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Getting through the day with extreme fatigue?
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cereal3 posted:
I am newly diagnosed and have small children and a tween at home. Sometimes I can barely wash my hair let alone give them baths etc. when I am so exhausted. How in the world do you crank out the bare minimum when some things just have to be done? Also, I heard of someone who was prescribed adarall (sp?) usually an adhd drug, and it improved her fatigue enough to let her work again. Anyone have any success with this? Thanks for the tips on a broken record I'm sure ; )
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mmthlvr responded:
Hi cereal3,

Provigil works good for me. My nurse has MS and she recommended it. It's not a stimulant so you don't feel shakey.
When were you diag? Are you on any of the CRAB drugs?

Hugs
Tammy P.S. my first response disappeared, I hope it doesn't show twice:)
 
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cereal3 replied to mmthlvr's response:
Thank you Tammy, I was just diagnosed at Thanksgiving and I opted to wait to start any treatment until after the new year because frankly I'm intimidated by side effects and mixing new meds with the ones I'm already on. I dread being more out of commission than I already am ; ). I guess that is what a good dr. is for though. Did the provigil give you many side effects? Thank you again, Molly
 
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mmthlvr replied to cereal3's response:
Hi Molly,
I had no side effects with the Provigil at all. I'm on quite a few meds, Vicodin, Provigil, Flexerill, Copaxone, Estrace, Lopid & soon to be on Zanaflex. I have had no problems with these meds at all. Copaxone has very few side effects compared to the other CRAB drugs & is one of the reasons I chose it.

Copaxone is a daily injection but it's not to bad if you use the autoinject. I do get a lump/redness but I've been on it since June & it seems to be getting less & less of a problem.

Please keep me posted and feel free to ask any question you may have. The people on this site help me a lot.
One more question, did they diag you as Relapsing Remitting MS?
Hugs
Tammy
 
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amyr_74 responded:
I've had MS for going on 10 years and I KNOOOOOWWWW what you mean....MIND-NUMBING fatigue....I don't believe people can understand it at all unless they have lived it. It's more than just tired. It's being able to fall asleep on a concrete floor in 3 seconds. Feeling like your entire body is lead. Staring into space goggle-eyed with your mouth hanging open. Yeah.

SO! Here's what I've figured out: yes, Provigil is THE premium drug you NEEEEED to be on, right NOW. Seriously, it is AWESOME.....none of the shakiness side effects (I've only ever had dry mouth, but it goes away). It just makes you....AWAKE. Not crazy-awake, just regular-awake.

But, sadly, you can develop a tolerance, as I have. So be cautious about that. Nuvigil just came out. In my opinion (having tried both and been on Provigil for YEEEAARRSSS), Provigil is much better. I believe I read a generic will finally be available this spring.

I also take Adderall, the ADHD drug, which is a stimulant, containing amphetamine. I had to use it finally as a supplement when I started to grow tolerance to Provigil. Great thing about Adderall: COMPLETE appetite suppressant. Not that I"ve lost any weight. But still. BUT: this one will definitely get you jittery....it gives me racing heart, racing thoughts, heart palpitations, the works. But currently I HAVE to take it to do my job, which, I desperately need. Otherwise: I wouldn't recommend that one.

Good luck!
 
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gypsyg22 replied to amyr_74's response:
For me the fatigue is the worst part of having MS and I also have to work (need medical insurance). Provigil did nothing for me so I'm Adderall. Instead of taking 20mg at once I take 10mg when I wake up and another 10mg about 9:30AM. This reduces what ever jitters (they have only been minimal) I might get and allows me to get through the work day. Unfortunatley it's done nothing to suppress my appetite. I suspect I have ADD which may be why I don't feel the full effect.

Good Luck finding what works for you!
 
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rosecl responded:
I am using Provigal, L-Carnitine, and D-Ribose. My doctor recommended the Provival and L-Carnitine - niether of which have had any side effects. I heard about D-Ribose on Dr. Oz and it hasn't had any side effects. All three seem to help. If the doctor hasn't checked your Vit. D level, get it checked. A lot of us with MS have a low level. Some people seem to have more energy when their taking Vit. D and their level is up. I have been seen the doctors at UCSF and they have been great. I hope this helps.
Rose
 
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Smencils replied to cereal3's response:
I have been diagnosed for a little over a year and I am taking Tysabri IV Treatments. I know I have a chance of getting the JC virus, but my doctor is doing blood work all the time to watch any changes to my liver. He says I have a 1 in 12,000 chance of getting the virus, and a bigger chance I will have a wreck and get killed. The treatments don't make me feel bad at all. I am now in remission since the treatments.
 
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maryd37 replied to cereal3's response:
Hi Cereal3,

I was diagnosed with relapsing remitting MS in 1997. Since then I started with Avenox (sp?) that was a weekly injection I had flu like symptoms that did not subside. On the other hand I know people that are on Avenox and it works great for them it depends on the person. Currently I'm on Copaxone it's a daily injection I've never been better. It's almost as if my MS is in remission; I work out 2-3-days a week I take vitamin D (very important) and your diet is very important as well. I feel that the medication saved me because when I was diagnosed I was very sick. Just thought I would share.
Thanks,
maryd37
 
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mmthlvr replied to rosecl's response:
Hi Rose,

I also went to UCSF, I saw DR. Cree. They are so friendly but it got to hard for me to get over there. I live in the Mammoth lakes/Bishop area on the other side of the Sierras. If it snowed I couldn't get over the passes & the drive turned into 9hrs one way.

Do you still go there? How long ago were you dx?
Hugs,
Tammy
 
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joat5500 responded:
I was diagnosed 13 years ago. The fatigue is real and many times the only saving grace for me is to take Provigil. It was not originally covered by my health insurance company and is very expensive (about $20.00 a pill) HOWEVER, MS is now a recognized symptom for the medication and if you have extreme fatigue (at least in my case) they covered it under the perscription drug plan. A life saver!
 
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regslady responded:
oh, wow! I thought I'd suddenly become the laziest person on earth and couldn't figure out this beyond-exhaustion. I'm so glad I stumbled upon your post, cereal. I'm going to have to talk to my neurologist about all the suggestions here when I see him next month.
 
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joeinbham responded:
I was diagnosed a little over 2 years ago. It spread up my legs and finally stopped at the bottom of my ribcage. Went from 1 cane to 2, then crutches and quickly a walker and then rapidly into a wheelchair. Took me a long time just to get my pain and spasticity meds worked out, now I've been trying to work on the fatigue so that I can have some semblance of a life beyond eating, bathing, copaxone injections and pills. I did smoke a little marijuana daily for about nine months to help with the pain, and as it had back in college, it had a stimulant effect on me(unlike everyone else I knew that it made lazy) which worked out great for the fatigue. It then suddenly started making me sick and overheated, tearfully anxious and tingly everywhere(the last sensation I care to feel). It also started to sensitize me to every pain I had, so I stopped immediately. My pain increased somewhat but I hadn't been aware that it had been helping with my spasms until a few weeks later when it cleared my system and my muscle relaxers had to be increased to compensate. My GP had me try 10 mg of adderall, but it made me jittery and gave me a hollow feeling in the pit of my gut that I couldn't tolerate. My GP suddenly passed away and the two new docs I've seen since are shocked that my neurologist isn't the one working with me on the meds I need. All she does is a body check, send me for MRI's and prescribe copaxone(even that I was left unguided to choose myself). So, two things, who should I see about trying provigil and do I need to find a new neurologist?

I know that some of this may be for another discussion, but I'm new to this and want to find out what other peoples neurologists do for them, cause mine "Is too specialized". I even had to learn about provigil on my own cause a GP is unprepared for the issues I face.

Thanks for any feedback you can give me!
 
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LastoftheZucchiniFlowers responded:
I have been on Adderall (on the recommendation of my neurologist) for four years and I could NOT have managed without it. In the early days I could not get over the ENERGY and improved vitality but eventually this evened out to a normal sleep/wake state (more like what I'd been like prior to the MS diagnosis). In my case I think I'd been suffering from MS for at least ten years prior to being diagnosed. Anyway - go for the Adderall (I'm on the long acting formulation of 20mg once daily in the AM - and by bedtime (late for me, around 11pm) I'm READY for bed. With the children and life of a young mom like you - don't hesitate to ask for help. The use of adderall in MS is still off label, but so what? What helps us (as long as it doesn't HURT us more), is what we should have! Kids need their mommies to have some 'get up and go' and Adderall XR provides this. One caveat: watch out for some initial agitation. Be aware that IF you find yourself yelling and screaming for little things, it's likely the drug and not you. Watch for this and keep your cool. At least you'll be awake and not dragging yourself through the day. The one ABSOLUTE contraindication is any sort of cardiac disease and/or very uncontrolled hypertension.
 
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MOLALW replied to joeinbham's response:
OMG!! I thought I was the only one with this problem. My neurologists said you have MS and it is basically a nusianse(sp?) and gave me Avonex and sent me on my way. (left out all the test and MRI's) Since, the spinal tap my hips (joints) have been hurting, and I still have the tingiling in my arm and legs. I just sent my doctor an email about the pain and he said I need to talk to my REGULAR DOCTOR?? So, I am pretty much in the same boat with you so dont feel bad. I am learning everything from the nice people in the community and the internet. I do not no what to do since I have Kaiser and I am not sure if I can change drs or not. He pretty much said all my symtoms (sp?) are not MS . So, I am now frustrated and I guess I need to talk to my GP. Good Luck.
MOLAW


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