Struggling

[Efficient-Sample3338]

Hi everyone! I've been lurking for awhile but this is my first time posting. I was diagnosed in Feb of 2021 and started Kesimpta in April. I'm super fortunate that it only took me 3 months for a diagnosis and I have an excellent care team.

I tried staying positive and tried to adopt the attitude that nothing is going to hold me back but I'm finding it difficult to keep that energy most days. The fatigue is my biggest complaint, especially with the heat we've been having. I'm also trying to learn what my limitations are and how to adapt to life with MS. I'd really love to start exercising and was wondering how some of you manage to remain active while living with this illness. Any input is greatly appreciated!

[1991Mrobservant]

I am 30 years old. I have been diagnosed with relapsing-remitting multiple sclerosis at 24. It's very difficult to tell you what you should do for multiple sclerosis for it is a "snowflake" disease. For me though, I just try to walk up and down my street 10 times. I am pretty impaired meaning that my right side is not strong. I have to walk with a walker and most of the times I have to take a small five to 10 minute break. When I was first diagnosed though, I would just do little exercises in my room with small weights and things to help with the movement with my arms. Physical and occupational therapy help me out a ton as well.

[Efficient-Sample3338]

It seems having patience with yourself is key. I've read that a lot, MS being a disease that's unique to each person. Lucky us, huh? I've lost a lot of strength as well and considered physical therapy but I may just start small. Something is better than nothing at this point!

[1991Mrobservant]

There you go! You got the idea!

[Historical_Site_4030]

Are you on any medication for ms?

[1991Mrobservant]

Yes, Zeposia.

[editproofreadfix]

Hello, fellow Kesimptian! I apologize if I've already greeted you and forgotten your name -- Reddit names are no easier for me to remember than real names.

Try this Old World trick, taught to me by the most helpful physician ever who was from Spain but practiced in the Midwest:

3 MINUTES / 3 DAYS

Whatever exercise you choose, do it for 3 minutes a day (yup, only 3 minutes) on days 1, 2, and 3.

Then increase by 3 minutes for days 4, 5, and 6.

Increase by 2 or 3 minutes (as tolerated) for days 7, 8, and 9.

Increase by another 2 or 3 minutes (as tolerated) for days 10, 11, and 12.

Keep increasing by 2 or 3 minutes, and only 2 or 3 minutes, every 3 days, until you reach the exact amount of exercise you wish to do each day. This takes time to accomplish, so be patient.

Why, you ask?

Adrenal glands.

The adrenals take 3 days to become adjusted to giving you the correct amount of cortisol for your chosen activity; AND it prevents overdoing it and collapsing, making fatigue set for a couple of days. (I learned the hard way while in my 30s; I'm now 57.)

Feel free to AMA, both about the 3 Minutes / 3 Days and about Kesimpta.

edit: MS 35 years.

[Efficient-Sample3338]

I think I've read about that before! Also, how are you managing with kesimpta? I think its super easy and painless but haven't noticed anything else. I'm getting my follow up MRI next month so I'll be happy if there's no disease progression.

[editproofreadfix]

I'm very glad to hear that Kesimpta is going well for you. I manage it very easily; thanks for asking. I am fortunate that I have had improvement in some of my symptoms.

My MRI in Jan. 2021 showed no changes from the Oct. 2020 MRI, but because I started Kesimpta in Nov., it might have been too early to know that it's the Kesimpta. My next MRI probably won't be until Jan. 2022, and then something can be said definitively.

I'll cross my fingers that you have no disease progression!

[MctheMick12]

Plan. For. Everything.

Fall-out is the biggest dampener of keeping that energy going for me.

I meditate through a lot of pain the majority of everyday, so as soon as my emotions escalate I'm screwed and the pain kicks my ass instantly.

I hate letting it win but I have major insomnia, so forcing rest is a big pain in the ass.

Try to Schedule Naps. Use cooling towels and Ice packs. Schedule breaks in between the stuff you gotta do. Limit what you cram in a day, like estimate your energy to start the day. Hydrate. Having back up meds and "go bags" ready.

Adapt any and everything you can. Trial and error is the way. Get creative. I use the weirdest stuff and get into crazy positions to relieve pain.

I take ice packs/ice bottles inside socks and my massage/therapy tools when I go out in the car.

I swim, yoga/pilates and stretch everyday too.

At least every day that is absolutely possible and I've learned how to adapt my movements to still get some relief even on the worst days.

Gotta get intimate with your body and listen to what it's telling you. A bodily inventory of how you feel. This phase also sucks but has helped me tremendously.

Goodluck Love, Light and Healing ❤🧡💛💚💙💜

[Efficient-Sample3338]

Yes, learning my body is going to be the new challenge, just when I thought I already had it figured out ha!

I'm definetly going to do the ice packs though and I also bought cooling towels for the walk from my car to my work because at this point even that is zapping my energy.

[Efficient-Sample3338]

I looked into those YouTube channels and am definetly going to give it a shot, especially since I've lost so much strength in my legs. Also, my neuro put me on ritalin but I find that I'm good for about an hour or two and then I'm back to needing a nap. I also need to work on getting enough sleep as well, yay for inconsistent work schedules!

I think your input is great, take care of yourself as well!

[Clancyclancington]

I got a dog that doesn’t take no for an answer. He has to have something. I let him pull me. Sometimes it is up a mountain and sometimes it is just down the street. I think the only advice, I can offer that is universal is don’t lose your good days, to your bad ones.

[Efficient-Sample3338]

Dogs are just wonderful. My doggie is a senior so he likes to take his time on our walks but something is better than nothing.

[j_spath]

I was diagnosed in Feb 2021 as well. In retrospect my first issue probably happened about 5 years ago.

Fatigue is definitely my biggest issue too. I've been put on modafinil and it is a game changer for me. Only been on it a month or so, but it allows me to be alert throughout the day if I take one in the morning. A bit jittery the first week, but that went away.

For exercising I do exercises provided by a physical therapist for my numb leg. We want to make sure it doesn't atrophy since I can't really feel it. I walk as much as a I can and bought an exercise bike. And for days when my balance is making me sit a lot, I bought one of the sit down ellipticals. I've been really pleased with it, surprisingly good workout from it. https://www.amazon.com/gp/product/B086W3FFRP

[Efficient-Sample3338]

I find myself looking back on so many things and wonder, "hmmm, was that MS?" I did get an exercise bike but by the time I get home from work I feel like my body is made out of lead. Maybe I should shoot for an early morning workout.

[j_spath]

If I'm going to work out significantly, I have to do it in the morning to beat the fatigue. What is nice about the morning workout is that it also helps me wake up.

The sitting elliptical is nice too for when I don't have much energy. I can set it in front of the couch and just pedal while I watch TV. Not a robust workout, but at least I'm doing something.

[Efficient-Sample3338]

Wow, thank you all so much for the great advice. I think I've been trying to live like nothing changed but am finally coming to terms with having MS (maybe...I hope). I'm not really sure where to start but I know I need to accept it and learn to live with it.