Fatigue is the bane of my existence. Clutter qualifies as my lifestyle. If I can’t see something it may as well be lost. I spend about 50% of my day trying to find things I have put “someplace safe.” The other half I spend looking for something I just had in my hand, became distracted and placed it in an unusual place.
MAKE A MOLEHILL FROM A MOUNTAIN: I devised a method of addressing this energy and life-sapping daily experience. I try to do 10 things a day before I allow myself to, say, play Words With Friends. Mind you, the bar of what qualifies as one thing is very low.
Putting dishes away can be counted as one task on a good day. On a more challenging day, the 10-task minimum can be hit by counting each dish that I put away. Often I find that once I start with the 1o, it is easy to add on a few more. Again, very low threshold to count: Open one piece of mail that has been sitting on the table for two days. (Obviously not recommended for anything urgent; those I do open right away.)
WORSENING FATIGUE: Lately, I have found it increasingly difficult to do almost anything. As I told one of my girlfriends one night, “I am too tired to open the refrigerator door.” That is serious fatigue. She suggested tuna fish. Great idea! My brain just didn’t think of a cold food option.
In addition to MS, I was diagnosed through a specialized sleep study with excessive daytime sleepiness (idiopathic hypersomnia) more than 10 years ago. The doctor doing the sleep test said I was one of the worst he had ever seen. There is a pharmaceutical for this: Provigil (modafinil)
OFF-LABEL USE: It can be difficult for people with MS fatigue to be prescribed this medication. Insurance may not cover medications for “off-label” use even when there is anecdotal evidence of benefit. Provigil was approved for use in narcolepsy and excessive daytime sleepiness (sleep disorders) and shift-work sleep disorders.
The drug is not cheap. It is unfortunate when something that works is unaffordable because of regulations that require expensive testing to validate the use for alternative circumstances. There is research ongoing to approve its use for MS fatigue.
The National Multiple Sclerosis Society article linked above and again here states:
Just wondering, did you have fatigue before being diagnosed? Was it to the extreme that you describe today? Did your fatigue worsen after starting DMDs? Have you adjusted your diet/fitness?
I did not have fatigue before being diagnosed. My first symptom, optic neuritis, occurred in 1987. I was not told I might have MS but I looked that up in my encyclopedia and it made the correlation for me. I was not diagnosed until 1994. The sleepiness and extreme fatigue did not start until 2002. I was unable to be on DMD therapy until 2005 for the first time (as I recall), then I could not afford so stopped, then got on again about 2013. There was never any relationship between DMD injections and fatigue as far as I can tell.
I have had to adjust my fitness to my sorrow by eliminating most of it: yoga, special MS exercise program, swimming, and other activities because I simply cannot do much without having to take a nap and that makes it hard to travel to swim for example, or attend yoga classes.
My diet is pretty much the same as it has ever been. Nothing special. Spinach salads with pecans, canned chicken, and croutons. Soup. Simple to heat up in overn prepared foods because cooking takes too much time and effort.
That was very strange reading in that I too have the “safe place” issue- until I finally designated a certain drawer as the safe place. I also do the “must do 10 things” strategy for getting stuff done and yes, I too manipulate what counts as 10. Putting pandora peppy music channels on helps with motivation. I tried adderall but did not like the side effects and like duck imprinting, got sucked into whatever I happened to be doing when the drug kicked in. So, you are not alone and perhaps that offers a bit of solace.
Thank you, the idea of a single “safe place” is brilliant in the simplicity and sensibleness. I will do that from now on. I think I will also start listening to Pandora while I do my 10 things. Sometimes I listen to books on CD.
I have Breast cancer and the problems related also. My Dr had me on Provigal. After fighting the insurance the MS society sent me a cover letter for him to send in for the approval. Then insurance changed. I just went off of it. Yrs later after breast cancer and 4 surg within a yr. My life has literally sucked because of fatigue. I am raising a 13 yr old she was 5 weeks old when we got her. The others we raised have went to college and working and on their own. So it’s my husband with very high BP doing most of everything around the house plus working full time. And my 13 yr old who is a self harmer after she found out I wasn’t her real mom ( feels she’s unworthy ) who I have no answer when she asks why don’t we ever go anywhere? I was on adderall 30 mg tab 2 times a day . It helped me so much. Made me eat.and get things done. My Dr joined the army. That was 3 yrs ago. I’m underweight again since being off of it. It made me eat. Now I forget to eat or drink and end up in the hosp dehydrated and considered anorexic. I’m not. I love to eat. But I throw it up unless it’s crunchy like chips etc. I love home cooking. I cooked and ate and gained 25 lb while on adderall then lost again after my Dr joined the army. My new Dr. Makes me feel stupid when I say it makes me eat. Gave me 160 mg of prozac a day. I laid on the couch all through Xmas and just got up yesterday .I was in the hosp for 8 days and got out the day before T.G. My teeth are getting worse from eating junk food. And drinking cokes to try to gain weight. I’m not on any pain meds or illegal drugs , don’t smoke or drink.Believe me, I’m in pain a lot but God Forbid I ask for something like that. I’m 61 yr old and feel like I have no quality of life. I was in Diamond sales for years and top sales person. Now I don’t even want to go into the bank or feel like answering my phone. I don’t know which way to turn. Thank you for listening if I’m even doing this right.