It's a very debilitating form of fatigue, and I have it. It's so severe that just getting out of bed is exhausting. I'm just wondering how many others also have this. My neurologist told me only about 8% of MS patients suffer from lassitude. If you do have lassitude how do you deal with it?
Your doc is full of it! At this point, the term most often used for MS lassitude is fatigue. It is estimated that 75-95% of MSer's suffer with this.
https://my.clevelandclinic.org/health/diseases/...
https://www.msif.org/about-ms/symptoms-of-ms/fa...
https://www.msfocusmagazine.org/Magazine/Magazi...
https://multiplesclerosisnewstoday.com/2017/06/...
Personally, if my neuro made an off-handed remark like yours did, sloughing off my concern and issue, I would be looking for a new one!
I have it. It's frustrating. I've tried a few medications. The last one was Modafinil, but it caused tachycardia for me and I had to stop. I haven't pushed for a replacement. I'm trying to accept that I have to nap every 3 hours or so for about 30 minutes to an hour - and sometimes I just have to deal with the fact that no matter how much I may want to do stuff it's just just going to happen.
I only sleep a maximum of 3 hours straight at night then I'm up for a bit (30 minutes - 2 hours never really can tell.) My number 1 cause of night time waking is spasticity in legs and neck or arms --- which ever muscle group decides that 2-4 AM is pain party time no matter what we try. Then I sleep another 2-3 hours after my family leaves for work and school in the morning. It's becoming just the way I have to live.
Sleep won't get resolved until I get into seer the Rehabilitation Physio Therapist to determine which spasticity treatments I am a candidate for. Fatigue won't get managed appropriately until the spasticity part gets removed from the poor sleep cycle. So I don't know how much is truly MS lassitude and how much is this crappy spasticity merry-go-round I'm on. I'm now completely ready for the Baclofen pump now that I understand how poorly the body metabolizes the oral medication.
Just wanted you to know that you are not alone dealing with crushing fatigue.
Agreed!
Your post resonates with me. I don’t feel the modafinil helps much either for the fatigue. I’m having PVC’s from the acthar they put me on since I don’t react to steroids well. Was on skelaxin for spasms worked beautifully, after 2 weeks had an anaphylactic reaction. Switched me to baclofan and still having spasms and have to take Zofran around the clock for nausea. Can’t catch a break. Thought about a baclofan pump let me know if you get and if it works!
I have been taking LDN since 2005 and very fortunate I do not have any fatigue issues. Might be something to look into