Extreme fatigue

[LouLou]

I am interested in hearing how others handle episodes of extreme fatigue. Since being diagnosed almost 2 years ago, I find myself at times to totally run out of gas. I work full time still and get a good night's sleep each night. This past Thursday, I was so tired driving home from work - got home and took a quick shower - laid on the bed for an hour - had a quick bite and was in bed by 6:30 p.m. I was up at my normal 4:45 a.m. and could hardly walk to the bathroom due to being so tired still. I stayed home from work on Friday and slept all day (except to get up and take meds). I was up for a few hrs. in the evening and then slept for another 12-13 hrs. Today I feel a bit better. It's like I just run on fumes some days - get a few days of rest - and get recharged again. I try to explain to my family and others how I feel, but it's hard to.

I know I need to get more exercise, but having a hard time getting back into it right now. I walk with a cane and have not fallen for quite awhile, but my balance is still off. I could sneeze and fall over if I wasn't supporting myself. I also starting taking a women's multi-vitamin and eat pretty healthy. Is this fatigue all neurological stuff? I take baclofen (10 mg 4 x day) diazapam (10 mg at night) and cymbalta (90 mg a day).

Other than the extreme fatigue that I get with these episodes, no other symptoms increase such as cramps, etc. I do wear hand braces at night to keep my fists from clenching. That's why I take the diazepam along with baclofen at night. The braces suck, but I've been wearing them for 6 months now.

LouLou

 

[ottawa girl]

Hi,

I too am very tired and really that is the main reason I am not working. I recently started taking Wellbutrin. My GP explained that this is an anti depressant, but with an energizing component (as opposed to a Paxil which has a sedating component for anxiety etc.). Since I have never suffered from either depression or ALS, it was difficult to figure out my fatigue. It's been about a month, and I find I have a bit more energy. In fact, I require fewer day time naps. I am still fatigued, but not as oppressively. My mood is the same pretty much.

When my spasms are nasty, I take neurontin, which helps but makes me a tad loopier than usual.

I was prescribed a hand splint also - getting it next week. Hope it helps to stop the curling fingers. It's damn hard getting a manicure with a tight fist! I hope I don't find it to be too cumbersome.

 

[vickim]

I have severe fatigue, my doc tor gave me mestinon, 60mg 3 times a day. It is given to patients with myesthenia gravis(sp) tohelp with fatigue and it has helped alot. I went from barly being able to wash and dry my hair, taking 3 days to clean house where it used to take me 1 to almost normal. It sometimes takes me 2 days to clean house but I am not going to fall over from fatigue. I can make it through the day without too much trouble. I also take neurontin and have very little side effects from it.

 

[LouLou]

My primary care doctor did tell me I could try Wellbutrin if the increase dosage of Cympalta did not work for the fatigue. I will make an appointment with him to discuss.

The hand braces at night do work, but I need to lay on my back with my hands by my side (like a mummy) all night. It's like sleeping with boxing gloves on! Not easy to reposition the blankets or grab my husband's nose when he's snoring!

I just want to have more energy to do things. Everything seems to be such a inconvenience lately. My husband helps me alot and I feel guilty at times, but then again I know my limits...and working full time is a big deal. I love my job and the people I work with and they are so supportive. I'm thinking about checking into working from home one day a week, or working 4 days instead of 5. We'll see.

Thanks for your replies.

LouLou

 

[Tokahfang]

I take Provigil for it.

 

[Bad Balance]

Allow yourself a lunchtime nap. We all have this same problem.

Keep the exposure to cold down and avoid other stressors. The cold will creep up on you.

- Jerry

 

[Moonwolfy]

Im with you on the fatigue. I never felt so tired before my onset. I got used to the fatigue over time by just pushing through. But some months are worse than others so then I do nap if I can. Since I just got recently diagnosed and am now on meds though I feel often like I'm even more tired. My zanaflex makes me more exhausted than ever. The issue is I have not been stabilized on a dose yet after two months. I can't speak at all without it. This med has given me ability to speak for first time in two years. However after a couple weeks on a dose I go back to stuttering then nothing so now I'm on a high dose hoping my voice don't go away. Downside is real tired all day. Hoping I eventually get used to it. Because not only can I speak but I can breathe and swallow so much better it's a miracle. Really don't want to have to choose between giving up those things because I feel like I can't stay awake