Fatigue is one of the tricky ones for me. Trying to ignore it means I am alseep at my desk or in the middle of a conversation ...
What I found has helped is that I've changed the way I eat; I'm pretty much vegetarian now; no meat (just fish) no white rice, no soda or milk, no coffee, no alcohol, no refined sugars of any kind. Lots of raw fruit and veg and lots of natural juices, no added sugar.
This gives me more natural sustainable energy; not periodic bursts throughout the day. I feel better in the mornings and my fatigue episodes don't keep me down as long.
The vitamins help too, I'm on B-12, D and Omega 3. Also, don't let him overdo it with anything; walking, yard chores...literally anything. Things which are seemingly very minor can lead to very draining fatigue. Don't let him get overheated as that tends to lend to it as well.
Hope some of that can help and good luck!
Hi, so sorry to hear your boyfriend is finding it difficult to deal with the fatigue issue. First, does hi employer know he has MS? If not you should consider informing them. There are pros and cons to informing your employer about medical and health care related issues, that is something you will have to decide on your own. But, by keeping the lines of communication open, your employer and coworkers may start to understand what is going on.
MS is a disease that can make most people say "gee, you don't look disabled or ill". A lot of what goes on with MS is hidden beneath the surface. It is not uncommon for coworkers to think there is a drug or drinking issue. Coworkers may see the external symptoms long before the individual with the disease thinks they can and that presents a problem. So think about keeping communication open, and if needed keep them up to date on MS and how it effects people including fatigue.
Now, fatigue in MS is not the same as normal fatigue someone without MS might have. What exactly does that mean? Well, researchers believe that fatigue may actually be a poor term for what patients describe as fatigue. In the coming years, you may find the term go completely and replaced by some other term.
When someone complains of fatigue there are things that can be measured to verify that condition. MS patients present a different picture entirely.
A few facts about MS fatigue.
- Self-reported fatigue does not correlate with neuromuscular measurements of fatigue.
- Self-reported fatigue does not correlate with measures of metabolic fatigue.
- Self-reported fatigue does not correlate with cognitive test performance.
- Self-reported fatigue does not correlate with MRI and electrophysiological measures.
In each instances above, someone with normal fatigue will have a measurable symptom. Take metabolic fatigue. When you run, and you get that ache in your side, that is lactose acid and it is a metabolic change that can be measured.
When you take a neuropsych test, a long, 5-8 hour battery of test to determine cognitive issues, someone with MS will do OK on the test. They will usually complete it slower than someone in the general population but will complete it OK. Someone with fatigue that is not related to MS will have extreme difficulty completing the test and may not complete it at all. Their test performance will also suffer a significant amount.
Its the same with neuromuscular measurements. Real fatigue will show a measurable result when someone is asked to do something strenuous.
So what is MS fatigue? It is thought to be caused by the location of MS lesions in the brain. Typically MS attacks certain areas but can attack anywhere.
The Ascending Arousal System is responsible for a lot of things. It ascends from the brainstem, and depends upon integrity of the thalamus, cingulate cortex, and ventrolateral preoptic nucleus of the hypothalamus.
It involves many neurotransmitters, including norepinephrine, serotonin, dopamine, histamine, and acetylcholine. Some of these may sound familiar to you. When you have certain medical conditions doctors may that one of those listed above may be low and prescribe something to boost it. Much the same as someone with ADD will get a boost via a daily supplement.
The complexity of the system, especially from a neurotransmitter perspective, may help to explain why MS fatigue is so difficult to treat. As MS attacks, any one of those listed above could be effected, finding the right medication may help, but the truth is that if the area damaged causes one of these to not flow freely, there may be no current medical relief.
Fatigue for MS patients is more like not being able to find the energy or drive to start a task. It's not being lazy. It simply that the chemical signal that makes "you" want to get up and go do something probably is not their for your boyfriend because one of the neurotransmitters is being affected.
I hope this helps explain a little about what is going on and what parts of his brain are being affected. It doesn't answer the real question about possible treatments and I'll let others chime in with what works for them.
Welcome to our group, it should be a place for you and your fiance to find some answers and some coping strategies. Don't be afraid to ask questions, you'll be surprised at the friendly group here and they always are supportive and that is something your both going to need because MS is not a curse, but it is a life long condition that needs to be treated. Is your fiance currently on a treatment program?
Sadly, its now time for me to go find the motivation to change the rear brakes on my car, something that even when I was feeling good took a huge amount of motivation.
Go Dr. Johnny!!!
That was great!!!
YOU JUST TAUGHT ME SOMETHING ABOUT FATIGUE. I NEVER KNEW.
I SWEAT PROFURSLY, ALDAY AND NITE.
(NOT MENOPAUSE) I READ THAT WE HAVE THERMOREGULATORY SYSTEM.
(HOPE I AM SAYING THIS RITE) IF THIS IS DAMAGED, IT CAUSES OVER HEATING AND SWEATING. FINALLY AFTER 9 MONTHS OF SWEATING,
I UNDERSTAND NOW. I SUFFER FROM FATIGUE ALSO.
DO YOU NO ANYTHING ABOUT, SILENT SYMTOMS AND MS?
Way to go! A very informative explanation, I printed it out for my MS notebook!
Thank you so much for the information. It is much appreciated. It's hard to deal with not knowing how to treat the symptoms that come up on a dialy basis. He has had a hard time dealing with this since he was diagnosed. He has not told his employer because he is scared that he will be fired. I keep telling him to tell them but his pride gets in the way. He doesn't want anyone to know that he is weak or damaged in any way. As for his treatment, he was taking Avonex for 2 years but stopped due to the horrible side effects. The DR's said that he would have "flu like symptoms" but it was like no flu I had ever seen. His temperature would sky rocket to 104 and he would sweat and have the chills at the same time. He wouldn't be right for days after he took the shot. Since then he has stopped taking anything. He believes that he would rather have a good quality of life now and pretty much hope for the best in later years. The DR's have tried injections in the lower spine for the chronic pain in his legs but it only worked for about 2 weeks and he was back to his usual pain. I just dont know how to help him and it makes me feel useless. I wish there was something I could do to take his pain away and get him back to his usual self but I know that will never happen. I just try to be there for him when he needs me and hope that will help in some small way.
Thank you all again for all you help and suggestions. I definitely feel welcome to your group and hope to continue writing to you all.
Sincerely yours, Malgor.