how do you manage fatigue

[scouse]

Hi
I was diagnosed with MND in April 2010 up untill a few weeks ago I was quite well with slurred speech hand weakness being my only symptoms,however in the last month I have had pretty bad fatigue ( by readig these post I will get worse)I also now have some emotional liability which is getting worse. with the fatigue my speech is worse I am not to sure wether to ask the DR for medication for the fatigue as I try not to take medication if I can help it exept for vitimins I was wondering if I got medication if it works? also, if it could progress the MND faster as mine is:?: supposed to be slow ? I have a view rightly or wrongly that your body tells you what you should do and if fatigue is telling you to rest that is what you need to do.
Any suggestions experiences etc I would appreciate
thank you
take care
Scouse

 

[sadiemae]

My husband has been taking Modafinil for fatigue, and it has helped.

 

[abbas child]

Scouse, I'm sorry you have such bad fatigue. I personally know of nothing in the way of medicine that helps--someone else may. I do know that fatigue needs to be monitored, as it makes symptoms worse. I do rest whenever fatigue hits, unless I'm with visitors. I have noticed that a future problem will first present with fatigue, then disappear until later. That, to my thinking, means that allowing fatigue to continue would likely speed up the disease. I find that if I lie down and rest I do regain energy. Ahh, I see you've just gotten a 'medical' answer to check out.

 

[Tokahfang]

My husband has been taking Modafinil for fatigue, and it has helped.

I do too, and it is a world of difference. It is $100 copay for me, but my family and friends were so impressed by how much more Tokah they get with it, they chip in to pay for it.

 

[joelc]

I manage it by getting more sleep. The way I view it is your body is fighting ALS so hard it runs out of energy so the only way to combat that is to replenish your body by getting more sleep.
If you use supplements to gain energy that is actually detrimental and speeds progression. Just my thoughts.

 

[Zaphoon]

Stress seems to be a multiplier of fatigue for me. If I can reduce the stress, fatigue is lessened.

I also drink a lot of coffee (not good idea to feed fascics!).

 

[GlenBrittle]

Sleep , Sleep

Your eyes are getting heavy

Sleep

I ignored my naps for two days (working) and the third day I had vertigo. Which seemed to coincide with some pretty low blood pressure. I have returned to my afternoon naps, and the vertigo went away.

Listen to your body

Glen

 

[handinhand]

I feel extra activities make me more fatigued. Clinic ,more fatigued, trip, more fatigued. I try and do things in the morning. That is when I have the most energy. Take a rest every afternoon... Keep hydrated and if I don't take my formula. I am fatigued....Linda

 

[irismarie]

go with your body and go back to bed. Just come out of hospital and after two days just resting in bed feel so much better. The ALS teams here in FRrance stress all the time that you must NOT push yourself in anyway, that you must take everything easily and slowly and use every aid and bit of help you can to make life EASY. Go with the flow. Rest. Do not fight it.

 

[rose]

Irismarie,

I'm glad you were able to get some much needed rest. I remember you'd said you were having problems with insomnia.

Even though you've had your ups and downs with the healthcare system, it sounds like you're having much better response from them nowadays.

However, a couple of things continue to nag at me, I know I've remarked about some of it previously, and you must have missed my questions.

It still bothers me that your doctor described your EMG results as the nerves just being dead. That is not a typical description for someone who has ALS. What if something that is treatable being missed. This came to mind again yesterday, when I'd brought up the battle Tracy (Tag0620) went through to get her husband a correct diagnosed and treatment.

One of the other concerns, is, a while back, you reported that the clinic asked you if you were taking the Rilutek, and you'd replied you were not. They asked you if you felt any stronger, and as you didn't, they asked if you would please try it again. This is absolutely not an effect (a feeling of strength) a PALS would derive from Rilutek. So, again, it makes me wonder about your medical staff's qualifications. They should know how this drug works! ~ Even the swallow test you described is not what I've had to check for safety with swallowing. I've had the test you described, but it would not assess safety in swallowing nearly as clearly as a modified barium swallow.

I don't know how often you go there for follow up, but I'd definitely ask about all of this if I were you. Maybe (although I don't think you're timid) if you are hesitant, you could ask in the context that you've become active on an ALS forum, and some of your treatment/tests interpretations etc, are not what the others have experienced in other countries.

 

[Tokahfang]

Sleep sounds great. If that was a serious possibility, I would go with it too. Unfortunately, between the pain from spasticity and from the resulting structural damage, it has been over a decade since my last night of good, non-drug induced, sleep. I certainly don't claim that Modafanil/provigil is better than the real thing!

 

[irismarie]

rose, the response from the EMG that yhou mentioned was the first one I had while still with the idiot neuros at Agen. The next, at Toulouse, where there is the centre of excellence in ALS, confirmed without any doubt the diagnosis. This was only a couple of months ago.
The thing with the rilutek is that at Toulouse they really really believe that it helps the quality of life. I told them I was not interested in prolonging my life for a couple of months and they insisted that is not what is most important about it in their prescribing it. They are absolutely convinced it slows down symptoms and therefore improves quality of life. They deal with this disease only and are so passionate about their need to help that I follow them. They give me confidence and make me feel much more positive whi_le all the time insisting that every choice is up to me, of course.
I now shall be going every three months or sooner if I have worries.

For a year I was plagued by being with crap neuros who, whenever they sent me for other tests always sent a letter with me (sealed) saying that all the symptoms were in in my head. The stupid woman even refused to believe I felt fasciculations as she said one could not feel them, only other people could see them. and this is a NEUROLOGIST§!
Finally they sent me to a neuro SURGEON who was so ANGRY at them and at what they asked him to do (operate on my spine) he advised me straight away to get a new doctor and a new neuro and he showed me the letter. THank Heaven for him. That was when I changed doctors and the new doc sent me straight to this centre of excellence and since then everything has fallen into place.

 

[scouse]

Hi
thank you all for your replys I feel a bit better today my problem is I expect to feel the same as I did a few weeks /months ago and think I can still run round like I did,
I suppose I am kidding myself the MND is not progressing I am having a good sleep most nights but dont sleep in the day, what worried me, was last week I spent nearly all week with my feet up watching TV ( weather was also awfull rained nearly all week) and still felt no better ,maybe my battery was completly flat my physio says you have to consider your self like a rechargeable battery that needs to be charged up.
I suppose that is a good analagy.
take care
Scouse

 

[Blubear]

Hi scouse, gosh your name sounds familiar....hummm...think I have talked to you before? Well, anyway, fatigue...Nuvigil is wonderful, it is the same thing as provigil and modafinil, only it lasts 15 hours instead of 8. I can tell you from my experiences with taking both Nuvigil and provigil (modafinil is the active ingredient in both) is that if I were to try and take it every day, it does not work as well, and I take it for fibromyalgia fatigue. My dad who has ALS has taken provigil/modafinil and he loves it, but he does only take it when he absolutely needs to because he also feels like it stops working as well if taken on a daily basis. Before he found that miracle fatigue buster, he did the 5 hour extra strength energy drink that you can get at just about any grocery store or gas station. That is loaded with a ton of vitamins. None of the energy drinks seemed to work as well as that one.
Good luck hun!
Kari

 

[scouse]

Hi Bulbear
I think we have spoken before when I first started playing 18 holes of golf I used to drink Red Bull half way round for energy it did the trick just a bit worried about taking it now with caffine content, might try again
take care
Scouse