Extreme fatigue

[Cindy]

How do you cope with this extreme fatigue. I been like this since January. I had fatigue before but not like this

[Jasper]

I think the fatigue is very debilitating and difficult to deal with and I also think it is grossly under-appreciated by many MDs, including many Rheumatologists.

When I get extreme fatigue for several days, I know I am in a flare. I do get other symptoms along with the extreme fatigue, mainly an increase of musculo-skeletal aches/pains, feet and ankle and lower leg edema, increased brain fog, some urinary dribbling, poor concentration, etc. The fatigue is the most difficult to tolerate.

My Rheumatologist prescribed Prednisone tapers for the flares. My Prednisone tapers are as follows:  20 mg Pred x 5 days, 15 mg Pred x 5 days, 10 mg Pred x 5 days, 5 mg Pred x 5 days, then stop. The Prednisone tapers work. They stop the flares and I feel much better for awhile.

Have you discussed this extreme fatigue (and any other concurrent symptoms) with your Rheumatologist? If the fatigue is from a flare, maybe your Rheumatologist will prescribe Prednisone tapers for the flares.

I hope you can get some answers and some relief soon.

[Joe S.]

Years ago, when hit with fatigue, I would use ginseng tea. Now when I was hit so bad that I could not move. I started Cistanchi. It has been a miracle. Please check for interactions, side effects, and counter indications.

[Cindy]

I already did a round of steriods and nothing.

I feel soooo frustrated

[susanep]

The fatigue is terrible for me, but I don't seem to have a choice. A few days ago, I had enough sleep, and so the day started out good for me, and I put on a load of laundry, washed a few other things, did some sewing, and something else I did. All I know was I felt so proud of myself.

Three days later and I am still recovering. lol... I enjoyed the bit I did that day though, because the little I did are far and few between.

hugs,
susanep

[cccourt1942]

susanep:  I could have written this!! 
c3

[angeldancer]

I am in a similar predicament.  The extreme fatigue is horrible.  I did something on Feb 7 and its my birthday and I haven't recovered.  I totally forgot to call the doctor for a prednisone drip but I get so tired of taking the meds.  Every time I go to the doctor its 75 dollars.  Now I am picking when I go because my income is barely anything.  I kind of try to take my sleeping pills through the flare until it goes.  Sometimes I don't even know the cause is a flare until I come into our community here and get an aha moment.  That's of course the brain fog so its bad when you can't remember what a flare is called.  My new me I guess.

Good luck and don't be so hard on you doing this awful fatigue.  I try to sleep through it but find a way that works for you to cope.

Peace and blessings,
Angeldancer

[araminta]

I agree Cindy this is probably the worst problem with Sjogrens.   I sometimes start the day fine but by mid-afternoon I feel tired again.   Other days I feel tired all day.

I have been looking into how people cope with Chronic Fatigue syndrome, and found some info about graded exercising which I thought I would try out.   The article I looked at suggested doing some stretches every day (I do some yoga to cover that), and then finding a "baseline amount" of exercise, i.e. a minimum amount of exercise that you believe you could do most days.   For instance cycling or walking for 10 minutes.   I have an exercise dvd which I haven't done for about a year,but I decided to do the warm-up as my baseline exercise, about 10 minutes.   The idea is to stretch and exercise every day if possible, keep doing it at that level for several weeks or until you think you could increase the exercise a bit.   Don't increase in big steps.   Don't be upset if you have setbacks, just go back to the baseline for a while.

The article said it is also important to find some enjoyable activities to do regularly - any activity or hobby you like, even try a new one, anything to give you a psychological lift.   And including meditation in your routine can be helpful.

I've only just started doing the above so I don't know if it is going to work, but it seemed to help the author of the article, and it does make sense to me to try to attain some level of physical activity, however small it might seem to others, as I suspect it would have a mental as well as the physical effect.

[BGordineer1960]

I have only recently begun experiencing flares.  My first lasted several days and i stayed in bed and had no appetite.  I am now having one that has been going on for a week -  i have lost my appetite again.

Does anyone else experience the loss of appetite during the flare.

My WBC has also dropped to 3.8, the lowest it has ever been.

Anything others can share is much appreciate having not had many of these.  Its scary, as i keep thinking it is something much worse.

Thank you

[Judie P]

Don't worry.  I am the same way.  I get the flares and I lose my appetite.  I thought for sure it was something really bad, but I have had all the tests for stomach, etc., and I am fine.  I find that if I eat something with caffeine or sugar, I get my appetite back.  Weird, huh?  I fill up with a lot of gas from SJS, so sometimes my stomach just feels full all the time and I do not get hungry.  You will find many who say that their appetite comes and goes on this forum.

[SjoDry]

Cindy,

I am in the same boat. My fatigue is the worst I can remember ...ever. I sent my doc an email today & said we need to have an appt. We have discussed an increase in my IVIG in the past as I won't take any biologics due to my CVID.

I am also thinking about decreasing my work hours at the moment..I can barely function. I keep thinking it's got to get better.

I sympathize with you & know exactly how you are feeling.

Take care.
SjoDry

[Gigi]

Im so sorry to hear about your fatigue. I think doctors don't realize how bad it is because until you experience it, you don't get it.

I've tried provigil and adderal - excuse the spelling- . They do work for at least a few hours . You can take either daily.

G

[warmwaters]

Just to say you're not alone.  Fatigue is my worst symptom.  It is very hard to deal with, because you almost can't believe that you can be as tired as your are. It's not like you just didn't get any sleep for a few days, it's like you've been moving heavy boxes for 12 hours a day for a week.

And it's hard to get people to believe how tired you are.  Some rheumies get it, others don't. If you haven't heard of spoon theory, google for it, and go read about it, as it's a great way to explain fatigue to others.

[P.Trish]

I hear ya'!
Just when I think it can't get any worse, the fatigue deepens. I am still shocked when it slams me. During my last visit with my rheumotogist, I asked if one could die from fatigue. He sympathically replied, 'No & I've been asked the same thing by other patients.'

On another thread, I've mentioned that I'm starting Benlysta (April eighth ) primarily for fatigue.

Among other things, I've tried:
Nuvigil (gave me high BP & I am a stroke survivor)
B12 injections
High doses of DHEA

Moderate daily is essential (like walking & stretching). The walking part doesn't always happen.

[LucyD]

My fatigue is increasing and it is the most challenging part of this for me. I have to work full time and I am so tired when I get home each night. I try to be in bed by 9 or 10 but don't always make it. I struggle to get myself out of bed each morning. By Friday night, I am in bed by 9 and often sleep until 10 am on Saturday. This weekend I also needed a nap Saturday and today (Sunday). As a result, the house did not get cleaned, but at least I did the laundry and managed to cook. The fatigue is scary to me. I start to wonder if I will be able to continue working. What if it gets worse, etc. My C3 level is a little low - just got the call from my rheumy from my last appointment.