Scary Fatigue

[kittee2015]

Ok got one more question,I've had a lot of questions lately but has been harding getting the courage to put them up and not sound completely nuts into the bargain.

So a few weeks back I was exhausted and made the mistake of trying to meet a friend for coffee at my local shops.It ended badly:

First of all I do my best to catch public transport to keep up my walking to keep the leg moving that doesn't basically but this particular day I got on the bus and had a  panic attack(prolly only the 3rd time i've ever panicked) I tried to get on with no bus pass and no money on me for a fare.Bus driver was lovely and a found a dollar in the bottom of my bag and he let me get on with that ,,but the episode got worse from there.

When i got to the shops i wandered around in circles to various shops trying to buy a coffee,except again i realised i didn't have money on me but couldn't function enough to go to the ATM so I sat on a bench staring at nothing for half an hour or however long till my friend got there ,by the time she reached me I was incoherent and phased out completely

I had money in my wallet the whole time just couldnt get my mind around that fact

I was just too exhausted to think function or make any decisions,its was scary as heck,scared her and me and I dont want it to happen again.had no idea  fatigue/exhaustion can get to those levels.

Any tips for extreme fatigue? thaat was a nightmare ,didnt feel like I was on the planet and i'm a highly independent person whenever possible.

[shannon_xray]

I am at work now, shhh..don't tell anyone I am on the internet..LOL

It is getting more and more difficult.  Today is a bad day, my Ritalin isn't working at all this morning.  I have ok days and bad days.  The last good day I had was about 4 years ago, before I got diagnosed.  

I am just hard headed and stubborn, not amazing.  All of us, yourself included are remarkable just to get through any day no matter what that day entails.  

This fatigue is awful and my mind is definitely more blank when I am like this.  I am lucky to have a work crew that understands and cares.  The orthopedic surgeons I work for are pretty amazing and compassionate.

I have a brain MRI on 9/15 and follow up with my neuro on 10/1.  I hope there are no new lesions, I am afraid of the side effects of the disease modifying drugs!

[kittee2015]

sorry Shannon my hat goes off to anyone who can work at all with neuro issues lets alone working full time,you're amazing whether its you need  to work or not work !!

Yeah reading the other reponses here im thinking towards cog stuff not rather sleepiness too

Fatigue is so very affect badly (sorry mind blank) Hopefully they can find something to help..when are your next set of test to go forward?

I wish you luck with your upcoming test miss/mrs guinea pig!!!

[shannon_xray]

I look at it like this.  First, forgive me, I didn't read all the posts here because reading a lot is a chore.  I read some and skimmed, but was particularly interested in your episode.  But the way I see it, it would seem that the fatigue exacerbated your cognitive issues.  I have been tested and screened for every disorder on the planet it would seem.  You see?  When I get real tired in the afternoon, my cognitive ability falls apart.  I don't even speak english anymore..lol

I don't have diabetes, I take a lot of vitamins..the only logical conclusion for me is fatigue makes everything else worse, though fatigue was my primary complaint that sent me to doctors for years.  

Don't be impressed, I HAVE to work.  Too many others depend on me.  I am an x-ray tech and the cognitive issues around patients isn't fun.  All day yesterday I was instructing patients to do the opposite of what I really wanted them to do.  It lasted ALL day!!  

My neuro is experimenting with different meds for my fatigue.  He is trying to keep me in the work force.  I have a follow up MRI on my brain and another appointment.  Sometimes I feel like a guinea pig :)  

Hope you are doing well!

Shannon

[kittee2015]

Hi Shannon,

I didn't know what would happen either Shannon it was a lesson well learnt ,
Fatigue is just something everyone deals with (normal tiredness) but I guess if you add cognitive difficulties into the mix and our exhaustion levels( which not everyone deals) with then you get a mess ,

But push through everything was my motto before I learnt that lesson

It was scary , but hopefully you're smarter than I was and you get the opportunity to slow down and collect yourself

I don't work except my own hours so have the opportunity to rest one day,do errands or whatever the next,rest one day etc, ...so in that way resting does help but it takes an awful lot of resting to feel normal again if that makes sense.Your GP may have some ideas for you vitamin or tablet wise to help with fatigue levels,to help speed up the return to normalcy I guess,,cant get it into words but hopefully....

Very impressed your working full time though that's great

This forums great the people here should be able to give you ideas to help so by all means ask your question on here,then you can take those ideas to the GP *smile*

P.s we still dont know what caused the episode

[shannon_xray]

I was actually thinking about posting a question about 'what happens if you keep pushing hard when your fatigue feels crippling'.  After reading you Kittee I am nervous.  I have cognitive issues and extreme fatigue and by the afternoon at work I am so tired my head feels 'strange'.  Sometimes I speak alien when it's too much.  I am to assume this fatigue can't be beaten without resting. :/  Kinda ***** big time because I have to work full time.
Shannon

[kittee2015]

I might look into "sleep apnea" a little later down the track, my list of crap that i deal with is way very long ,I dont want to add anything more to it even in m own mind.

I sound crazy noone should have this many abnormal weird body actions but I do ,thats why I havent mentioned the childhood stuff cause we have enough of a puzzle with the stuff  have now.

But thankyou for the idea,just dont want to overwhelm my neuro cause h'es already very puzzled which is why procediure stopped last time in 2011.

really tire hope makes sense im often never sure but ty again .
Goodnight

[kittee2015]

ah yeah maybe even when I was smaller I was walking like that,is "toe walking" an actual term? I didn't realise it was abnormal?

I had much better balance on the balls of my feet than i do now, but had two legs that worked great for many years first too,feet not so much, i was forever tripping over myself or nothing at all when I walked flat foot..
so it's no wonder i resemble an old drunken penguin these days lol.

There is so much I've just accepted because my family didnt believe in illness so no doctors etc, mention the "toe walking " to my neurologist?

I also had an insanely bad memory as a child too forgot about 3 things everyday but we'd just laugh at it and Id try to not tell them when i forgot anything and just collect it the next day and forget something else on the way home. clever me writes checklists of everything before I walk out the door these days, it works

The exhaustion is a normal every single day feeling,I just push through it and not mention it ,but the last few years it's been harder to manage and the other week or whenever it was scared the heck out of so I had to voice it.cognitive difficulty is a whole diff kettle of fish now..

I had no support and no reason to think that these things weren't normal.whenever i mentioned i felt unwell or strange or whatever the only  response ever was "don't be a hypochondriac" and Id go to school and pass out at my desk half way through a lesson or collapse from the heat etc. I remember the very first time the heat affected me it was yr 4 primary...nans response was "stop being silly heat doesn't do that to kids" and that was that.

[aspen2]

Pertaining to the fatigue and cognitive trouble, something that should be done ASAP -- see if your gp will refer you for a sleep study.  We don't always know if we have sleep apnea but that alone can cause the cognitive nightmare you are describing.  

My gp refused a sleep study based on the fact that I don't snore -- however, when I finally got the study done I had severe central (no snoring) and obstructive sleep apnea.  You don't have to be old, now overweight, to have sleep apne.

Just a thought while the other stuff is being sorted out.  And if you do have apnea, more rest can calm other symptoms down!

[supermum_ms]

You've mentioned a few issues that stem from young childhood and whilst you seem to be implying your toe walking was a behavioural choice and not due to a physiological issue.....does your neurosurgeon and neurologist know that you had been toe walking from age 6-23, and stopped when your "feet started collapsing underneath me and sharp stabbing pains......result-pain returned to burning not stabbing" in 2011, which is around 17 years of walking abnormally?  

17 years of toe walking, is more than enough time to cause physical damage and it may be of significance to what you've been dealing with and definitely worth mentioning if you haven't already.

Cheers.........JJ

[kittee2015]

long post I apologise,there was no simple way to explain the history of the CRPS limbo bit I'm afraid, cause it was long frustrating and complicated

I have all my hospital files so I just double checked the dates to create the timeline,plus I must admit some of those dates have changed my life completely especially dec 2013 and may 2011 when I had to stop dancing

oh and Aug 2014 was the mis diagnosis of spinal issues/compressed nerves -(the thing that sent me down to see the neurosurgeon 8 weeks ago)

[kittee2015]

Actually I understood well but Not until 8 weeks ago(thanks to the neurosurgeon) did i think in a million years it could be that , I still dont believe it to be that but damn it fits well so cant erase the possibility

yeah had one injury which was blamed for everything originally...   I fell 2.5 m into a concrete drain when i had just about turned 19(August 2008) that's how all the limbo land started i thought ..only injury sustained was a fractured wrist and they presumed CRPS the following year (oct 2009) cause of the "hand in fire sensation" and the tremors soon after ..we thought for a long time that the injury just hadn't healed properly..but I was still dancing and tennis classes etc. at the time so pain was nothing ,just the burning was a horrible sensation(ice gel and cold washers seemed to help).
6 months after that jan 2010 i stated losing strength in my hands and that just travelled rapidly from one hand to both hands. Then may 2011 my feet started collapsing underneath me and sharp stabbing pains etc(had to stop dancing as a result-pain returned to burning not stabbing but feet continued collapsing)
Oct 2011 I saw the neuro and he said CRPS was a misdignosis cause of the collapsing feet and a recent hosp emergency visit cause my right hand went spastic with severe spasms for a number of hours after a house inspection clean up(sep 2011).
That brings us to 2012 with 2 more hosp visits that year for whatever and then dec 2013 leg became paralysed and then jan 2015 was a hosp stay for entire right arm numbness and now here we are..

Basically long history of unexplained deterioration episodes 2 per year on average  ,but heat intolerance and bowel issues and feet clumsiness all started when I was between 8 and 9 .so its didnt all stem from that injury .

I also walked on my toes from the age of 6 till i couldn't anymore back in 2011 just one of my perks, i hated shoes and hated being flat foot (cant remember why though orignally)

Enough's enough strange to be but need the issue cause solved no matter what it is

[supermum_ms]

Sorry i probably could of worded that better......one of the problems with a neurological condition like MS which effects the CNS, is that there are so many other medical conditions that can also cause some of the same or very similar symptoms but the causation is very different.

So it's extremely common when some one is going through the diagnostic process for MS, for it to seem like there is an 'MS answer' for most, if not all of their health issues and they can understandably start investing a lot of their time and emotional energy in trying to understand the symptoms of MS and at the same time learn how to manage their symptoms because MS seems to fit.    

You will probably have a better understanding on why it's in your best interest, to try to remain open minded on what might be causing it, whilst your going through any diagnosis process.......if you have already experienced years of testing, for various other medical explanations for a lot of your symptoms, at different times throughout your life and have some experience in the importance of corroborating diagnostic test evidence for any condition you've ever been suspected of having.

If you were originally diagnosed with CRPS when you were about 19, did something major happen to you in your teens, to put that specific condition at the top of your list of potential diagnosis's eg sustained a spinal or head injury?

Hopefully that will make more sense to what i was trying to say, sorry if i caused any confusion...  

Cheers........JJ

[kittee2015]

I'm not invested in anything but the questions about insane fatigue  and heat have plagued me for a very long time so any answers about that are nicely wanted

It's not me that believes I have it,it's a bundle of doctors and a neurosurgeon, all I'm sure of is that its a nerve disease of some description but that has been my belief for the last 8 yrs ever since I was mis diagnosed with CRPS and still had awful symptoms.

Whatever they end up calling it I still live with the bugger so name doesn't matter ,but by the same token If it is MS then I can get help cause its not so elusive as CRPS

Personally I think that another one is more likely, its just that MS fits too well to wipe off the table just yet

[supermum_ms]

I strongly advice you to not get overly invested in all this being MS at this stage, with out having any suggestive or consistent diagnostic evidence come in yet, it's still quite possible that it's going to turn out to be one of the mimics and not MS........if you can, please try to be open minded!

Cheers.......JJ

[kittee2015]

never mind my last oddy thing its too weird to know

[kittee2015]

oops before i sent i mean

[kittee2015]

oh dear I dint read that back sorry hope understanding possible

[kittee2015]

Hi,
Went straight to my GP the very next day like a good kitty so they are aware.prolly didnt explain it right thought

I have to say though wow thank you for the information that makes more sense than fatigue.I think I'd presume that cognitive referred just to just tripping over words and pausing mid sentence,hadn't really thought of it in terms of daily acvities,physically doing things.

The tripping over words and losing thought midsentenec a lot has really only begun in the 5 months or at least that's when it became more true and definitely more often issue.

Just on a  side note too i'm a fantastic spelling person but I've started writing everyday words rather oddly eg. "figures" came out "frigues" the other day and helpfullness looked more like heplureness I was incredibly exhasuted though as per usual so maybe It's nothing,,just odd cause im normally a really good speller,happens a lot when tired
And nope never had a problem with dyslex this is a really new thing and not fan of spell check would rather use my own noggins

Are we sure i'm not nut?i feel it very much
Better sleep buggered
night all

[slaytheday]

Hello JJ.

  I wanted to thank you sincerely for the information that you gave to kittee2015 regarding cognitive difficulties, fatigue, and lassitude.

  It helps me to have read it plus you provided your sources.  You're going to help many people with your fine and caring effort.

Blessings,

  Melinda

  
.

[supermum_ms]

"COGNITIVE DIFFICULTIES OBSERVED IN PEOPLE WITH MS:

Problems with memory
Excessive drowsiness
Low levels of initiative or motivation
Emotional "numbness"
Poor mental acuity ("fuzzy thinking")
Problems with balance, body awareness, or coordination Indecisiveness
Problems with planning or organization
Problems with abstract thinking, judgment, or reasoning
Problems understanding what you read or hear
Poor concentration
Distractibility
Tangentiality (your mind wanders, you can't stay on task)
Impulsivity or disinhibition (you can't control or restrain your impulses)
Preservation (you "get stuck" on a thought, or a behavior)
Problems processing intense, complex, or fast moving sensory input
Problems with recognition (for instance, you can see it, but it doesn't register)
Processing delays (afterimages, trails, ringing in your ears)
Spatial disorientation (you get lost on the way to a familiar place)
Poor reflective awareness (you're not aware, or conscious of yourself)
Poor selective attention (you can't choose what you want to think about, look at, or listen to)"
http://www.msfocus.org/article-details.aspx?articleID=46

"Fatigue & lassitude
Several different kinds of fatigue occur in MS. For example, people who have bladder dysfunction (producing night-time awakenings) or nocturnal muscle spasms, may be sleep deprived and suffer from fatigue as a result. People who are depressed may also suffer fatigue. And anyone who needs to expend considerable effort just to accomplish daily tasks (e.g., dressing, brushing teeth, bathing, preparing meals) may suffer from additional fatigue as a result.

In addition to these sources of fatigue, there is another kind of fatigue — referred to as lassitude — that is unique to people with MS. Researchers are beginning to outline the characteristics of this so-called "MS fatigue" that make it different from fatigue experienced by persons without MS.

Generally occurs on a daily basis
May occur early in the morning, even after a restful night’s sleep
Tends to worsen as the day progresses
Tends to be aggravated by heat and humidity
Comes on easily and suddenly
Is generally more severe than normal fatigue
Is more likely to interfere with daily responsibilities
MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment."
http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Fatigue

Hope this information and links will help explain about MS fatigue and the level of cognitive issues that are associated with MS...

Cheers.......JJ

[supermum_ms]

Wow that sounds like it would of been a really scary experience....hugs!

I think you are describing an episode of quite severe cognitive dysfunction, rather than the types of 'fatigue' and cognitive issues MSers typically experience.

Are you sure you didn't experience a severe hypoglycaemic episode or reacting to a medication or actually experienced a full on panic attack? If you were "incoherent and phased out completely" did you end up going to the ER?

To be honest i'm not sure 'fatigue' tips would actually help with what you've experienced because if you were still wandering around, it seems to be predominantly effecting you cognitively and quite severely, i definitely think you need to mention this episode to your doctor!

Hugs.......JJ  

[immisceo]

First of all, you don't sound 'nuts'. These sorts of episodes are incredibly distressing, and I for one can relate.

City centre where I live is not large, and certain parts of it I've visited frequently for the better part of a decade, but sometimes I get lost. Not "where's-that-address-again?" lost, but "why-am-I-in-town-how-do-I get-home?" lost. It's easy to get panicked in these states. It doesn't happen often, but after a very bad one, I've just always made sure to have my travel card with me as well as fare to get home by taxi. If worse comes to worse, I can hop in a cab and get home.

Interestingly, I've never interpreted these experiences as fatigue, I've interpreted them as cognitive impairment. But who's to say one doesn't lead into or exacerbate the other. Cognitive issues can and do happen in MS. I'm on a drug study and get tested on them regularly. My issues can be with what are termed "executive functions".

Issues in this area can be found during a good-quality neuropsychological exam (comprising many tests). Don't be put off by the name. This is about brain function as a whole. https://en.wikipedia.org/wiki/Neuropsychological_test

Now, when it comes to what I do consider fatigue, the travel card and fare halp as well, but I also have a collapsible hiking stick in my bag in case it really is just fatigue. Then I can make my way to the park, sit down, rest, collect myself, and have a walking stick to help when I feel ready to get back up. Coffee in a cafe can be helpful too. I do keep my modafinil in my bag, but so far that hasn't really helped.

Obviously we don't know yet if you do or don't have MS, but I think the above suggestions can still be useful regardless of what is at the root of your health problems. I'm so sorry you experienced this, but you're not alone.