Severe fatigue

[eina]

I have had the worst fatigue of my life this entire year and it keeps progressing. Like I am completely non-functional, went from exercising 6 days a week to getting dizzy and exhausted from grocery shopping or cooking. My memory is completely shot. I struggle to pay attention to movies. I can't even drive anymore. I don't do anything, I can't work. It's only getting worse. I have struggled pretty seriously with fatigue and brain fog for over a decade and this level of exhaustion is something I have never felt before, I feel like death. It scares me.

I started Plaquenil earlier this week but I am really sensitive to medication so I'm having to move up slowly, it will be a long time before I'm at a full dosage and even longer before it starts to work.

What can I do in the meantime? How can I be sure this is even the Sjogren's and not something new? No one is taking me seriously, I tell them "hey I feel like I am literally dying? I spend most of my day slumped against various walls with my eyes closed because I am too exhausted to function" and they're all "haha yeah man sucks (: your copay is $65"

It's been 10 months of this now, I can't take much more of it

[Joe S.]

I do not know where you are. I am able to get cistanchi. it is derived from a fungus. it has greatly improved my energy. welcome to the forum if I have not said it before.

[Gorn]

The fatigue is really discouraging, it drains your will to go on, and the brain fog is downright scary.  It's tough, there is no way around it.
Give the medication a chance.  Really, what do you have to lose? 

I've had some success with trying acupuncture.  I have chronic migraines, too, and I really understand how bewildering it can be to try and figure out what is causing this. 

Before I was diagnosed, I had people telling me it was all in my head, or I was just needy for attention.  It sucks.  I'm sorry you're going through this. 

Recently, I was asked to participate in a research study so they can try and learn more about what is causing this.  I'm not saying a cure is out there ... but in my case things did start to improve. You can't predict what will happen in the future.  Hang in there.

[irish]

I have had some of the fatigue at times. It sort of comes and goes and it is not fun. Have you had a sleep study? If a person doesn't get restorative sleep or body can just fall apart. Also, severe fatigue can turn a person into a bumbling idiot. We can't think, reason or balance our check book.

The plaguenil should help with the fatigue in time, but with the amount of fatigue that you have it sounds like you would benefit from some medical intervention. There are medications that can be taken that help to increase a persons alertness and decrease the fatigue. These meds contain chemicals our body needs to decrease the fatigue and help one be alert and able to cope with the normal activities of life.

Do not give up because when the fatigue gets so bad a person can sink into depression. Go to your regular doctor or else to a neurologist who can also help with this. Many people with autoimmune diseases have sleep disorders so a neurologist can help with this also. Good luck and please let us know how you are getting along. Irish

[Bigleyj]

I was like that to begin with. Once i had been on Plaquenil for q couple of months the fatigue was better. Not gone but not so severe.

Hang in there 😀

Jo

[warmwaters]

The kind of fatigue you're describing is consistent with what I had at the onset of Sjogren's. I was working a 60 hr a week job, and suddenly turning the TV on and watching a show to the end seemed like a lot of effort.

There are many possible courses of action, most of which will need a doctor's assistance.  None of them is right for everyone.

One theory is that the fatigue is related to inflammation, so, doing things to reduce inflammation is good.  These might include plaquenil, steroids and other immunosuppressants, anti-inflammatory diets, or biologics. 

Another possibility is that pain is causing fatigue. Some approaches to that include targeted exercise, NSAIDS, stronger pain meds, use of antidepressants (specific ones) that have been shown to reduce pain, acupuncture, and possibly meds to treat neuropathy if that's part of the problem.

Another approach is the use of stimulants. For some, they can take a daily stimulant, and it allows them to function better, and reduces brain fog.
For me, this was effective, but I couldn't do it daily. So I used it as a once in a while thing when I knew I had to be sharp for a meeting with lawyer, or attend an event like a social gathering.

So there are things to try. You'll want to start with some of the less risky ones, and do it with the advice of your medical team.

[eina]

Well, I definitely feel reassured knowing other people have had the same issue. I will keep up with the Plaquenil and see if it improves, I also have a neuro appointment coming up so I'll mention it. I'm working on getting my diet back on track which should help some, it's become very processed as I've run out of energy to shop and cook.

Oddly, I have noticed that as the fatigue worsens caffeine no longer gives me positive effects. I started drinking coffee regularly at the beginning of the year when the fatigue started kicking in. It never gave me much energy but it helped my mood and focus a lot until sometime in the late spring / early summer when it started doing the opposite. Now when I drink it I feel fuzzy, anxious, and exhausted within half an hour. Very strange and disappointing, had to switch to decaf.

[Lotus1]

Fatigue is so awful.  I feel sorry for you.
High dose ambrotose complex (natural plant carbs/sugars, amazing stuff) has been my life saver for fatigue and other things the last 8 years, not cheap though!

Trust you find help.

Lotus1

[Lindabridge]

I well understand your problem with fatigue, brain fog, and weak memory.  At first I thought I was going through a kind of dementia, because I could not recall simple events that had occurred in the recent past, and I was constantly forgetting or confusing peoples' names. It is truly frightening when you have been so competent before Sjogren's strikes. 

Since you've just started to take Plaquenil, you might find some improvement once it kicks in.  I find that ginseng liquid extract, or even just the tea gives me a mild energy boost.  It helps me think more clearly as well.

Hang in there.  You're not alone. 

[heatherk]

Hello, newly diagnosed here. The fatigue is definitely the worst part of this disease for me! My pain level decreased a LOT since starting prednisone but my fatigue was the same, and since it was debilitating before, it is still debilitating. So my rheumatologist prescribed me Provigil at my last appointment last week. My insurance is requiring prior authorization however so I am still waiting to see if it will be approved. I guess it's over $500 or $600 a month for this med? I sure hope my insurance will agree to cover it so I can at least see if it will help.

Anyway, I just wanted to say I feel you. The fatigue really is the worst. I hate it more than the pain (which was also debilitating). I hope you find something to help you soon!

[susanep]

I also am so sorry you have to go through this. I hope in time the plaquenil helps you. I take it, but though it helps me some with other things, I still have the fatigue you speak of every day 24/7, and I even have the provigal to take. It does help me if going somewhere to be more alert, but not any more energy. That's just me though.

I run low grade fevers so much and it happens no matter what I do. That may have something to do with the continuous fatigue I have. I think I need to follow on that topic soon.

Let us know if something helps. It has been the worst for me with sjogren's and lupus, and yes I sometimes think I must be dying with feeling like I do.

Hugs,
susanep

[irish]

Susan, I haven't seen you around lately and can tell that you are really having a bad time of it. I am thinking you were put on methotrexate or something. I am wondering if you have seen any difference. There is also the drug cellcept that I have read helps some people with lupus.

Please know I am thinking of you and hope that you can rest and have some type of quality of life. Good luck and God Bless. Irish

[Deb 27]

eina, I noticed you also have hypothyroid. Double check that it's ok. Your TSH should be 1-2 if you are on the correct dosage of meds.I know for me sometimes, its hard to tell what is causing the fatigue. We've all been there. Maybe the neuro will be a good doc for you and get this fatigue checked out. Make sure you get good sleep as well. Maybe a sleep disorder? This disease alone will make you fatigued. I know just a small dose of prednisone would help my fatigue. Might help you until the plaquenil kicks in. I also found taking a multi vitamin helps my energy. Keep us posted.

[eina]

I am hypothyroid and I'm not convinced my levels have ever been great, but there are no thyroid doctors around. All the endos are diabetes specialists and no one is up to date on current info. I'm on Armour and my TSH is suppressed but my fT3 / fT4 are almost always low or barely within range. My levels dropped really harshly at the beginning of the year and I begged a dosage increase in March which did help, last they looked my levels were a lot better than before anyway. I have honestly given up on it, I think I really only have one fight in me right now so I'm focused on the Sjogren's. I'm hopeful that cleaning up my lifestyle and reducing inflammation will also help my thyroid as a side effect.

I started the Plaquenil last week but I have what I think is gastritis (again) and had to stop almost immediately. I think I need to fix my stomach a little before I can tolerate it, it's part of why I quit taking it after just a few months the first time. I am really frustrated about it but I am giving myself November to heal and restarting Plaquenil at the beginning of December. Is that a bad plan?

[warmwaters]

That sounds like a reasonable plan. If you having stomach issues, do take it after you've had something to eat. That may make it easer. I know some people also split the dose, with one pill in the morning and one in the evening (if your dose is several pills, obviously).