Is anyone else tired ALL the time. I'm on methotrexate right now and for a while enbrel and metho. The tiredness was a lot worse with the enbrel, but it helped with the pain. It's hard to function when I'm in pain and exhausted all the time.
Exhaustion is one of the worst parts of PsA for me. Especially when I have motivation AND exhaustion. LOL Have you had your thyroid checked? Vitamin levels checked (B6, B12, D3)? It's not uncommon people with PsA to also have thyroid issues as well as too low levels of one or all of the vitamins I mentioned. I hope you find something that lifts your energy levels soon!!!
I'm fatigued most of the time, and usually lay down during the day for a bit. My thyroid levels are just fine. I had a brief spurt of energy when I was on a full dose of leflunomide every day, but then I was spending an hour or two running to the toilet every day. So I'm on a half dose, somewhat fatigued, but not spending all day in the bathroom.
Hi Cissy. I'm also very fatigued all the time. I'm less fatigued after having my 4th dose of Remicade. I was on methotrexate for one month and it made me very tired. I'm seeing a new rheumy on Friday and going to ask for script for plaquenil because it helps reduce fatigue. My sister takes it for Lupus and it has helped her a lot. I've also changed my diet. I'm eating much more protein, fruits and veggies and taking vitamins and supplements.
I get very fatigued. Definitely get your vitamin levels checked, thyroid, iron, etc. I found I was low on B6, B12, D3 was VERY low, and iron for me is always borderline anemia. When my meds work, I have energy. When my disease is active, I am very physically fatigued. Before my vitamin / mineral stuff was straightened out, I had some days where I felt too exhausted to lift my arms or legs.
I have to subsist on caffeine to get through my day.
Thanks everybody. It’s nice to know its not just me. Ill add some more vitamins and talk to dr next week. I’ve mentioned it before. Sometimes it feels like the Drs. Don’t really listen.
Fatigue was one of the things that told me something was really, truly wrong. (The early morning Frankenstein impersonation was the other.) Neither of the rheumies I have been to have wanted to talk much about fatigue. Maybe because it is entirely subjective, maybe because so many other things can cause or contribute to fatigue, they just don't wanna go there.
Humira lifted my fatigue; too bad it had so many negative side effects to go along with. I did not have the same effect from Enbrel, but I was only on it a short time before ending up doctor-less. My thyroid levels run on the high side and I am on vitamin D and B12 supplements, so none of those things contribute.
Living with chronic pain is tiring in and of itself. I have had chronic pain problems for over 25 years, though, and this breed of fatigue is a whole fresh new hell.
Cissy, I've heard many people complain that their rheumy doesn't listen to them about their fatigue symptoms. I don't know why they don't address it.
I am having this problem right now. I'm extremely tired, even with plenty of sleep. I was going to post about this, as well. I can't seem to wake up or have any energy. I will talk to the rheumy on the 11th. Something has to give, I'm starting to feel the inflammation flaring up and psoriasis is coming back since I stopped taking the medrol. I had more energy taking it then without. I know steroids have long term effects but I'd rather feel better than care too much about the side effects.
I felt like I was waking from a coma for a few months and was sleeping 16 + hours. My reuhmy wouldn't address it. He said my labs didn't support me being so tired. I better now on Remicade, but still fatigue easily. Seeing new rheumyt tomorrow.
Its not so much that it is subjective, its that it is a part of the disease aa big part. Once the labs have been done, the next step is a sleep test. There is a strong body of evidence this disease also has sleep disorderds involved with it. After all those things are done there is only one thing left that will help (well two) use of a low dose tricyclic at night (25mg amitriptyline) and regular exercise periods daily. Occasionaly welbutrin helps. Its not caused by meds (nor generally helped by them)
It truly is a "personal problem" Some GOOD cognitive therapy after everything else is done has helped almost everyone I am aware of.
Thanks for all the replys. I've started taking iron, which is helping a little. I already get regular exercise.I will talk to my Dr about a sleep study.
Thanks again for the support.
YES YES YES!! My lord the fatigue is almost harder than the pain to deal with sometimes. There are days I can't even think straight or keep my eyes open and end up sleeping for most of the day. I've also just been told I have Fibro and I know fatigue is a symptom of that also, so I have not chance lol. I had an iron infusion a couple of months ago. I had my fingers crossed that it would help with my energy levels and keep the fatigue at bay, but unfortunately it hasn't helped.
That’s exactly how I feel. I sit at work and fall asleep at my desk. I have been taking a lot of sick days so I can go home and sleep. I’ve requested a sleep study and the Dr is starting me in remicade. She says it may help. I hope it does… If so ill let you know. Hope you find a solution.
My fatigue was just unbearable. I felt like the Enbrel really helped it so much. I started going to a water aerobics class and it really boosted my enthusiasm for life, even though some days I was spent afterwards. I know what y’all mean about sleeping almost all day. At my worst I would hit my zombie phase around noon and I could sleep til 4:00. I hated it and felt myself getting very depressed and withdrawn. At least with the water aerobics I have that little bit of time in the water where I am completely free of pain and weightless!! Then I feel like I’ve earned a rest lol. It has improved my energy level also. I have to be careful, though because I tend to try to do everything just like the teacher and … She doesn’t have PsA. Then I suffer later. Fatigue > pain!!
I focus on eating very healthy food and this helps with my fatigue and now only occasionally do I get fatigued Cut down or cut out refined sugars and saturated fats. Do not use artificial sweeteners as they can be carcinogenic. You can use honey or maple syrup. I eat 5 veg and 3 fruits daily in a variety of colors. No preservatives or chemicals in my foods which means many manufactured foods and you prepare all your own food. Make sure you eat plenty of green leafy vegetables. I do know that taking a multi vitamin does not work anywhere near as well but it is better than not getting all your vitamins and minerals your body needs.
Gentle exercise every day and you can do so many exercises sitting in a lounge chair. Use cans out of your cupboard as light weights. You can do lots of stretching exercises on your bed or on the floor. Use a towel to lift your legs if it is too difficult for you. It is better if you can get out in the fresh air and walk or join a Tai Chi group.
To help you sleep, try awarm bath at night, and if you can have some relaxing music playing with only candles. Avoid bright lights before bed time, so dim the lighting down for an hour or so before going to bed. Then a mug of hot milk which you can flavour with vanilla or malt extract (not chocolate as chocolate can stimulate). Put some lavender on your pillow, it might help you sleep better.
If you are having trouble getting to sleep, learn how to use relaxation techniques. Relax your body slowly in your mind from your toes to your head and make it feel either as heavy as lead or as light as a feather which ever works for you. Make sure you lay flat on your back with arms beside you and do not cross your feet. Pack up all your worries and lock them away using your mind. Then take your mind on a journey to a peaceful place, it could be near a waterfall, or a rain forest or a grassy field covered in wild flowers. Every step of the way is done very slowly. One I do is a magic carpet ride over the city and over a tropical forest to the beach. I lay down on the warm sand and listen to the waves rolling in and tell myself how relaxed I feel and how sleepy I am. Hope this helps!
Bella, I love your ideas. I also changed my diet and was able to nearly completely eliminate my chronic migraines by cutting out artificial sweeteners (I grow my own stevia) and by reducing gluten and eliminating dairy. Summer is a much easier time to include fresh veggies but I have made a point to eat more every day. I do sleep much better on the days I get some exercise, bit I I overdo it at all my muscles spasm and jerk. Then I can’t sleep at all. Your dr can prob prescribe a sleeping pill or muscle relaxer to help you rest or even try an OTC sleep aid. I usually give myself a set time to fall asleep then get the sleep aid so I don’t get frustrated.
I love all your ideas ! I don't like to cook, but slowly cooking more and eating healthier, bit by bit.
bella said:
I focus on eating very healthy food and this helps with my fatigue and now only occasionally do I get fatigued Cut down or cut out refined sugars and saturated fats. Do not use artificial sweeteners as they can be carcinogenic. You can use honey or maple syrup. I eat 5 veg and 3 fruits daily in a variety of colors. No preservatives or chemicals in my foods which means many manufactured foods and you prepare all your own food. Make sure you eat plenty of green leafy vegetables. I do know that taking a multi vitamin does not work anywhere near as well but it is better than not getting all your vitamins and minerals your body needs.
Gentle exercise every day and you can do so many exercises sitting in a lounge chair. Use cans out of your cupboard as light weights. You can do lots of stretching exercises on your bed or on the floor. Use a towel to lift your legs if it is too difficult for you. It is better if you can get out in the fresh air and walk or join a Tai Chi group.
To help you sleep, try awarm bath at night, and if you can have some relaxing music playing with only candles. Avoid bright lights before bed time, so dim the lighting down for an hour or so before going to bed. Then a mug of hot milk which you can flavour with vanilla or malt extract (not chocolate as chocolate can stimulate). Put some lavender on your pillow, it might help you sleep better.
If you are having trouble getting to sleep, learn how to use relaxation techniques. Relax your body slowly in your mind from your toes to your head and make it feel either as heavy as lead or as light as a feather which ever works for you. Make sure you lay flat on your back with arms beside you and do not cross your feet. Pack up all your worries and lock them away using your mind. Then take your mind on a journey to a peaceful place, it could be near a waterfall, or a rain forest or a grassy field covered in wild flowers. Every step of the way is done very slowly. One I do is a magic carpet ride over the city and over a tropical forest to the beach. I lay down on the warm sand and listen to the waves rolling in and tell myself how relaxed I feel and how sleepy I am. Hope this helps!
Another thing that can make us feel tied is due to the lack of water in our bodies. 80% of people are walking around dehydrated. The recommended amount of water intake per day is 8 x 250ml or 8 oz glasses of water a day.
Tea, coffee, and alcohol do not count It actually means you need to drink more water if you drink those as they work like a diuretic and add to being dehydrated.
You can tell by the colour of your urine if your dehydrated. It should be almost clear and very pale - not yellow or bright yellow.
I struggle to drink this amount myself every day in the cooler months. Add a dash of lemon if you don't like plain water.
It is very worthwhile to make sure you drink a couple of glasses of water before a blood test to plump up your veins to make it easier for the nurse to find the vein.
hi Cissy, please make sure you are getting enough Iron in your diet. That can sometimes be an issue for people. just a thought :)
Louise