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A MyMSTeam Member asked a question 💭
New Jersey City, NJ

Have MS 22 yrs now and up until a couple months ago I was doing pretty good, but lately the fatigue has been so bad that sometimes I can barely lift my arms or legs.
I think maybe some of the people around me don’t really understand and think I’m exaggerating. Any advice?

September 8, 2023
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A MyMSTeam Member

There are 7 different types of fatigue. I have all 7. I spend more time laying around than I do having a life. Slowly I am learning more and more. I take notes. I look stuff up then I look that up. I keep a journal and use it to keep a spreadsheet. I am finally figuring out what works for me and what doesn’t. Eating berries every day does work for me. None of the medications mentioned in the comments have helped me. Wellbutrin actually does help. Not enough that I can leave the house and go somewhere without hurting for days. Doing normal things for 10 minutes and then resting for an hour helps. Dressing in layers and adding and subtracting before I change from one temperature to the other helps. We are all different. We all react differently. People often tell me oh you just need more protein. Maybe that works for them. For me in most cases it starts the ms hug. The best thing you can do is be your own advocate. Start with the comments you got here. Look up those medications. See if they conflict with other things you take. You know yourself. Pay attention. Did eating that oatmeal help, make it worse or did it stay the same? Get regular checkups. Sometimes it’s not MS. Thyroid issues zap energy. Being iron anemic can really do a number on you. As for the people who say you don’t look sick just smile BIG and think to yourself and you don’t look stupid. Good luck.

September 11, 2023
A MyMSTeam Member

I use a wheel chair and get out of bed 2x a day with the help of an aide

Lately I started doing pushups on the arms of the chair pushing up to a standing position and down to seated

My upper body is getting much stronger

I am lifting my own body weight - up to 15 times.

November 5, 2023
A MyMSTeam Member

My story is almost the same. I have recently signed up for a trial at Johns Hopkins to see how Ketamine affects MS fatigue. I am a little nervous because I don’t know how it will make me feel, but I’m willing to try anything!

October 17, 2023
A MyMSTeam Member

My advice about what other people think- is don't let it get you down! Most of us with MS look perfectly fine . So people like to judge on outward appearances. So try not to let it bother you. We MS ers understand!! We are one big family!!

October 16, 2023
A MyMSTeam Member

Thank you so much for your advice. Everything you say makes total sense. I am trying to work through things and putting these things into action will make a big difference I’m sure🧡

September 28, 2023

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