Hi Linda, sorry you're dealing with the dreaded fatigue. What has made a huge difference for me is amantadine. It doesn't work for everyone, but well worth a try - cheap and not a stimulant like adderall. You could ask your neuro for a prescription to try. I was leary of taking drugs at first but so glad I tried because it really has helped.
The deal with MS is energy is like money in the bank you only get so much and when it is spent it is gone. What many of us do is our harder stuff before noon. If you can't get something done you can't. Light exercise such as a short dog walk can help.
The doctor can try adderal or nuvigil for energy. I have tried adderal I felt I would jump out of my skin.
Naps are good.
I love Alex's analogy. It is so true to look at it like Alex does.
I tried provigil which is usually prescribed for narcolepsy and I took naps while taking it.
My husband did some research on herbal remedies and I am currently taking maca root powder, 1 tsp shaken into a drink and it seems to be helping. It is in the raddish family. Not super tasty but tolerable for some energy. It has even helped with my hot flashes.
It's best before taking something new to do some research and make sure it is safe with other meds you may be taking. Maybe check with your doc, although they probably won't know what it is.
Don't be so hard on yourself! Fatigue is part of this lovely disease. The same wise lady(Alex) told me once that your not gonna die from a little dirt or dog hair. She was so right.
Best regards, barb
Thank you all. I will try the maca root powder while awaiting may appt with the MS Specialist. I need to wait till then to get a firm diagnosis or not. If nothing else, you've all made me feel a bit better knowing that I'm not alone.
I appreciate the help.
I tried Provigil with no luck and then Adderall with no luck, taking a long nap after each of them. Then my neuro ordered a sleep study (which cardiologist thought wasn't necessary) and pulmonary doctor then ordered CPAP. Wow, what a difference. Was still having fatigue after that, but not sleeping all day. Went back on Adderall for the fatigue and doing well now.
Sometimes we have to look at other reasons, other than MS, for similar symptoms. But fatigue is part of MS. Alex also gave you some good advice; if I overdo it, I'm down for the count, so have learned to pace myself also.
I'm looking online at Maca Root and find that it comes in capsule and powder form. Also some call a daily dosage 500 mg and others 1000 or 1200. Is there an advantage to the powder over the pill form? What dosage is recommended? Thanks!
it can be hard to get others to understand this fatigue - it is surely different than being tired. I find I am good to go for hours and hours as long as I don't have to stand up and do sonething. FAtigue is the most common complaint we have heading to the neurologist's office. for each of us it we havde to try swhat might work fo rus.
hmmmm bummer, my post went missing again lol must be with all those left socks, i'll try again.....
In the beginning of this journey of mine, these weird periods of fatigue i kept experiencing were blamed on all the common 'female' reasons, eg new baby - active toddler - full time work - working and family - etc.....eventually when the hand tremor and the weird muscle issues got added to these episodes. My (ex) family doctor got stuck on Iron deficientcy, then hypoglycaemia, then peri-menopause it didn't matter that all my blood test results were always normal....
I tried everything, i even tried prescription meds that sent me into a drooling la la land (grrr for the life of me i can't remember the name now), eventually i stopped talking to my doctor about it happening, no help so no point and these weird episodes always went away.......
I think when you are desperate for a solution, you often don't feel there's anything to loose by trying it and everyone usually has something to recommend. It still took me years to work out that there was nothing on the market, that gave 'me' anything more than a few extra minutes of energy, although those tea spoons of sugar (cheapest) still didn't stop me from crashing out....ahhhhh sugar rushing hyper's those were the days. :D
I seriously couldn't eat enough, power nap long enough, be fit and exercise enough, be happy enough, swallow enough vitamins, guzzle enough energy drinks, protein shakes, glucose tablets etc etc etc to grab enough energy to push through those fatigue episodes. I could probably look back to those years and wish I had it back again, lol now it doesn't seem half as bad.....
I have to potter about through out the day, balancing my energy so i can still function but if i get too hot or physically do too much, I have no choice but to stop and rest. The key for me is to pay attention to the signs before I start walking like a string puppet and fall over but it's harder these days for me to catch it, my window has shrunk though i'm content to blame it on being summer here!
One helpful way to handle it, is to first learn and understand your self, know exactly what you can do before your issues start to reappear or worsen, work out what helps prolong your activity window or what shortens it, absolutely know your limits and learn to stop!
Oh, thank you so much for walking me through your journey, JJ. It is something that I've not dealt with before, and very frustrating, to say the least. I will find what works best for me in time, I suppose. :) Of course, patience has never been much of a virtue of mine, but with all this new stuff I'm dealing with, I know that I don't have a choice.
My days only last a few hours it seems. I sleep for hours, get up and last a few hours of getting dressed, taking pills, having coffee. Maybe do a few dishes. Then TV time or my laptop.
If I shop one day, I'm finished for a few days, just too tired. My body and brain won't do more. I find every year it's abit worse.
Take it easy
Since this is a public forum, I think it's important to say that it's not possible for everyone to manage this problem behaviorally. For example, someone struggling to work full time, with a young family might have few options other than to try anti-fatigue medications. Naps are great, but in the middle of my last chronic fatigue - hit by a truck type - I was fully functional for maybe 2-3 hours. That can interfere with life hugely. There is also the issue of those who are possible or probable MS, who don't have a diagnosis which will allow others to recognize their needs and new limitations. If they have to continue as best they can, however it can be done is OK. Quality of life is important.
I am sure this problem is as unique for each individual and what works or "is" for some will be totally different for others.
I sincerely appreciate everyone sharing their experiences and the offering of support.
One thing that no one has mentioned; please have your primary send you for a sleep study ASAP. Sleep disorders are much more common in the ms population. Or it might not be related at all.
An undiagnosed sleep disorder can make a pre-existing condition much worse, and in fact can cause neuro symptoms.
I have both central and Obstructive sleep apnea (both started with my first relapse two years ago although the obstructive part comes and goes). The machine helps considerably for those. It doesn't help interrupted sleep from electric zings or shocks in my legs ... But I digress ;).
Thank you for the suggestion, but I don't think I have any sleep disorders. Except for the two years following the death of my son, I sleep like a log. I sleep very soundly for 8-12 hours, never waking up and never even hearing anything. There could be a terrible thunderstorm during the night and never wake up.
I still encourage it. I spoke to a woman at the sleep clinic who also never noticed any problems (except sleeping more than usual) -- her AHI was 60. . You never know.