RA and Fibromyalgia - ugh

[KerenChaya]

I was diagnosed in April. For me, the pain and inflammation had been dealt with easily with steroid shots in wrists and ankles and hql (plaquinel here in the US). Still, I'm so very tired. Rhuemy added fibromyalgia to the list and 20 mg Prednisone. I'm now almost done wroth the 20 day titrated round. I feel human again! And nervous that the exhaustion will return. If you are ra and fibro, What works for you?

[Ali_H]

Hi Keres,

I've no immediate answers for you but wanted to say welcome to the site and hopefully someone with useful experience will be along soon.

I have RA and drinking loads of water definitely helps my fatigue levels as does avoiding too much sugary stuff. I teach full time so sleep is important and I go to bed rediculously early in the school week... I have a meditation track that helps me drift off and I have it quietly on a loop all night which helps me get back to sleep quicker when I wake in the night.

All the best

Ali

[KerenChaya in reply to Ali_H]

Hi Ali,

I'd love to know which meditation tracks you are using. I'm still experimenting with them and haven't yet found one that feels right.

Me too! In bed to read at 9pm. Generally asleep by 9:30. And if Friday or Saturday night finds me home by 10, it feels like midnight!

As a home brewer (one of my favorite hobbies!) I used to consume 3 pints more than a few times a week. No more, those days are long gone! These days finds me with only one half pint a couple of times a week. Drink of choice these days is a bit of fresh pomegranate juice with water (1-4 ratio). Maybe 70 oz per day.

Staying hydrated matters!

[nomoreheels]

Welcome to the NRAS site Keren. It's a valid question & one not easily answered I'm afraid! I don't have fibromyalgia, I have RD (Rheumatoid Disease) & OA (Osteoarthritis), diagnosed in 2008 & still get bouts of fatigue often for no apparent reason but when it happens I may as well be wading through treacle!

Well, thinking logically disease still being active will certainly affect you, I take it you're on 400 mg HCQ or if not maybe an increase to 400 mg could be an option? Or maybe it's because you're nearing the end of titrating your pred? The next obvious thing is if you've been overdoing things, especially as the pred has given you relief, things like catching up with housework can really take it out of you if you've taken advantage whilst feeling human again! Have you been getting enough restorative sleep? Prior to being awarded proper sleep it could really affect my mood which in turn messes up the day because I was feeling tired, it's a vicious cycle. Diet, stress, fearful of the future? It can all add up. I think that's enough to chew through don't you, so I'll stop there in the hope something rings a bell.

You could always work through your treatment plan with your Rheumy, see if anything is contraindicated med-wise?

[KerenChaya in reply to nomoreheels]

Haha! Wtf is restorative sleep?!

I need about 9 hours in a 24 hour period and that includes a nap. While I sleep well and dream peacefully (usually), I still have to claw myself to wakefulness and am generally still so very tired, fatigued, and downright weary.

Future looks bright. Have a new dream job of working for a non-profit at 30hrs a week that feed my soul. Hoping to move closer to work and having a bit of a blast looking for better digs.

Thanks for the suggestion of moving to 400mg HCQ. I'll check it out at my next visit

[Ali_H]

Hi Keres,

Sorry for the delayed response. I listen to various meditations off the Omvana app as they can go on a loop and some are free. I also listen via iTunes to a breathing meditation by a chap called Douglas Crawford which I really like (the track doesn't have talking on it) and then I sometimes use an app called bhudify but that can't be put on a loop.

I hope that helps

Ali

[KerenChaya in reply to Ali_H]

Thanks Ali!

I had forgotten about Omvana, I need to reload it onto my new phone. The others I haven't heard of and look forward to exploring. Thanks!

[pauluk60]

no diagnoses as now so no meds except painkillers and injections knee but recognize all symptoms especially that feeling its lurking behind you scared of going out or overdoing it karen horrible bad flare month ago still shakey these seem to getting stronger