Share your experience with fatigue. Get the conversation started.
Share your experience with fatigue. Get the conversation started.
I don’t think any one could image what MS fatigue is unless they had it! My fatigue is so bad some days I don’t think I can lift my hand over my head, but I have to. I have 2 small children, whom has kept me going, and a job. I take Provigil and an ADHD medication for the fatigue and yes it gives me energy, but I feel like I am on a caffeine high and my brain is still tired. I throw up almost daily because my body is so tired and this is the way that it deals with it. My thought process is slowed and I cannot remember anything, and I get headaches. On weekends I try to take naps but they turn into 4-5 hour naps just so I can wake up and go back to sleep a few hours later. I can’t drink caffeine due to the crash I get. I have attempted several diets but they have not helped. I get told I need to exercise but I don’t have the energy to go to work and come home and do housework, play with my kids and then exercise. Please if anyone has any suggestions please help!!
Check out Cathy’s blog on “Taking Steps to Manage Your MS Fatigue,” https://multiplesclerosis.net/living-with-ms/taking-steps-to-manage-your-ms-fatigue/ We hope the suggestions listed will help. Keep us posted.
I too have very bad fatigue it gets in the way at work, not being able to concerate. And I forget things all the time. I world a very fast paste and stressful job which I love my bosses don’t seem to understand my disability and will not move me into another position so I just deal…
Dear Jamie: I am sorry that your bosses cannot understand your disability. Have you considered looking for another job which is a little slower and a little less stressful?
I know this is hard to consider. I left a wonderful job in Washington, DC which I loved, but knew early on that the fast pace and stress would do me and the MS in very quickly and I would go from Relapsing-Remitting to Primary Progressive if I kept that up.
Can you delegate any of your work to others? I know that is also hard to do because no one can do the work exactly like you.
I still work full-time but live now in a lot less stressful environment and can set my pace/work activities to my level. My bosses accepted my disability at the get go and I am so grateful!
I usually don’t get real tired until the afternoon. It doesn’t seem to matter what time I wake up I feel like I need a nap regardless.
Sometimes I could be out running errands and I will just get so physically exhausted, I think to myself ‘where is this coming from’?
I find the fatigue symptom to be the most frustrating symptom for me. One day I’ll be feeling great and then the next I would feel like I have just participated in a marathon. I also find now that I cannot cope with basic things like enjoy shopping trips, without feeling completed exhausted and needing to have a decent nap afterwards. I find that I get really tired if I’m in an environment that is filled with so much going on. I also find that during winter I am wanting to hibernate more but the opposite happens in the Summer months. I’m currently on Amantidene and Vit D once a month but have upped my dosage for the Winter.
Until this weekend, I’ve struggled trying to explain the intense fatigue. Non-MSers think, oh yea, you are tired. So, after discussing jet lag with a friend that had gone to Europe, I realized THAT is what MS fatigue is like. You’re going along thinking things are just fine, then bam, it’s like you’ve “hit a wall” and you’re done. As he described his experience with jet lag, and, my recollection of the experience years ago, it was a light bulb moment. And that is how I’ll attempt to explain it to people that think I’m just “extra tired”.
I can relate very well to the Fatigue of MS! It’s awful! It’s as if u
When trying to explain it to my Family, I try to tell them that it’s as if you have the flu but about 10 times worse. The exhaustion is so bad that usually I will sleep about 3 days pretty much straight , except when I have to go to the bathroom; I usually have NO appetite either when I get hit by the fatigue. And don’t get me started on bladder issues. That has really been a hard thing to get used to. I literally have to tell myself out loud that I have to go or I won’t go, and then it’s a real dilemma!! That in itself will make you exhausted. I just get so self conscious that my family really doesn’t believe what I’m telling them. But , compared to how I was before MS and the crazy energy I had, I now can not even do a 1/4 of what I used to do. It’s great to have others here to relate to, but this is a disease I just would not wish on anyone.
By Meagan Heidelberg Moderator
Thank you for commenting! We appreciate you being a part of our community and sharing a little bit about your journey with MS. Please feel free to share the article with your family in hopes of their understanding.
You’re not alone here, and we’re glad that you’ve found somewhere in which you can relate!
Thinking of you,
Meagan, MultipleSclerosis.net Team Member
For me extreme fatigue is the main M.S. symptom, but brain fog also plagues me.
On a “good” day I think maybe I don’t have M.S. it’s all a mistake… then…it hits me.
Recently, I seem to be spending a good part of the day laying down. I’m losing days….
I shouldn’t complain, I don’t have small children ( other than grandkidlets that come and go). I’m not obligated to get up and go to work anymore…but…. lost days.
I am trying Nuvigil. can’t say that it is really making a difference. Maybe I should take it every day, not sometimes.
Any comments on Nuvigil for me?
I was always the “go-getter”. I did it all. Took my son and his father to work and school, cooked, cleaned, made dinner all before going to work. Went on class trips with my son, baked for his class, baked for fun, went places with my family, walking or on a scooter, blind or not, verbal or not. Tired or not. You be surprised at the things I should not have been doing because certain buildings and facilities we’re not accessible! I do things now I shouldn’t do with a bad degenerative spine and the pain! The fatigue is horrible and I can ever sleep. There are days when I’m wiped out and will sleep 13-15 hours and some *might* wake me up. Then there are nights when I don’t sleep at all. I hate this.
I find that I am trying to fight the fatigue which is useless. I have learned to set daily small, small goals. Anything cognitive is pretty difficult. BUT at the end of the day if I have accomplished one small thing I give myself a pat on the back and if I have not accomplished a small thing well all is forgiven. I am 71 living in a retirement company and while I am so fatigued sometimes which makes me in a very bad fog and I see some 80 something running the track it is hard not to compare. I have decided to tell myself it is not my journey and that is okay, As long as I can say “I am doing the best that I can” I can live with this. Well, for today.
By Kim Dolce Moderator
Bones18, the way you talk yourself through your most exhausted days and seeing others be more active is so very relatable. I’m glad you are gentle with yourself on your worst days. Thank you so much for sharing your thoughts about daily life.
Thinking of you. –Kim, moderator
It has taken a great deal of therapy to get to where I am. I go to Senior’s Program run by therapist for people who are experiencing depression from countless situations but loss of independence due to aging and illness is a big part of it. I have learned a lot and have to dig deep sometimes to find my self help message. I count on this site to learn, laugh, cry and relate. knowing you understand worst days is a huge support. Thank you.
I was diagnosed around 17 years ago. I was supposed to be on one of the 1st planes into Afghanistan after 9/11, but days prior I woke up with slurred speech and severe balance problems. I first thought it was a stroke. I was grounded, went through tests, and was diagnosed with MS. Infusions of steroids helped stop the severe event.
I was blessed to be able to finish my military career and retire on my own – no medical discharge. I still work for the military in an extremely stressful job…that I love…but the toll on me is catching up. Exhaustion has been my biggest ‘enemy’.
All the descriptions I have read on this site are so accurate. Quicksand, a thief that steals the energy from muscle and bone, leaving you too tired to move, talk, and even think at times. I have used Provigil (for narcolepsy) to keep going. 1 tablet per day helped bring my body’s energy back to where it should be to keep me going. I had to tell the doc that to keep going at the pace I need to in order to do my job I now have to take 2 x 200mg tabs. He told me that is beyond the limit I am supposed to take. He said I have to come in and have a talk about what’s next treatment / life-change wise…so I have avoided going to see him for about a year. It’s gotten to the point where I have almost no choice now.
‘Fatigue’ has become best friends with ‘Brain Fog’ they hang out more and more lately, making it harder to do my job. Recently they have been joined more frequently by ‘Panic Attack’, accompanied by slurring of speech or a hard time putting words together when speaking during extremely stressful times / situations. More and more lately the situation can be what I consider much less stressful (than I am use to) but I have these problems.
Cramping, toes to thighs, sometimes fingers now, and all accompanied with that growing fatigue. I am more and more afraid I won’t be able to do my job…and its all I know and the only way I can support my family. At the same time I am blown away how these usual situations for me now cause such physical / mental wreckage…I’m worried sometimes people will think I’m weak, that the doc will say there isn’t much to it, that I just need to ‘man-up’ and press through it…so I try to do so.
…and Exhaustion is always my ever-present adversary…who is starting to get the best of me.
Sorry…haven’t told anyone this until now. Thank all of you for sharing. It helps. Nice to know I’m not alone.
By Donna Steigleder Moderator
Thanks Easy for sharing your story and thanks for your service all these years, as well. I can certainly understand your fear about the future since no one knows what lies ahead but consider this, the picture you tell yourself about going to your doctor is all negative. What if you saw a neurologist who knew a lot about MS and you were prescribed a new medication that helped those symptoms get better and suddenly you could function better? You can’t find an answer to the problem if you don’t confront it head on. I know you don’t want to confront what might be ahead but in asking for options to try. You don’t just have to “man up” and accept it; fight back and look for more options. If there are none then look at job modifications. Just keep fighting for more. You have the spirit.