Misunderstood. Fatigue - a hidden symptom of multiple sclerosis

I have been asked by readers to create a more reader friendly version of my blogs.  So you will find this version at the bottom of each blog.

There is also an infographic and some different language versions of the easy read at the bottom (Mandarin Chinese, Hindi and Spanish for now)

So I have multiple sclerosis (MS) and have had for many years.  For all intents and purposes, no-one would have known up until now, unless I had told them, that I had MS.  I look just fine.  This was until recently.  So at the start of March I began to suffer more with severe MS fatigue.  I would occasionally get days like this, but they were usually once every one to two months, not almost every day as this now was.  The strength of this fatigue makes it, for any sensible person, near enough impossible to get out of bed, let alone do anything very much (I have to confess to not ever being very sensible, but always very determined and very stubborn minded).

So, even though I was suffering this fatigue I continued doing pretty much most of my daily things.  I would still work (fortunately from home) and still go down the pub after work.  Then by mid May, I finally had to admit to myself that this wasn't going away any time soon, albeit I had some better days, and I really needed to give myself a break.  So I started using my crutch to get about with.  Well the looks I got and still get when I walk into the pub with it - 'What's wrong with her?', 'look at her veining an injury' etc...  And I have unfortunately overheard comments from people within the pub regarding 'exaggerating' the problem.  It has got to the point where I have actually felt ashamed and embarrassed to go in, rather than the shame being on them.  What made it worse was that on my better days, I didn't need or have the crutch, which somewhat confused people.  I also didn't (I say didn't, but this is still the present situation) use the crutch around the pub itself (I am okay over short distances).  But fatigue doesn't run to a schedule and isn't constant.  There are good days and bad days.  Like most things in MS it is relapsing remitting / it comes and goes.

Well, my advice to anyone who knows someone who is say using a mobility aid or similar (or just have a hidden disability), but you don't understand why (or what) - just ask the person.  They won't bite.  More often than not they will be truly grateful that you've shown the initiative, willingness, and interest to learn about their condition.  But don't just make assumptions based on uneducated rumour and gossip.

So what is MS fatigue?  Well I should firstly caveat that everyone's fatigue feels different - this is just my experience.  The only way you'll know what someone's fatigue is like is to do as above (ask them).  But the general things about MS fatigue that you'll hear online are that this is not just exhaustion (I can confirm this) - it does not go away with sleep, it is not brought about by a hard days graft.  It is sudden, all disabling, slam the breaks on tiredness.  

For me, at its worst, it feels like every muscle that exists in your body - from those around your eyes, your throat, your lungs, your brain, your legs, your arms etc... - are twisted and wrung tight (like a tea towel) of every last drop of energy.  I struggle to breathe, I struggle to open my eyes, I struggle to think, I struggle to walk, I struggle to lift things, I feel lightheaded, I feel nauseated, my legs feel heavy or like jelly, that they are going to go from under me and that they are not my own, and I cannot sleep because of the pain I am in.  It feels like what I would imagine rigor mortis would feel like should you be alive to feel it.  This is fatigue.  So when people mock and belittle me for using a crutch, you can perhaps see how this would make me feel (a little on the short tempered side!).  A crutch doesn't make the pain go away and I don't really look like I walk any better or worse with/without it.  But it does help with things like stability (due to the lightheadedness and jelly like feeling in the legs) thus preventing falls, and also means you have to put in less energy, so saves a little bit on this precious commodity.

If you have any questions, please do ask and I'll do my best to answer them.

More reader friendly version -

- Fatigue is a hidden symptom of MS

- People with fatigue can look fine, but be unable to get out of bed

- People with fatigue can look fine, but need to use mobility aids to help them get around

- Fatigue can change on a day-to-day basis.  So someone using a mobility aid one day, may not be the next

- If unsure why a person is using a mobility aid, maybe just ask them (politely and sensitively).  They may appreciate you actually taking the trouble to find out.

- MS fatigue is not exhaustion.  It is a sudden, all disabling, slam the breaks on tiredness.

- Everybody's fatigue will be different.  But for me some of the worst symptoms can include breathing difficulties and being in so much pain that I cannot sleep.

- A mobility aid doesn't make the fatigue go away, but it can help with things like stability (so prevent falls) and reduce the amount of energy needed to get about.

Mandarin Chinese

- Píláo shì MS (duōfā xìng yìnghuà zhèng) de yī zhǒng yǐncáng zhèngzhuàng

- Yǒu píláo zhèngzhuàng de rén kàn qǐlái kěnéng wánquán zhèngcháng, dàn shíjì shàng kěnéng lián chuáng dōu xià bù liǎo.

- Yǒu píláo zhèngzhuàng de rén kàn qǐlái kěnéng wánquán zhèngcháng, dàn shíjì shàng kěnéng xūyào shǐyòng zhùxíngqì děng xíngdòng fǔzhù shèbèi lái bāngzhù zìjǐ xíngdòng.

- Píláo chéngdù kěnéng měitiān dōu bù yīyàng. Yīncǐ, yīgè rén zài mǒu yītiān kěnéng xūyào shǐyòng xíngdòng fǔzhù shèbèi, ér dì èr tiān què kěnéng bù xūyào.

- Rúguǒ nǐ bù quèdìng yīgè rén wèishéme yào shǐyòng xíngdòng fǔzhù shèbèi, yěxǔ kěyǐ lǐmào qiě mǐngǎn de xúnwèn tāmen. Tāmen kěnéng huì hěn gǎnjī nǐ yuànyì huā shíjiān zhēnzhèng liǎojiě yuányīn.

- MS yǐnqǐ de píláo bìng bù zhǐshì pǔtōng de “lèi”. Tā kěnéng shì yī zhǒng tūrán chūxiàn, ràng rén wánquán wúfǎ zhèngcháng huódòng de píbèigǎn, jiù xiàng shēntǐ tūrán cǎi xià le shāchē yīyàng.

- Měi gèrén de píláo biǎoxiàn dōu bù yīyàng. Dàn duì wǒ lái shuō, yīxiē zuì yánzhòng de zhèngzhuàng kěnéng bāokuò hūxī kùnnán, yǐjí téngtòng yánzhòng dào ràng wǒ wúfǎ rùshuì.

- Xíngdòng fǔzhù shèbèi bìng bù néng xiāochú píláo, dàn tā kěyǐ bāngzhù tígāo wěndìngxìng (cóng'ér jiǎnshǎo shuāidǎo de fēngxiǎn), bìng jiǎnshǎo xíngdòng shí suǒ xūyào xiāohào de néngliàng.

Hindi

- Thakaan MS (Multiple Sclerosis) ka ek chhipa hua lakshan hai.

- Thakaan se joojh rahe log dekhne mein bilkul theek lag sakte hain, lekin vaastav mein ve bistar se uthne mein bhi asamarth ho sakte hain.

- Thakaan se joojh rahe log dekhne mein bilkul theek lag sakte hain, lekin unhe chalne-phirne ke liye mobility aids (chalne-phirne mein sahayak upkaran) ka istemaal karna pad sakta hai.

- Thakaan har din alag-alag ho sakti hai. Isliye jo vyakti ek din mobility aid ka istemaal kar raha ho, ho sakta hai ki use agle din iski zaroorat na pade.

- Agar aapko samajh nahin aa raha ki koi vyakti mobility aid ka istemaal kyun kar raha hai, to shayad unse vinamrata aur samvedansheelta se pooch lena behtar hoga. Ho sakta hai ki ve is baat ki sarahana karein ki aapne vaastav mein iska kaaran jaanne ki koshish ki.

- MS ki thakaan keval saamanya thakaan nahin hai. Yeh achanak aane wali, poori tarah se aksham kar dene wali thakaan ho sakti hai, jo aisa mehsoos kara sakti hai jaise shareer ne achanak brake laga diye hon.

- Har vyakti ki thakaan alag hoti hai. Lekin mere liye, sabse gambhir lakshanon mein saans lene mein kathinai aur itna adhik dard hona shaamil ho sakta hai ki main so bhi nahin paata/paati.

- Mobility aid thakaan ko khatm nahin karta, lekin yeh sthirta banaaye rakhne mein madad kar sakta hai (jisse girne se bachne mein madad milti hai) aur chalne-phirne ke liye aavashyak urja ki maatra ko kam kar sakta hai.

Spanish

- La fatiga es un síntoma oculto de la EM (esclerosis múltiple).

- Las personas que sufren fatiga pueden parecer perfectamente bien, pero ser incapaces de levantarse de la cama.

- Las personas que sufren fatiga pueden parecer perfectamente bien, pero necesitar utilizar ayudas para la movilidad para poder desplazarse.

- La fatiga puede cambiar de un día para otro. Por eso, una persona que utiliza una ayuda para la movilidad un día puede no necesitarla al día siguiente.

- Si no estás seguro de por qué una persona utiliza una ayuda para la movilidad, quizá simplemente puedas preguntarle (de manera educada y respetuosa). Es posible que agradezca que te hayas tomado la molestia de averiguarlo.

- La fatiga causada por la EM no es simplemente agotamiento. Es un cansancio que puede aparecer de repente y ser completamente incapacitante, como si el cuerpo accionara bruscamente los frenos.

- La fatiga será diferente para cada persona. Pero, en mi caso, algunos de los peores síntomas pueden incluir dificultades para respirar y sentir tanto dolor que no puedo dormir.

- Una ayuda para la movilidad no hace desaparecer la fatiga, pero puede ayudar con cosas como la estabilidad (y así prevenir caídas) y reducir la cantidad de energía necesaria para desplazarse.