old lesions will still show up on the MRI, but not 'glow'. In RRMS, in a relapse there will be (theoretically) active areas of new lesions inflaming (and thus glowing in the MRI), when in remission, nothing should glow. I think 'active' is a bit of a wired term, because its not like the lesions are dancing around having a party, but I try to think of it on the micro level, where there would by inflammatory enzymes, white blood cells and macrophages etc - and they - the little creeps - are being active, having a party on your neurones, and causing the lesion. Does that help, or did I just ramble again? XxJas PS I am not sure that the 'activity' level of lesions will influence out fatigue. I have been out if relapse for a few months now, but cannot say my fatigue is all that much better!

Hayla

@Hayla

<a href='https://shift.ms/community/people/sef71/' rel='nofollow'>@SEF71</a> Yeah, but there r things - like house chores - that I cant exactly get out of. Its like, if I do them I know I'll be out of it (learned it the hard way) for the next few days, but If I dont do them I'll feel mighty guilty cause hubby will have to do them on top of the long hours that he does. -.-' <a href='https://shift.ms/community/people/jasfromtas/' rel='nofollow'>@JasFromTas</a> Ola! =) Yes it does, ty =) Well, when I have a 'crisis' I notice that I feel even more tired then what I feel now - to the point where I need help to do the simplest things cause I completely lack the energy. -.-'

mschronic

@mschronic

Hey <a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@Stumbler</a> I read the spoon theory for the first time it was absolutely amazing! Thanks for that.

StallionicChampionic

@StallionicChampionic

Hiya, I agree with <a href='https://shift.ms/community/people/Gingus/' rel='nofollow'>@Gingus</a> writing things down helps loads. In England we've just reached the dizzy heights of over 20degC and the fatigue and brain fog start to kick in more with me. Tick or cross off the jobs you've done and you'll find things alot easier. regards

Hayla

@Hayla

Ty, that seams to be a good system <a href='https://shift.ms/community/people/Gingus/' rel='nofollow'>@Gingus</a>, gonna give it a try =) <a href='https://shift.ms/community/people/StallionicChampionic/' rel='nofollow'>@StallionicChampionic</a> I understand u pretty well, the weather round here has been a bit bipolar, one day its bellow 20ºC's and the next already feels like 25ºC. Think what is messing with me more r the sudden changes in temperature and pressure. -.-'

pottypete

@pottypete

The weekend was marvelous, loads of energy. Yesterday though, after the weather change, I took a change for the worse. I'm stiff and clumsy, have speech difficulties, am completely exhausted doing just minor things and can hardly stay awake. The weather definitely affects me.

Hayla

@Hayla

My fatigue has been slightly better lately, Im thinking it has something to do with the drug change? Hopefully yes, cause its a blessing to have a bit more energy then what I used to not even two weeks ago. =)

Cazzzzzy

@Cazzzzzy

That's great news to hear Hayla! :) Hope it continues for you!!! xxx

Hayla

@Hayla

ty <a href='https://shift.ms/community/people/cazzzzzy/' rel='nofollow'>@Cazzzzzy</a>, but methinks I overdid it yesterday cause I woke up today completely wiped out today..but am still hoping that tomorrow will be a better day energy wise. =P

Cazzzzzy

@Cazzzzzy

Yeah I find I over do it if I have a better day and then feel the overdid it feeling and can really pay for it the next day... Just take each day at a time and take it easy, sleep well, eat well and I hope you have a better day again tomorrow :) I also find meditation helps me and de-stresses which can lift fatigue.. xxx

Hayla

@Hayla

True <a href='https://shift.ms/community/people/cazzzzzy/' rel='nofollow'>@Cazzzzzy</a>. I try to meditate every day, its very good not only for stress but also to regain balance and put things in perspective. =)