Severe Unrelenting Exhaustive Fatigue-Anything for it?

[NeuroNixed Craig]

I've been dealing with severely progressive symptoms of my disease for 11 years now and I have reached a point of chronic sleep deprivation and interruption. Chronic severe pain, spasms, and involuntary movements make me feel like I've been at the gym for 24/7.

At one point years back I tried that med that is suppose to address and relieve the severe fatigue and exhaustion. It started with an L I think. I had no impact. Even now I can drink two full pots of strong coffee with no positive impact.

Does anyone know of any type of energy Rx, drink, pill, powered mix, ANYTHING that might assist in this area? I am desperate and the situation is advancing in severity and each episode is lasting longer.

Thanks you for any assistance you can provide.

[kelm10]

more medications to choose from

The standard use to be provigil, but it has a spin off called Nuvigil, if provigil did not help then Nuvigil may not help but you never know until you try.

There is amantadine that is used for fatigue.

I believe they also use adderal for fatigue also. An adhd drug.

One of the fist things I would suggest is to get your sleep business in order. Symptom management in imparative. The restless leg, pain, all that needs to be minimized to help solve the sleeping pattern probelm. That will help with some of the daytime fatigue.

A sleep study might be imparative to help with some of this.

I myself use some suppliments to help the fatigue. B12 under the tongue, alpha lipoic acid, and l-carnitine.

The usual of eating a good healthy diet and you said you are already at the gym, because exercise helps.

Good luck.

[andeolus]

I have really bad fatigue myself. I was prescribed Provigil and that worked for a little while. I was on the highest dose but eventually it just didn't do anything for the fatigue. Eventually I talked with my neurologist and we decided to give Adderall XR a try. The difference is night and day. I wake up exhausted and still tired no matter how much sleep I get. I take an Adderall and 20 minutes later I'm awake and alert.

It's the only thing that helps get me through my day.

[knuckle]

Low Dose Naltrerxone (LDN) usually will help with your fatigue.

LDN boosts your endorphins 2-300% the day after you take it and consequently, your fatigue dissipates. Endorphins basically do three things; reduce pain, increase pleasure, and help regulate the immune system. Most people who take LDN for their MS report feeling really good because they have increased levels of endorphins.

I've been taking LDN now for about four years and ever since I started I've never had a fatigue problem, which before had been debilitating. Some of the fatigue was caused by the interferon I was taking at the time, and afterwards Novantrone and Tysabri.

To be fair, I also take 4-AP (generic Ampyra), Alpha Lipoic Acid, and a bunch of other supplements shown useful in battling MS. I take no other drugs for my MS other than LDN and 4-AP.

Here are some useful websites about LDN:

www.lowdosenaltrexone.org
www.LDNaware.org
www.LDNers.org
www.LDNscience.org
www.LDNresearchtrust.org
www.youtube.com/user/TheLDNresearchtrust

[Shashi]

Hi Craig,

I take 1,000 mg of acetyl L-carnitine and 200 mg of alpha lipoic acid daily for fatigue, and it has helped me and a lot of other folks here tremendously.

Try doing some research both here on on Google. You'll find a lot of good information, including some university studies which were done on these two anti-oxidant supplements.

I hope you get some relief from your fatigue soon.

Hugs,

Lisa

[twisterred]

Have you had a regular checkup lately?
Exhaustion can be from other things too.

With that said, it seems like you aren't getting restful sleep.
Maybe you need something for that so you can rest?

LDN helped me sleep well and also boosted my energy.
It helped me think clearer, too.

Do you set aside time for sleeping during the day?
Having a nap time may sound silly, but ti's important to give the body a chance to recover from the fatigue that plagues us.

Good question Craig.

[NeuroNixed Craig]

Allow me to provide a little better perspective for you on my unique situation.

My neurological disease is Spinocerebellar Ataxia, but the boogie man is Cerebellar Degenerative Disease. Since we are dealing with atrophy and dying of the cerebellum, medications really have little effect and the pain meds are kept at a minimal level because I will not live in a drug induced stupor.

I have had several sleep studies revealing Restless Leg Syndrome and severe sleep apnea where I stop breathing up to 48 times an hour. I use a CPAP machine consistently no matter where I travel. The sleep disturbances are a result of the brain stem stroke, combined with the above diseases are very unmanageable without giving me such strong meds I am totally knocked out.

My blood labs are all in line including no heavy metals, B-12, Vitamin D, Thyroid, all of that has been checked and are fine. I do take a strong, wide spectrum daily multivitamin twice a day.

I am doing this inquiry on my own to get any ideas for my doctor to check out. I no longer see any specialists as they all agree there is nothing more they can do for me, literally. Thus, I'm looking for any options that may work under my circumstances. The Naltrerxone (LDN), Adderall, Adderall XR, 1,000 mg of acetyl L-carnitine and 200 mg of alpha lipoic acid daily, seem to have strong potential. I will research them on the Internet and review them with my doctor as I've not tried any of them.

Thank you for all of your suggestions. I will now follow up and see what happens. As you can see, the combination of health challenges including the final prognosis, make all of this very difficult. I will keep you informed.

[DianeD]

Yes (and no)

I'm definitely with you on the sleep deprevation. Night time and sleep used to be something I related as belonging together; not so now.

I sleep when I can and I've told friends and loved one to let me do it. Might be weird, but since I do not have to be up for work, that's what I do. If you are working it's not likely you can sleep during the day though. The issue of fatigue with MS is a big one.

Ask your doc for Nuvigil or one of the afore mentioned drugs. Remember (I'm sure you know) they are all drugs, have side effects (worse for some, not for all).

I take Nuvigil. It used to make me feel wired. It helps with fatigue but it masks the fatigue and you kind of feel that. It's probably better than nothing though. I have a low dose; I might try higher as the dose I take doesn't always seem to do much. That, of course, is the sad thing about drugs! You do build up a resistance to them.

I even tried the '5 hour energy drink' twice. Nothing spectacular from that for me.

Good Luck Craig; just keep trying and let us know if you find the right thing. Diane

[onlyairfare]

Have you tried the medications for restless leg syndrome (RLS)?

There are one or two brand name drugs for RLS that are widely advertised, but also some other older generic meds can be used too.

Many times even when you effectively treat the low oxygen from sleep apnea with CPAP, the RLS still disturbs your sleep.

You may be able to get used to some of the medications that relieve your symptoms but knock you out. The sedating effect becomes tolerable after a while. I have found this true of Zanaflex (tizanadine) which is a muscle relaxer. Though I still find it mildly sedating it no longer knocks me out cold, and it does help painful muscle spasms.

Some of the strong opiates may be administered by a pump directly into the central nervous system, and one of my friends who had that (for cancer of the pancreas, which is very painful) reported good pain relief but very little nausea or sedation. Or use the slow-release tablets of morphine or oxycodone - steady pain relief, but not that immediate "high" or loopy feeling 45 minutes after you take the pill.

Another friend with terminal cancer used Chinese medicine; he lived near New York City and saw a Chinese medicine practitioner in the city. And if you are going to consider alternatives, maybe reiki healing, acupuncture, ayurvedic medicine or something similar, but outside the mainstream western medicine establishment. I have recently been working on a temp job on a southwestern Indian reservation, and there are many people here who see a traditional medicine man for healing - and it helps them.

Whatever you try, I hope you get some relief.