This fatigue component is really getting me down. I feel like I am living by the white knuckle approach; just hang on and get through. I can't seem to get anything done and looking at my latest art projects makes me hurt just thinking of using my hands/neck/arms. Has anyone found anything that can give you a 'pick up" that can keep you going? The pain isn't as bad today as this lethargy. We did come to the coast for the Memorial Day weekend and the trip as well as climate change seems to just blast me like a freight train. Besides living in the jaccuzi tub I can't seem to do anything. Thanks for being there to turn to.....
Hugs, Colleeney!
The fatigue can be the worst part at times. For me, if I balance activity and rest, I can get more productive time out of my day. I try to rest or nap in the afternoon if I have something going on in the evening. The Spoon Theory helps a lot as well (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/).
I find the best way to fight the fatigue is to rest. I will tidy up in 15 minute blocks and spend the rest of my time in bed or on the sofa doing nothing maybe reading if I can or watching TV. If that is too much I stare out the window. Sometimes I lay outside on my swing. I believe the fatigue happens to make us rest! Wether we want to or not. You body is telling you that your disease is acting up right now. Sometimes you just have to work through it but I generally give in now cause I find fighting it prolongs the agony.
The spoon theory is another great way to get through the day. Some times I get up and find I have no spoons left already! I hope your fatigue eases soon.
I’m the weird one. I decided years ago that if I had no reason to be tired, then it was symtom like any other that needs dealt with. . . If a joint is stiff then you stretch it. If you are fatigued its lack of endorphins (or adrenalin) Sooooo what can you do that gets those things flowing quickly? Run in place? Take a walk? See sacary video? Yoga is good. But can I suggest something most of us tend to ignore? Yeah I know thats all us guys think about. . . Just make SURE its a fully satisfying experience no mater what it takes. . . .
It helps - really.
I had the same problem the fatiuge was killing me! I had also started gaining a ton of weight so I decided to make a very big change in my life style I started eating very healthy mainly fresh fruits and vegtables with lean meats like boneless skinless chicken and turkey breasts, salmon shrimp etc....and what I believe has been one of the biggest impacts Ive been drinking only water.....and since i cant do the typical aerobics and such ive been walking at least once a day for 30 minutes and I cant tell you how big of an impact it has made in my overall energy I am sleeping better and even though i still feel the need for a mid day nap I fight through it....I cant tell you how much better this week has been for me after changing these things!
nym,
This is my first time hearing of the Spoon Theory, and I like it! Thanks for sharing
nym said:
Hugs, Colleeney!
The fatigue can be the worst part at times. For me, if I balance activity and rest, I can get more productive time out of my day. I try to rest or nap in the afternoon if I have something going on in the evening. The Spoon Theory helps a lot as well (http://www.butyoudontlooksick.com/articles/written-by-christine/the...).
I read somewhere that vitamins (especially those in the b family can help), so when I ordered fish oil from the company my dr suggested (because they’re organic…and I’m sure she gets a kick back of some sort), I ordered something to help with my energy. It took a few weeks to kick in but I think it helps. Here is what I use (it’s not cheap $50 a pop but lasted awhile). http://www.integrativeinc.com/Products/Products-by-Health-Concern/Energy-Enhancement-and-Fatigue/Energy/73243-End-Fatigue-Daily-Energy-B-Complex.aspx. You might want to ask your doc at your next visit.
I take what I refer to as power naps. I will lay down for 20-30 minutes for a quick nap. It works wonders for me most of the time. Hope it helps you.....Hugs!
CJCB said:
I read somewhere that vitamins (especially those in the b family can help), so when I ordered fish oil from the company my dr suggested (because they're organic...and I'm sure she gets a kick back of some sort), I ordered something to help with my energy. It took a few weeks to kick in but I think it helps. Here is what I use (it's not cheap $50 a pop but lasted awhile). http://www.integrativeinc.com/Products/Products-by-Health-Concern/E.... You might want to ask your doc at your next visit.
Hi Colleenney,
These are all great suggestions, I look over these 'energy drinks' when standing in line in the grocery store, and CJ is right about B vitamins, as that is what the contents of these are. The sublinugal vit B 12 could also help you get going, a big spoonful of honey or a slug of maple syrup (pure) along with movement, like lamb suggested, to get everything flowing... but this will only work IF you have had enough sleep!
I push so hard to get moving, or stay moving, that sometimes it is hard to turn it off, then I am up nearly all night! We all seem to eventually need an incredible amount of rest. Speaking for myself, if I don't have adequate sleep, it is very easy to 'loose my patience, or personality'!!
I do hope that we have all been helpful to you, we do truly understand. We have the grand kids here with us anywhere from 1-3 days and they bring a new level of exhaustion into play, but even more joy! I am always interested in ways to cut the fatigue, get moving, then get to sleep, and stay asleep!
Hope that you can get into your art projects and have some fun with them!
Wishing you well,
SK
30 minute naps turn into 3 hours of my wife trying to wake me up.
JacksonJ said:
30 minute naps turn into 3 hours of my wife trying to wake me up.
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Don't they just? And they feel like 2 minutes of shut eye.
I just started a new pt job delivering meals to the elderly. It's three hours a week, and when i get done, I just sit and stare at the computer for several hours, oftentimes not comprehending a thing. But it helps to recharge me, usually. If not, then a rest.
I do find that a proper balance works best. For a while I couldn't get up at all and didn't. Felt just awful. Now that I've got the job, the stretching of the muscles helps somewhat. My body still has some left to give and it wants to. At least I'm earning a bit of money for being tired, if nothing else!
So I guess my suggestion is to do what you can do to keep your body active and then rest when you need to. Let your body guide you, as well. I know that when I overdo it, I end up feeling just awful and causing all sorts of grief. Our body really does know best on this issue.
Ditto on the healthy eating. I have tried to follow a low acid diet which consists mainly of fresh fruits and veges but with very little meat because meat is acid producing in the body. I also eat a gluten free diet and no processed foods. It was very difficult at first but I've been doing it since last October and I have lost 35 lbs. I have some very good days and some bad days. I excercise as often as I can ( I have a treadmill ) and sometimes when I feel really tired I will do 30 to 40 minutes. It helps alot with the fatigue.
amueller said:
I had the same problem the fatiuge was killing me! I had also started gaining a ton of weight so I decided to make a very big change in my life style I started eating very healthy mainly fresh fruits and vegtables with lean meats like boneless skinless chicken and turkey breasts, salmon shrimp etc....and what I believe has been one of the biggest impacts Ive been drinking only water.....and since i cant do the typical aerobics and such ive been walking at least once a day for 30 minutes and I cant tell you how big of an impact it has made in my overall energy I am sleeping better and even though i still feel the need for a mid day nap I fight through it....I cant tell you how much better this week has been for me after changing these things!
Okay, I'm having one of my "DUH" stupid moments. Your reminders made me think about my diet and vitamins. I hadn't really put my two autoimmune disorders together but I did eat some gluten last week which means I need to beef up on the liquid vitamins because my ability to absorb them is damaged for awhile. I have a sevre case of Celiac which caused major havoc and damage until it was diagnosed. I stuggle w/getting enough B's for some reason although calcium and magnesium are also low most of the time. Now I'm seeing the two diseases as impacting each other so when my system gets a hint of gluten it gets stressed out max and of course the psa would not like it and react w/more symptoms. Thank you so much for being here to work through these issues. Sigh, does it ever get easier?
TNT is right. The fatigue was awful for me but after a half hour swim. It would clear my head and the fatigue would go. The effect was amazing.
Also my rheumatologist said to have time out naps of 10 mins only. Any longer then the body gets used to the naps leading to a vicious circle.
I wish I could say yes, that it does get easier but I have found that everyday brings different challenges with this disease. I have also learned that a positive attitude goes a long way. that means that you have to find the good things about your life and focus more on them. I know that this is not what you wanted to hear but until there is a cure for this thing it's the best way to handle it.
I am a firm believer in eating healthy foods and using natural supplements. Just remember that you didn't get like this overnight so it will take some time before the healthy changes you make in your lifestyle will show any benefit.
And above all, don't forget to excercise.
Colleeney said:
Okay, I'm having one of my "DUH" stupid moments. Your reminders made me think about my diet and vitamins. I hadn't really put my two autoimmune disorders together but I did eat some gluten last week which means I need to beef up on the liquid vitamins because my ability to absorb them is damaged for awhile. I have a sevre case of Celiac which caused major havoc and damage until it was diagnosed. I stuggle w/getting enough B's for some reason although calcium and magnesium are also low most of the time. Now I'm seeing the two diseases as impacting each other so when my system gets a hint of gluten it gets stressed out max and of course the psa would not like it and react w/more symptoms. Thank you so much for being here to work through these issues. Sigh, does it ever get easier?
i would also like to know ways to deal with the fatigue, I am finding it hard to get through a day of work and then only want to go to sleep when work is done. On the weekends, can only do a few of many things i would like to do...this seems to be even harder for me to deal with than the pain
I don't know if I can explain this well but I'll try. The theory is the fatigue is the result of the endorphins in your body being used to fight pain and/or inflammation. SO one would think getting those things under control would reduce the fatigue. BUT it doesn't. there are a couple of reasons. Lot of us have a bad habit of using pain medication (opiads) to fight pain. That is one thing we should NOT do (but the docs lets us do or change docs till we find one who will lets us) They are business people too. The use of these pain meds produces artificial endorphins (its how you get high) There has been study after study proving the use of these produces Hyperanylgesia. Put simply you brain gets wacked and it doesn't distinguish between big pain and little pain anymore. Some of us have Fibromyalgia it the same thing in effect. (used to be called chronic fatigue syndrome) We in short have a lack of endorphin and thus are fatigued. There is a growing use of antidepressants (LIKE tamitriptyline and fluoxetine) to help and they do when coupled with inflamation controlling drugs.
Okay so far so good, you have inflammation under some control, you have worked with a pain management specialist to get of the opiads, and you have a good antidepressent on board. (and I assume no nicotene) but you are still tired.......
Maximum security inmates with long sentences often do not survive their sentence and die of chronic fatigue. its a condition ccaused by simply sitting 23 hours a day in their cells. Their body become accustomed to doing nothing and when called on to something it can't its a coping mechanism for boredom. Teenagers sleep hours a day sometimes creating the same problem or spend their free time on social media doing the same.
Believe it or not once you have done all the right things with medication the ONLY thing that will overcome fatigue is EXERCISE. Most of us have been training our bodies for years to BE fatigued by foregoing exercise because we "hurt" but hurt because we don't exercise. lack of exercise slows down the bodies natural pain control causing more pain. The main think we can do to overcome pain is EXERCISE.
Yeah it seems a contradiction - movement makes us tired. movement makes us hurt. But its our thinking taht makes it happen
thanks for all that detail; I try to exercise every morning and walk my dogs daily; difficult to do, but will continue to push through this