Wth is happening

Hi everyone so today is my 1st day on here .. I have RRMS & for the past 8 days my fatigue is so bad. I take modafilin 100 mg 2 times a day & 2000 units of vitamin D as well as a high protein diet . I can't get my ass out of bed I'm so exhausted , I'm not sleeping well at night & I don't nap through the day . I'm feeling over whelmed . A week ago I experienced my first ms hug & it was the worst experience . Does anyone have any advice on how to get through this ? I appreciate all the help I can get .

22 Replies

  • Chevy_mama, I've been on amantadine, Provigil and am now taking Ritalin for fatigue. The amantadine worked a couple of years, then stopped. Provigil made my mind race and I couldn't sleep while on it. I take 20mg of Ritalin in the morning and can take another 10mg in the afternoon. It doesn't take away the fatigue (which has become so overwhelming), it just helps me push through it and accomplish a few things in the morning. I hope your doctor is able to help you. I know how frustrating and demoralizing the fatigue can be. 💕

  • The modafiln usually works great . But nothing is working .

  • Chevy_mama

    I take the isomer of modafanil, amodafanil or Nuvagil 150mg. It's supposedly a bit better than modafanil, fewer side effects, and now comes in generic (just don't get the generic made by Milan = crappy).

    I think over time we become resistant to these meds but it sounds more like you may be in a relapse or have something else going on...infection or some Things?

  • Hello and welcome. Only thing I can tell you in my experience is to take your meds be patient. The HUG will pass. Good luck.

  • The hug feels like I'm dying .. can't breathe right .. worst acid reflux . Thought I was having a heart attack .. thx for the kind words

  • I totally relate to this, I am exhausted and can't sleep at night as well, it makes one feel a bit crazy.....

  • I feel you on this Chevy-mama! Unfortunately, its the punches we roll with, due to MS! It's a monster!!

  • There are other drugs to try for the fatigue Chevy_mama , ask your doctor about it. Sorry, I think almost everyone on here has fatigue and it is a symptom that others least understand.

  • Fatigue and the HUG. worst symptoms i have too. Physical Therapy actually has helped me build up my core muscles and makes the hug easier to deal with. My HUGs can last a month or more. But PT has them only lasting a few weeks. Mine feel like someone has stabbed me with knives and the knives r still stuck in me. Plus i have asthma so i understand the not breathing part.

    I also take Nuvigil and Adderal for the fatigue but only in the morning otherwise i have insomnia. For sleeping i take a laundry list of meds. Ambien, of course, muscle relaxers, Klonopin etc but i recently started adding benadryl cuz that never fails to make me fall asleep.

    Good luck and hope some of this helps! Also, welcome to r little family here. 💜

  • Hi thx for your message .. yes there are nights that I can't sleep . I've gone 3 days of not sleeping .. but I feel exhausted . The modafilin works great for my fatigue but this hug won't go away . Feels like I've been in a knife fight & someone's standing on my chest

  • Have u asked ur doctor abot Baclofen? That was a God send to me for my HUGs. Also, accupuncture helps but insurance doesnt pay for it. They usually have TENs therapy at the same office. Expensive but wen the pain gets that bad - soooo worth it

  • Oh I'll check it out thx

  • I take sandstone and modafinil for fatigue. Didn't realize how much the modafinil helped til I ran out. Took 5 days for drug store to get it and I was totally wiped out the whole time. Picked it up Monday and was back on my feet. But didn't sleep a wink Monday night. Take doxepin and restoril for sleep but they are a waste of time and money. I sleep 2 to 4 He's a night on good nights. Been lucky and haven't experienced hugs yet. Blessings. How you get better soon.


  • Modafinil that is. I hate auto correct. Lol

  • @Doubled51 Wondering if your doctor told you about not taking Modafinil after noontime? She told me it would interfere with my sleep. FYI in case you don't know. 😊

  • Yes I don't take it after 1130 am & ive been on it for 5 years

  • But thanks 🤗

  • I only take a morning dose but my sleep issues go way back before modafinil. But it sure doesn't help sleep. My. Ms Dr just took over my sleep Dr job last month. Have to take him my cpap sd card next visit. My sleep specialist was good for nothing anyway so that's one Dr down I don't have to drive for. Another one bites the dust. Sleep Dr and pain management Dr are history. Replacing with local Dr's.

  • @Doubled51

    Gosh. I'm sorry to hear it's been such an ordeal! I figured you probably knew about not talking Modafinil after noontime but, since you were dx recently, I thought it would be better to bring it up, just in case.

    Not being able to sleep has got to be horrible. Having useless docs that waste your time and energy (to say nothing of the ones who make you worse), is so frustrating. I hope your MS doc and the local docs you mentioned can get to the bottom of it! God bless.

  • And amantadine not sandstone. I've got to start proof reading this stuff. Lol.


  • Well, I sure hope some energy returns.. Lordy, it is tough and only the MS folks understand. I too started taking modafinil 100mg twice daily in April. Dr said I could take a little more if I needed it, so I take an extra half about 10:30am and at 3:15pm. It helps with the alertness. Also take Gabapentin, 300mg. Started with 3 a day and have worked up to 8 a day. My gym is a half block away and I don't have the energy to walk over there, much less think about lifting a weight or taking a swim..

  • We are all so different. For me a daily nap, it started out for 20 minutes and now is up to 40 minutes, really seems to help. I'm better in the morning. I have that spurt of energy after my nap too.

    Give yourself a break. This is all so variable and changes not only every day but sometimes every hour of every day. Are you on a disease modifying drug? To sleep I take 5mg Ambian, that works, body and brain calm down. Also try YOGA. I am now in chair Yoga with a on wonderful lady who is a yoga therapist. It's worth a try.

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