Never Feeling 100%

By mnyer

1 min read

I was diagnosed with MS about 2 years ago after losing sight in my left eye (optic neuritis). Thankfully after 10 days of steroid treatment my sight returned although I can’t see colors as vividly from that eye but no real damage done.

I have not relapsed and have been taking my medication without any real side effects. For me, my issue with MS is that any symptoms I believe I have can be explained away by something else or there isn’t much that can be done.

I have felt that my stamina has slowly changed and the aches and tightness of my body have increased. How do I distinguish the cause of my fatigue from outside environmental factors such as a demanding job and finishing graduate school or is it my MS? Is the level of fatigue I feel normal or is it magnified by my MS?

I have sore and tight muscles constantly and I can’t remember when I haven’t felt this way. Is it because I don’t stretch enough? I have some tingling sensation in my arms and legs that comes and goes from time to time; is that a symptom or did my muscles “fall asleep” as they say? It's questions like these that I struggle to answer, and I don’t know if they are caused by my MS or if it just the normal pains and struggles of everyday life.

Having MS has changed my day to day life in small ways; I have to go to sleep earlier and struggle to hear my alarm clock in the mornings, and I now have two alarms on my phone reminding me to take my medication no matter where I am or what I am doing.

I have my mobility, my speech and metal clarity. My struggles are those that I can live with, but it is mentally difficult to feel like you don’t feel physically 100 percent. Especially when these symptoms feel minuscule compared to the symptoms that others suffer from MS.

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DonnaFA Member
Hi <inline-mention user-id="4038436" username="mnyer"/> , thank you for the bravery it took to share your story, thoughts and feelings. We're proud to be part of your village. It is easy to look at others and be tempted to compare ourselves. Your experience may be different, but it is no less valid. Be gentle with yourself! and give yourself the grace to come to terms with your personal experience of MS. <3 We're glad you're here! -Warmly, Donna (MultipleSclerosis.net team)
deese Member
MNYer, When I read your story I felt as though I were reading about myself. I too was diagnosed 2 years ago and found out because of optic neuritis in my left eye. My eye sight is back but will act up especially if I am hot. I have soreness and tightness. I am on the move to adapt to a more active lifestyle to try to differentiate what may be just sore muscles or not. I too have my mobility, my speech and metal clarity. I don't have an answer either but our stories are so similar!
1. mnyer Member
 Hi Deese, It's great to hear from individuals that are dealing with the same issues as I do. I've mentioned it to my neurologist and their feedback was to stretch more and take up yoga. :/ Having MS I've beena bit more vigilant as to what's going on with my body so when I got that resonse, it really made me question myself. "I'm I over analyzing normal aches and pains?". But anyways, it is encouraging to hear from you and I've recently started a more active lifestyle as well. Although, I don't feel any different from muscle tightness stand point, I do feel stronger overall. Fingers cross, hopefully with time, I'll have a better results. Hope you gain improvements on your journey and if so, please let me know what you did!
fawsiya Member
MNYer, thank you for sharing. Your questions are the same questions i have asked. The worst part is not being able to trust yourself anymore, how much is me? How much is MS? I’ve come to realise that the answer doesn’t matter so much as how you learn to deal with the inconveniences, like multiple alarms (I have 2 alarms, keep them on the loudest setting), or keeping a notepad for work, leaving post it notes on the door so you don’t forget to take your ID badge to work (so many times I’ve done this). All this is frustrating and tiring work but at the end of the day life stops for no one, so you find the best way to keep going forward.