I’m in Such a Bad Mood; Heat and MS When There is No Heat

Ugh! I am in such a bad mood today! From the moment I woke up I was just… angry? You see, yes, I am sleeping way better but I still don’t wake up feeling rested (like most of us with Multiple Sclerosis don’t feel). In fact, I really can’t remember the last time I woke up and felt like I actually got the amount of sleep that I did; refreshed and recharged, ready to start my day! Pft… No… Just fatigue. Doesn’t seem to be secondary (the result of poor sleep or some other symptom) since I am actually sleeping again. So that tells me it’s primary (lassitude). Fatigue for no reason other than the fact that MS IS BS.

After the 5 days of IV steroids (Solu-medrol) followed by a Prednisone (oral steroid) taper I felt pretty good; I was wired and getting so much done! Well, in the last few days I have felt like my symptoms are all flaring again! The fatigue is unbearable and my vision has been insane! It actually hurts to look at the computer screen most the time! I could film myself with my phone and see my nystagmus (my eyes wobbling left and right) while I lied down. I feel dizzy on top of this so not only is walking in a straight line difficult but sometimes I feel sick to my stomach. Even with my eyes closed I feel like I am moving, it’s terrible. Just to name a few things.

Now, what I have always wondered is why is it that during the summer, on days where the temperature spikes over 110 degrees (Fahrenheit) does my MS act up despite the fact that I have not left my air conditioned room that I keep at a steady 70 degrees? I have heard people theorize that, “maybe it’s the barometric pressure?” but from what I can tell on my phone it has remained the same? Humidity doesn’t seem to be any different either. They sell little “home weather station kits” that allow you to monitor everything you could think of and part of me wants to buy one so I can know exactly what is going on around my house so I can see if anything correlates with how I feel because this is driving me insane! I should not be feeling like this! I have been doing everything I can to reduce inflammation and just better my health yet I still feel like my immune system is on fire!

Yesterday I had one of those “I just can’t do this for another 40 years” kind of days. I couldn’t get myself up to do anything, my body was just dead! Like every atom in me that makes me who I am weighed 10 times as much as it should! All I wanted to do was lie down even though mentally I had a bunch of stuff I wanted to do. But I did spend some time reading through the May 2017 MS Research Update magazine from the MSAA (Multiple Sclerosis Association of America) hoping I would see something that would spark some hope in me. While there is a lot going on there was nothing that really stood out to me, nothing promising in regards to reversing the damage that MS has done. I want this visual and vestibular crap to go away! My quality of life would be so much better if I could just get rid of either that or my fatigue but as of now it looks like all I can do is learn to cope with it.

So I am in a bad mood today because I feel terrible and have no idea why. I am in a bad mood because there doesn’t seem to be anything out there to ease the symptoms that are making me feel terrible. I am in a bad mood because I just don’t know what to do. There has to be something. But I haven’t been able to think clearly lately so I just can’t figure this problem out. I’m just tired; physically, mentally, emotionally, everything. I’m sick of being tired and tired of being sick.

Matt Allen G

I was diagnosed with Multiple Sclerosis (MS) in 2010 at the age of 20. It's been a battle ever since and I have always shared my story and struggles online!

9 thoughts on “I’m in Such a Bad Mood; Heat and MS When There is No Heat

  • September 4, 2017 at 11:56 pm
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    Matt- I congenially feel exactly what you describe. Motion sickness,dizziness,nausea are the most glaring symptoms I had dealt with all of my life until I had paralysis then O.N. which is when I was MRI’ed and dx.Currently see an ENT where I underwent Vestibular testing and dx. One of the beloved things I find about your blog is you don’t seem all Mickey Mouse when the tough gets going,you really share the ups and down so many of us face. Here’s to all of us hanging in there. Do you feel your new treatment has been effective with it not being given very often? Have you done IVIG?

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  • September 5, 2017 at 3:15 pm
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    I know How You’re feeling. We have had so many fires around here that we havent seen the sun in a week!! I too have stayed inside but the air is smoky.
    My spascity is 24/7 and my attitude has been Poor. I JUST WANT THIS TO STOP!! I need to sleep, I want this to get better and Its awful outside.
    There…i’ve vented! Time to move on

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    • September 5, 2017 at 3:49 pm
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      I bet like me you cannot wait for winter… and the fires look terrible, it depresses me that when everyone else is complaining about raising and snow every year, the only defining weather patterns that California has is excessive heat warnings and fires. I hate this place haha…

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  • September 8, 2017 at 4:08 pm
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    Thank you Matt for the validation. My life has been running parallel to your minus the steroids.
    I have also be feel off & irritable with no real rhyme or reason. Even though I still feel this way with no answers in sight, there is a bit of comfort in knowing I’m not crazy!! Someone out there with my disease feels what I’m feeling.
    I will keep searching for a way out of this rut. I will keep both of us in prays.
    Jackie

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  • September 10, 2017 at 1:49 am
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    Matt why do my soles itch so much? I scale my soles with a knife in the night, when I can’t sleep.Thanks for not stopping the tape on the yt Video about the Neuro Dr’s refusal for tx.
    Stay cool with white tea. Thanks, Justino

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  • September 20, 2017 at 6:34 pm
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    Matt I’m hoping this reaches you. I’m a retired Middle School Biology educator.8 years into MS.
    I wanted you to know that I appreciate your writing style, your continued empathetic approach. Also being such a young pup. Keep up the good work.
    P.S. Happy day after, “Speak like a pirate day!”
    Marcus S. Berg

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  • October 27, 2017 at 6:01 pm
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    Thank you for sharing your journey. I’ve suffered with different problems since September 2009 but was not diagnosed until September 2016. Then my concerns were given a name RELAPSE REMITTING MULTIPLE SCLEROSIS.
    It’s true no two people share the same symptoms. You speak of what I can only liken to hot flashes. I experience a never ending cold. My fingers and toes stay numb, with other body parts feeling like there sleep. YES I’m always tired and would prefer to lay down.
    I’ve been told not to so my husband and kids (5) keep me moving. ❤

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  • November 1, 2017 at 6:48 pm
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    My name is Elizabeth and my husband Frank has MS now for about 28 Years. His symptoms are so similar to yours. You are the first person that I’ve read about that has this annoying noise in your ears. My husband has the same and it drives him crazy and it’s intollerable. My question to you is have you had any success with getting rid of the ear noise? I’m desperate for relief for my husband.

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    • November 1, 2017 at 6:52 pm
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      Thank you for sharing ☮️

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