Sleeping 16 hours a day and can't get to work

Hi all,

I've been sleeping 16 hours a day, so fatigued and can't get to work. I've had only one Remicade infusion, so I don't expect that to start working for awhile. I need to get back to work. Any advice? Not in much pain.

I dont really have any advice but want you to know, I was there and hope it gets better Hang in there.

Hi Never give up hope,

Thanks for replying. How long did it take you to get over the extreme fatigue and get your energy back?

I wish I had a solution to this. I've been having real trouble with fatigue as well. It seems as though you would expect that after a few infusions, that the fatigue would let up some.

Hey sitting here now taken my remicade . I could tell it was time for it the last week or so I have been so tired and sore.
Don’t know really how long it takes been on remicade for a year and a half. I can tell an improvement the pain has got better but suffer with mouth sores and fatigue and soreness mostly from enthesitis .had mouth sores with humeria and enbrel. Seems like I get something under control and then I notice something else.

I do not know if this is your problem but I thought I would mention it anyway. Depression can make you want to sleep and sleep. Common with PSA as it is not easy coming to terms with this disease and learning how to cope. Then there is the side effects of meds and finding the meds that work. Depression is something that is very difficult to get over on your own and needs help with medication and therapy.

My only other suggestion is to make sure you eat as healthy as possible to boost your energy levels. Multi vitamin capsules can help, but personally I prefer to spend the money on good food as it is much more pleasurable eating good food than popping down a capsule and all the excesses that our bodies don't need flush down the toilet. Avoid processed foods, fats and trans fats, sugar, salt and limit red meat. Use honey to sweeten and herbs to flavour food You can't go past the 3 fruits and 5 vegetables a day. Whole foods are much better than juicing. Juicing is a good way of getting more vitamins into your body.

I hope this helps, it will not harm you.

Thanks everyone for your thoughts and suggestions. Always appreciated !

I have had good results with virgin coconut oil. It can really give you a long lasting burst of energy. I usually mix 2 table spoons in with my slimfast and a banana and into the blender it goes. Yummy breakfast and the energy boost lasts all day.

Thanks Alaska miner. I'll try it.

alaska miner said:

I have had good results with virgin coconut oil. It can really give you a long lasting burst of energy. I usually mix 2 table spoons in with my slimfast and a banana and into the blender it goes. Yummy breakfast and the energy boost lasts all day.

Hi Frances,

I stared treatment in October my fatigue was really bad October through January. Once we found a good combination of meds, I started getting my energy back. Im on my way, though still not free fatigue or aches and pains but better.

Frances said:

Hi Never give up hope,

Thanks for replying. How long did it take you to get over the extreme fatigue and get your energy back?

My rheumy said my labs don't support my extreme fatigue. He said my inflammation levels don't support my need to sleep 16 hours a day and suggested I get a sleep study for sleep apnea. So, I'm making an app't for a sleep study.

Frances- It's not a bad idea to get a sleep study. That said, you pointed out the doctor said, "my labs don't support my extreme fatigue." Well my labs don't support anything. Labs don't tell the full story, and relying on labs only is not sufficient. I have never even had a sed rate that was anywhere near abnormal, yet clearly have inflammation.

I completely agree ! I think everyone's body reacts differently. I'm going to do the sleep study if for nothing else to show the rheumy that I don't have a sleep disorder and to maybe get some meds to help to increase my energy - maybe plaquenil. I have good insurance that will cover the sleep study expense.

Hi, I also have extreme fatigue , as well as Psa, I have chronic fatigue syndrome (me) and they keep overlapping one another, my rhumy says you also get fatigue with Psa, I’m in a bad flare at the moment so very tired, listen to your body and rest if need be, hope u feel better soon

Thanks sjg

sjg said:

Hi, I also have extreme fatigue , as well as Psa, I have chronic fatigue syndrome (me) and they keep overlapping one another, my rhumy says you also get fatigue with Psa, I'm in a bad flare at the moment so very tired, listen to your body and rest if need be, hope u feel better soon

I have been told I have fibromyalgia along with the PsA. My doc says the fatigue may be the hardest thing to deal with and to cut myself a break. I have contant pain ( differs from day to day- but always there). She said pain also makes you tired. I had thyroid CA so am on synthroid so have to watch my TSH closely. Check your thyroid . Maybe and see about vitamin d levels. Might be a contributing factor. Be kind to yourself. You have a legit reason for being tired do not beat yourself up.

Have they checked your thyroid level. I just had the test done and I am low. Following up with doc next week for it. I was very tired and fatigued and assumed it was from the psa, though my inflammation markers are good right now. The thyroid just had to add its 2 cents.

I had Graves' disease, a thyroid auto immune disease 15 years ago and they gave me an iodine pill with radiation to destroy my thyroid. I've been taking synthroid since and get my thyroid levels checked about every 6 months.

Obvious I know, but are you taking your synthoid properly? Especially allowing at LEAST and hour in an empty stomach, and maybe longer if you are in "slow mode?"

And as much as I hate to say it, fatigue can become a habit (even when there is a reason) a refferal to rehab may not hurt either. For some folks the fatique stays around even after the disease is under control. Through tricyclics and phased exercise rehab, things cna come back. Remember this disease has as much effect on your body as a traumatic accident. It isn't a matter of a handful of pilss a few IVs and off to the races. It also requires hard and sometimes painful phisotherapy.

Thanks tntlamb. I do need to remember to take the synthroid on an empty stomach and I've already scheduled physical therapy.