Hi everyone. I am newly diagnosed with sjogrens but have had the fatigue for two and a half years. Any advise how to get some energy would be greatly appreciated.
This is the eternal question for any one with an autoimmune disease, or chronic fatigue from any problem.
Our fatigue is not the kind that a nap fixes, or "keeping in shape" prepares you for or protects you from. It's an independent beast, acting where and when it wants, sometimes predictably, sometimes seeming at complete random.
As a result, the usual recommendations don't always help. One thing to keep in mind is the individuality, always listen to your own body's responses, and try to work with them. For example, I've found over the years that I feel really sleepy within half an hour of eating, (think two helping turkey supper nap feeling after just a piece of toast). This usually passes in 30-45 minutes whether I nap or rest, or just push through it. Because of that, I try to plan my day so that I have nothing to do that requires attention or focus after I eat. There are also unpredictable episodes of overwhelming fatigue ( if I don't lay down I'll fall down fatigue) which I cant plan for , obviously, but which I can adapt to in most cases. I know I can't push through this type of episode, I have to stop what I'm doing, with apologies to anyone I'm with, and just sit or lay down for 20 minutes or so. Sitting , meditating, or just "spacing out" will help, I don't necessarily have to sleep.
Keeping as healthy as possible in the overall picture does help, Even a "sick" body can be optimized, so I try to eat well, maintain vitamin and mineral levels at normal, don't eat processed, no smoking, no alcohol, mild to moderate exercise as tolerated, you know the usual drill.
One of the biggest mistakes I made in the early days was going all out on "good days" and paying for it for it with several "bad days". Even if you happen to feel like you've won the jackpot and have abundant energy, don't drain the barrel!
Are you by any chance taking plaquenil (hydroxychloroquine)? Once I started taking that medication, I found that in about 3 months, I had more energy and was less tired.
Liz D.
There are many types of fatigue interventions differ depending on the type. If you have not read about Spoon Theory I highly recommend it.
I agree with what Linda said. I have had this and lupus for several years now and my fatigue is worse than ever.
susanep
I know that everyone is different. I found that cistanche helps me. It is a supplement derived from a mushroom. I take one capsule per day.
The Plaquenil or Hydroxychloroquine is one of the first meds recommended for people with Sjogrens. If you do a search in the search section on one of the first pages on this site you should find many articles about this drug. You will find that it is said that it can cause vision problems. Doing this search will lead you to articles that, for the most part, have been written by me regarding this drug.
One needs to know all about this drug as it has been used for years and was first used for Malaria and found to help people with autoimmune issues. It is given in much lower dose to autoimmune patients and I have taken it for about 10 years or so. Helps fatigue and aching. Just helps one to feel better in general. Good luck. meirish
I agree with everything Linda wrote.
I have tried nearly everything possible to combat fatigue and it has been one of my most stubborn and debilitating symptoms.
What has helped so far:
AIP diet - I cannot function if I stray from this diet, however it only keeps me functioning, not energetic by any means.
TAURINE - This is a supplement I have been trying lately which is also used in energy drinks and has many benefits. So far it has actually given me energy - more than anything else- and I am very excited about it. :)
Linda is so right about "not draining the barrel". When we have a good day we think we can do it all and we try to. Ny husband would always remind me that I would pay dearly for getting a lot of things done on one day. I would end up needing to lay low for a week sometime. It isn't worth it.
I had to go look up a drug that people from this site were sometimes prescribed for terrible fatigue. The name of the drug is Provigil and it is given to people who have narcolepsy. This is a disease that causes people to fall asleep at the drop of a hat. They just can't stay awake all day and it interferes with life. Some people with this disease take this drug every day and some just take it periodically when they need to be awake say to drive a distance or to get some project done. I don't know the dosages, etc but I did want to mention it as it may have a place in someones life.
I would probably check with a neurologist to find out more about the drug and its effects on a person who doesn't have narcolepsy. I don't know the side effects but would image it could keep a person rather "high" to prevent falling asleep. I would wonder if these meds come ini low dosages or in pills that could be cut in two.
I have seen very little about this drug on this site in the past few years so there may be some reason for that. Be sure to get a doctors answers to many questions before trying this. It may not be used like this anymore either. Avoiding drugs is always a good way to go or to keep drug use low as it prevents any issues that could arise. I don't know if it is addicting for some people. Like I said it is a thought that requires research. meirish
There are indeed studies that indicate that Provigil / Modafinil may be helpful.
It didn't help me at all unfortunately and even worsened my dryness.
It's worth trying though as each of us may react differently.
I have the Modafinil. It never just give me energy, but it does work on me kind of like being high. My husband says he can tell when I have taken some, because I start talking fast and keep talking. I do get more motivated, but my body stops when it has met it's limit or I keep going just a little more and then pay for it.
susanep