MS FATIGUE!!!!!

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Cliff61583
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/12/2012 2:48 PM (GMT -6)   
So I've had MS now for 4+ years with relatively nothing to complain about. Mild numbness and tingling. I was an IDIOT and stopped taking my copaxone and had a really bad relapse this past January 2012. I'm better now and it's pretty much all gone. DEFINITELY faithfully back on copaxone. HOWEVER, I now have this CRAZY fatigue where, I wake up after a restful sleep and I'm sleepy within 15 minutes. It doesn't really stop me from doing anything. I can still go through my day but with burning sleep eyes and a cloudy fog. I'm 28 male and have a 2 year old son I watch all day and bartend 3-4 nights a week. My doc sent me for lots of blood work 10 weeks ago and everything was fine. He's saying it's definitely MS and gave me NuVigil. Has anyone had this? Tried it? THIS FATIGUE SUCKS!!! Doesn anyone have this sleepy crazy tired ms fatigue?

nikki1980
Regular Member


Date Joined Jan 2012
Total Posts : 38
   Posted 4/12/2012 6:53 PM (GMT -6)   
Oh Yeah. The fatigue is the worst part for me. I am 32, female, and I just got diagnosed 1/4/12. I started the copaxone 2 months ago. I have a four year old son to take care of daily (until his Daddy gets home) and some days I'm just barely getting by. My fatigue may be a little different from what you're describing, though, because I just feel zapped, no energy whatsoever. But when I lay down to try to take a nap I can't actually sleep. And I feel decent when I first get up in the morning, but by 1pm I'm beat. It does suck, could always be worse I guess. I haven't tried the NuVigil but I had a lady with MS tell me the other day it really helped her so I'm gonna ask the neuro about it when I see her in 2 weeks.

Cliff61583
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/12/2012 10:30 PM (GMT -6)   
Hey nikki!!, I think I was a little bit too confident in my post. I'm JUST LIKE YOU, I'm okay in the morning like you for like 30 minutes, then i'm beat up... I think it's more of a "suck it up" mentality for me. The worst is when I have to bartend at my crazy busy bar and then get home and feel like a corpse. I've never had this before. It's all new to me. Even after four years. Maybe i'm just a wuss. I dunno. I hope it gets better for us both.

nikki1980
Regular Member


Date Joined Jan 2012
Total Posts : 38
   Posted 4/13/2012 6:58 AM (GMT -6)   
Cliff, you're definitely no wuss. Taking care of a 2yr old and bar tending would wipe anyone out. Makes me tired to even think about getting a job. I guess taking care of my son is, but I think if I actually tried to get employed somewhere I would let my boss down. Just don't have any motivation. And I definitely couldn't be a bartender or waitress due to my shaky left hand. But I hope it gets better for us both, too.

Singingsupernurse
Regular Member


Date Joined May 2012
Total Posts : 118
   Posted 11/22/2012 12:27 AM (GMT -6)   
Best of luck you guys. No little kids at home but I've had this since 1999 and still trying to work as a RN Fatigue is the worst!
Those that do not learn from history are doomed to repeat it

Keckaroo
New Member


Date Joined Nov 2012
Total Posts : 8
   Posted 11/24/2012 10:34 PM (GMT -6)   
Yeah, the fatigue is annoying! I've had MS for almost 12 years now. That was a key sign for me in the beginning, before diagnosis. I would work a 6-8 hr day and come strait home and sleep. This didn't work too well with a 1 yr old at the time. Since, I force myself daily to push through, take otc energy pills, and my neuro has had me on provigil, but I have heard great things about nuvigil. I drink coffee too, seems to take more and more as time progresses. Hopefully this is a temporary thing for you :) Best of luck!

KIM9
New Member


Date Joined Jan 2013
Total Posts : 3
   Posted 1/31/2013 10:44 AM (GMT -6)   
hey all....35 years old and cant work because Im too sleepy? what!!? Its crazy. its like someone hung weights on my ear lobes. I wake up and usually last about 30-45 minutes. that is it!!! I have not worked since July for this very reason...I would fall asleep at desk, in bathroom, car...even once standing in my hallway..no joke. I just started Ritalin 2 weeks ago. I only take it on days I must do something...otherwise...I sleep. Its horrible. I push through the pain, leg contractions, tremors, seizures, but I cant push through this, it feels like Ive been drugged. Definitely worse symptom.

jack73572
New Member


Date Joined Feb 2013
Total Posts : 11
   Posted 2/6/2013 7:38 AM (GMT -6)   
I was diagnosed in '99. I had bouts of unreal fatigue and exhaustion, but mostly it was a feeling of being exhausted by noon or 1 o'clock. I inadvertently discovered my answer to be Concerta. It's and ADHD drug I believe, and I originally tried it as a way to focus more clearly, but I found that I no longer needed to take naps. I take two 36mg tabs in the morning and it has simply given me my life back. also, there is no nervous feeling like I had with Provigil. There is now a generic version of Concerta as well. Has anyone else had good results with Concerta. For the last 4 or 5 years I have gone to work at 5am, worked till 2 or 3 or even later, and then gone to bed around 9 or 10....no problem. once or twice a month I might take a nap....but that might have more to do with being 53 than it does with MS.

Essay
New Member


Date Joined Nov 2012
Total Posts : 13
   Posted 2/6/2013 3:39 PM (GMT -6)   
I take nuvigil. So far it helps . Some days not so much. Will take it as long as I can pay for it. Very expensive.

MattyG
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/16/2013 11:02 PM (GMT -6)   
Diet helps me big-time. When I eat green smoothies and other super foods, I function rather well. Scarf a greasy burger along with fries and I am cut down. I think you get the drill mg

Lancemp
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/21/2013 9:49 PM (GMT -6)   
Hello Everyone, I am a new member>this is my very 1st post! Whew! yes this constant, relentess, vicious, chronic>fatigue. I never have any will nor desire to do anything-period. VERY! unlike my nature as a person. I was in denial for a few years, no-one knew what? was wrong with me? Well, yep PPMS at its worst, I went from a healthy 215lb bodybuilder [NO steriods] to a wasted away 150lb male that cannot walk with out the help of a cane. So now after TRYING to accept this ruthless disease>I have decided that nutrition MIGHT be the answer? for me, along with a moderate exercise program [I havn't worked out for 2-3 years] Because now I know the truth it's up to me-to do something? anything? to combat this evil disease. Good Luck to ALL!! Lance

lauramomof4
New Member


Date Joined Apr 2013
Total Posts : 6
   Posted 4/26/2013 12:04 PM (GMT -6)   
Fatigue is a problem for me too, usually VERY debilitating. Diet does help me but it's subtle and something I have to stay very consistent with (if I get off the wagon I start feeling like crap in general... when I eat healthy things I have more good days than bad days noticeably). I have tried amantadine, Provigil (double the normal dosage and weigh 120 pounds), and Nuvigil. After 10 years I was feeling like nothing could help me and very concerned about not being able to work any more, and have 3 kids still at home. That also contributed to very bad depression. What I decided to give a try this last month is Adderall, and that has made a HUGE difference. Most days I feel somewhere between close to normal and every now and then I have a day where I feel totally normal. It has been WONDERFUL. It is very inexpensive too. My heart goes out to you and I hope you can find some things that help! Keep trying and asking until you do find what works and don't lose hope. It is a very tough thing to deal with.

HADES
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/1/2013 12:07 PM (GMT -6)   
I've been using adderall for about a decade. My fatigue is such an issue for me I use 60mg of the XL every day. I have used 90mg on occasion but found if the 60 didn't work nothing will. I questioned my nero about the drug and dosage as I know it is a quite powerful drug. He simply stated it was a quality of life decision, use it or stay asleep the rest of my life (or until something more promising is introduced). Provigil, Nuvigil nothing else worked. Adderall has givin me much of my life back but my mouth and lips are constantly dry but it is better than staying in bed or living life as a zombie.
My daily routine is waking at 5:15 take 2x 30mg Adderall XL go back to sleep and try to wake at 7, 7:30. My fatigue is very bad but Adderall has really helped

gkuhs
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/9/2013 6:08 PM (GMT -6)   
I am A new member i was diagnosed in 2006 when i woke up one morning with double vision about 6 months later they discovered i had m.s the fatigue part is the hardest for me because it seems i am tired a lot but I have to push my self to get through my day because my job depends on me being awake and alert. I drive charter bus for a living and also i drive school bus. a lot of times i will get home from work and pass out on my couch. My girl friend takes good care of me though if she sees that i am tired and hurting she makes me rest. I am not currently on any thing for fatigue but I have just started copaxone. before i was on avonex and hated it it made so sick i would have to count my self out for at least a day

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 5/9/2013 6:16 PM (GMT -6)   
about time you joined you twit. Always will take care of you too honey.
Welcome to Healing Well, and you can read and post as much (within the rules) as your heart is content

(only I have the privilege of calling him honey you guys LOL)
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ And Doctor's Worse Nightmare DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor

Millsdesk
New Member


Date Joined Feb 2014
Total Posts : 1
   Posted 2/22/2014 11:26 PM (GMT -6)   
I am a 25 year old male and I was diagnosed with MS Spring 2013. I am currently taking Tecfidera and have moderate Relapsing Remitting MS. I have incorporated two aspects to my life that have greatly reduced my fatigue. First, I run 3.5 miles at 5 am, at least five days a week. This has had a significant impact on the mid-day and evening sleepiness because I have so much more energy. Feeling like a human and not a zombie all day makes waking up and exercising that early totally worth it. The second life change I have made is to become vegan, strictly limiting my daily Saturated Fat intake to no more than 15 grams. This has left me feeling healthier instead of lethargic; once again a sacrifice that is more than worth it. I highly recommend a plant-based diet to everyone, not just people with MS. There is research that supports vegan-type diets as the best lifestyle to combat MS. Here are a few articles with more details:

http://ms.about.com/od/alternativemedicine/a/Basic-Rules-Of-The-Swank-Diet-For-Multiple-Sclerosis.htm

http://www.drmcdougall.com/health/education/health-science/stars/stars-written/donna-mcfarland/

http://www.huffingtonpost.com/sandy-henson-corso/vegan_b_1176452.html

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1226
   Posted 2/23/2014 8:04 PM (GMT -6)   
im 63 and have had the fatigue since 1977. i never have energy, but when i get up and do things i dont feel bad. things got really tough for me around 2006. so i retired and changed to a very healthy life style. still i was going down hill. in 2010 i started ampyra, and had a great reaction to it. it helps fatigue so much i dont feel sleepy when i take my tizanadine and baclafen. it also helps with heat, and spasticity. if i forget to take it, i twist up like a pretzel and cant walk.
barry

stateofblink
New Member


Date Joined Mar 2014
Total Posts : 5
   Posted 3/6/2014 6:16 AM (GMT -6)   
You poor people! I have been diagnosed as having MS for nearly 3 years. In New Zealand I had to have 3 attacks before I qualified for any medication. 3 in 6 months gave me copaxone, which after 3 months I had a major allergic reaction to. Switched to avonex, which made me feel worse than I have ever felt. So I tried low dose naltrexone with avonex. Research found avonex suppressed the immune system, naltrexone boosted it, so they were essentially cancelling each other out. So I decided to be brave. I cut avonex, no more injections! I take 4.5mg Of naltrexone a night. My fatigue is less than 3 quarters of what it used to be. I feel like I have my life back. Please Google low dose naltrexone and read why it's not always offered to you when it should be. Please. There's more testimonials even better than mine. Reading this thread makes me want to cry. I hate MS.
Btw I have been taking just naltrexone for 4 months. No relapses. Seriously if I have an attack I will go back to probably interferon, but I will not regret feeling this good for this long.

Post Edited (stateofblink) : 3/6/2014 6:13:51 AM (GMT-7)


maisy2003
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/10/2014 10:35 PM (GMT -6)   
I feel the fatigue in a BIG way. I have had MS for 16 years. I am on Copaxone 40 mg, 3 times a week, and Nuvigil.
My Dr. says I have a new brain lesion, and should try another drug therapy. Nothing is working. I feel okay, just tired ALL THE TIME. I nap in the morning 1 hour after I get up. I work evenings. I try to do yard work, which is my favorite thing, but I am so tired. My Dr. sent me to a Psychiatrist for the depression of MS, and he put me on Lexapro. It is doing nothing.
I hate the fatigue!!! I can't make it through the day, without feeling exausted.
I enjoy reading all these post, it gives me some info on what others are going through.


Maisy2003

bethr
New Member


Date Joined Dec 2014
Total Posts : 8
   Posted 11/21/2015 9:00 PM (GMT -6)   
Yes. I had it this morning. I also have that really annoying brain fog.....

Today, I was taking a tennis drill outside, and I was feeling pretty good, until about 1/2 hour into the lesson. Then, all of a sudden, I felt like I was hit be a ton of bricks. I wanted to lay down right there, and go to sleep. I felt overwhelming fatigue, a slight headache, and a little lightheaded.

I've had this feeling many times, before. It's extremely debilitating. Right now, I have the chills, and a little fatigue, but I'm often sweating and hot.

Regulating my body temperature is another major issue for me.

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 389
   Posted 11/23/2015 3:44 PM (GMT -6)   
Hi there and good afternoon. I have not posted here for a few years, at least it seems that long. Fatigue. Yes in deed, when it hits, it is like strapping big blocks to your feet.

Remember heat is not your friend. Heat will bring on symptoms, and will also bring on the fatigue. As crazy as this is going to sound, stay active. Do what you can. It will reduce the fatigue, and it's severity. And stay cool!

Have a great day,
Gary

PS - hello Gretchen

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 12/2/2015 6:45 PM (GMT -6)   
Hi Gary!!! It's nice to see you here again! I hope you are doing well.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 12/2/2015 6:46 PM (GMT -6)   
Hi Gary!!! It's nice to see you here again! I hope you are doing well.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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