Chronic Fatigue

OMG I feel exactly the same. I am always wanting to be asleep always always - I love my bed and never want to be out of it. I am on meds and feel amazing one moment and horribe the next so unpredictable.

My doctor is putting me in hospital for a week on Monday so I can have a rest pretty much, people do not know what it is like, work people dont get it. this guys RA guy he has a good kinda like pamphlet it is good to show to colleagues. Just google RA guys 60 second guide to RA

Hope you feel better soon

take care

Sarah

Dear starhill,

Your story hit home with me as well.  I am in my first year of RA and Fibromyalgia.  I think the fibromyalgia went undiagnosed for 2 or 3 years.    You may also have fibromyalgia or chronic fatigue syndrome that is undiagnosed.  In my experience, my rheumatologist doesn't even address my fibromyalgia even though he diagnosed it, he only focuses on the RA.  My primary doctor doesn't believe in fibromyalgia, even though my mother has been on disability and SSI for years with her fibromyalgia.  Many doctors don't believe in fibromyalgia because no definitive test exists for it.

My RA came on last Sept. and I could not get enough sleep.  I barely made it until 7pm, after dinner and homework with the kids and then crashed for the night until 7am.  That is 12 hours and I would wake up exhausted and like a truck hit me.  I want to give you hope because finally in April I went into remission.  I take Celebrex, Sulfasalazine and Plaquenil and potent pain meds around the clock.  It took 2 1/2 months for the meds to kick in. We had to push the doses up but it worked.  Before I knew it, I was awake until 9pm, then 10 pm.  Getting up is easier although still don't feel entirely rested, I am no longer napping in the afternoons.  My morning stiffness went from 2-3 hours down to less than 1 and the intensity of the stiffness is less than half.  My pain levels are way down too.  Pain causes a lot of exhaustion. 

My advice to you is this:

1. get your pain levels under control-you won't feel rested if you don't.  You don't mention any anti-inflammatories or pain meds.  Ask, Ask, Ask!!!  Pain, anxiety, and fatigue are a vicious, vicious cycle.

2. If you are just on Plaquenil and still feeling this bad it is not enough.  Combination therapy added in a step-wise fashion is best.  Ask you Doctor to add the next agent, you are ready for it.  To be honest, Plaquenil alone is a weak agent,  not a bad first start as it is inexpensive and low in side effects but also low in efficacy-especially as a single agent therapy.

3. Can you reduce your work hours? 

4. You must stop immediately with the meds that are "legal street speed"!  Propping yourself up with over the counter stimulants such as diet pills and Sudafed.  These  are very dangerous when taken together and have serious cardiac effects and increase blood pressure.  You are essentially taking "uppers" (amphetamine-like drugs) to keep yourself going.  Plus you are adding to your fatigue as will crash when they wear off.

5.  Consider an anti-depressant such as Cymbalta, it treats depression, fatigue and chronic pain and is approved for fibromyalgia pain.  Depression causes a lot of fatigue.

Yes, RA causes incredible mind-blowing fatigue and yes, it is worse when your joints are flaring but it can be managed.  Use your energy like a miserly bank account.  Learn to say no, get your rest.  Eat well and drink lots of water.  Good supplements are vitamin D, Fish Oil, Coenzyme Q10, a good basic multivitamin and a good B-complex.  If you can just achieve some level of remission the fatigue is one of the first things to improve. 

Good luck to you and let me know how you are doing!!  Hang in there-you can feel better.

Cheers,

Jamie

Jamie  pretty much covered everything I was going to say, so I'm just going to pipe up with telling you that no, this isn't normal. RA does come with a substantial fatigue factor, especially when it's active and to me it sounds as if your RA is active or you wouldn't be this tired.  You need better treatment, either by combination therapy with another drug in addition to Paquinil or a completely different medication (a booster dose of prednisone may help you, as well) - you may want to have a chat with your rheumatologist about the Biologics. As well, I would suggest that you see your primary care physician about a check up, just to make sure that there's nothing else going on.  You may also be depressed - I've found that when I have poorly controlled pain or active RA, I get depressed - sleep disturbances (either too much or too little) are common symptoms of depression. Again, I would suspect that this may improve when you get your RA suppressed and good pain control, but you may want to think about a mild antidepressant to help you through this rough patch. 

Jamie also mentioned fibromyalgia, which comes with an even bigger whopper of chronic fatigue - check out the fibromyalgia area of our chronic pain site to see if anything there rings a bell.  As well, possibly reducing your work hours as an accommodation to your present health issues may be something you want to consider - you are legally entitled to receive accommodation under the Americans with Disabilities Act and you can read more about that here.  You may not need this kind of accommodation permanently, but until you've gotten everything back on track, it could be a tremendous help to get your healthy again. When I used to work in an office, I worked 80% all full-time hours and it enabled me to perform well without ruining my health.

Lastly, if your rheumatologist is not listening, get a second opinion if you can (for tips on recognizing a good doctor, click here). If you live in an area where the choices are limited, I would recommend crying in her office. I hate crying in front of other people, but occasionally, I have had to because things were so bad and have discovered that it was only when I cried that I was taken seriously and my doctor trotted out all kinds of other treatments. Be honest with your doctor. Tell her exactly how the RA is limiting your life. 

Good luck. Please let us know how things go?

Hi, I won't add a lot to what the others have said. I too have problems with the fatigue. I can't do as much as I used to. I have had this almost four years now. I think I slept the first two years almost constantly. I would come home from work. Get dinner and then go to bed. That was all I was able to do. I have to agree with the multiple meds though too. I am on methotrexate, Plaquenil, and Enbrel. Plus Cymbalta and pain meds. Hope you to get feeling better. I am finally starting to get a handle on mine. My rheumy has been kind of slow going but now seems to be getting a handle on things for me.

Oh yea, I am also on Lyrica. It has just recently been okayed for fibromyalgia. I also see a chiropractor. He is really understanding and helps some.

Anyway, as I said hope you get to feeling better.

Julie

I am so sorry that you are feeling so tired, but more so because you aren't fidning validation with your doctor.  It is concerning that the PA isn't acknowledging fatigue as a symptom of active RA.  I've been diagnosed for less than a year, but can say with a certainty that when my joints hurt and I'm exhausted in the afternoon like you describe, the disease is active.  I usually get pretty low, too, because I feel like I'm losing time.

Lene is right on about crying in the doctor's office.  At Christmas time I broke down when the nurse was taking my bloodpressure, right at the beginning of my appt.  Since then the doctor and his nurse are very kind and cognizant that I am one of those patients that try to "gut it out" when in pain.  A ten day course of prednisone knocked out that flare and he has even given me a ten day course to have on hand.  He also prescribed ultracet, which isn't heavy-duty, a muscle relaxer/acetominophen combo that helps me more than an over the counter anitinflammatory.

Sometimes w ehave to push to get what we need, but it is so much better once the doctor gets to know you.  Can you make an appt. with him/her the next time?

I'm pulling for you and look forward to when your remission happens.

So sorry you're having such a rough time.

Methotrexate sucked the life right out of me, I no longer take it.  I felt better immediately and had more energy.  Maybe this has something to do with the medication your taking?  I'm currently on Enbrel and I've felt more like my old self.  Be upfront and honest with your doctor, hopefully he'll find the root to your fatigue.

God Bless!!

Rheumy ordered Orencia.  It took my insurance company a while to approve so he put me on Plaquenil and Lodine and increased the metho to 6.  TProbably 3 months later I started orencia.  Prior to the orencia though, I slept so much and so deep it was like I was in a coma.  My husband would literally feed me meds while I was asleep because I could now wake up.  I literally could come home from work Friday evening and basically sleep until Sunday afternoon.  I would wake up long enough to use the restroom and go back to bed.  Hardly eating anything (didn't lose a pound though).  During the week, I would get so tired 7 p.m. I would get evil if I couldn't go to bed.  Anyway, after dealing with this extreme fatigue, for 2 years, I decided this January to stop the lodine and plaquenil.  My swelling increased, but the EXTREME fatigue subsided.  When i went to see my Internal Medicine doctor, we discussed this.  She said that she thought perhaps the Plaquenil was making me tired (I couldn't hardly walk up and down stairs w/out being out of breath).  She looked up the side effects and was pretty sure about it.  When I went to my Rheumy, we too discussed the fatigue.  He agreed that perhaps it was the Plaquenil and understood me stopping it.  I still have bouts w/the extreme fatigue, but I can walk up and down stairs and don't feel like a truck hit me.  In fact, previously I would be late for work probably anywhere from 30 mins to 4 hrs. everyday.  Now I'm probably late a couple days a week and only by 2 hrs. and usually when the weather changes (especially if it rains).  I get really tired when it rains.  Thursday, I was taking my parents to the doctor and feel asleep driving, missing my exit (needless to say, it rained today!).  Anyway, talk w/your doctors about the Plaquenil.  While I still have fatigue, it's no where near what I experienced w/the Plaquenil.  Now I must admit, I have a lot of pain, but I have resolved to the fact that i will live with some degree of pain the rest of my life.  I only take pain meds when I'm about to be in/or am in tears (scared to get hooked).

I do want to also mention that while I am experiencing more pain, we think it's perhaps because the Orencia is no longer working for me.  I've recently moved to Enbrel and am hoping that in the next couple of weeks I'll feel better (already done 4 shots).

This is just something to think about!