Fatigue question | Arthritis Information

So this is not making any sense to me. Last night I slept 10 hours, not continuous as I always wake up every 2-3 hours and go to the bathroom. But each time I go back to sleep. My usual total sleep hours though is 4-8. After being in bed 10 hours, I thought I would be refreshed. Didnt happen! I am more fatigued now then I have been for the past week (when the fatigue was letting up just a little). Does this make any sense? Do any of you have more trouble with fatigue if you sleep too many hours or is this probably just a random fatigue day for me? sometimes the more sleep u have the worst you feel at times, our bodies will never be able to catch up on all our lost sleep.

Be kind to yourself at all times

Winnie152011-03-27 21:50:13The "non-refreshing sleep" is a part of autoimmune diseases and is often asked about in the differential diagnosis (deciding which of a set of possible ailments it might be). I can sleep for Britain - would definitely get a gold medal! However - it varies from day to day and week to week and doesn't necessarily fit with you having done more the day before. It IS possible to feel sort of hungover if you sleep more than you have been used to on a regular basis but that is your body trying to readjust - several hormones your body makes vary through the day being higher at some times than others and if they are a bit out of kilter your body lags a bit behind. Think about how so many people need a week or so to adjust when the clocks change in spring and autumn (fall) or when they travel across time zones, it's much the same effect although you wouldn't think so.

Winnie's advice of be kind to yourself is very very good!

MrsE

daylight savings ends this saturday for us but at least we gain an hour sleep this time .

My son does mini stock racing, he's 15. He races out of town every saturday and its a 2 hr drive each way for us on really windy hilly roads, we leave at 1.30 pm and get home at 12.30 am , i can contribute most of my exhaustion to this one event every week. Its his last race this saturday and i'm not going, there is no way i'm going to put my body through that torture for anyone.. And when i look back i should have only gone every month not every 1 to 2 weeks - what a crazy thing to do to myself!

I'm being kind to myself more and more! and i'm not going to feel guilty about it anymore either....

Winnie152011-03-28 16:16:39 Thanks for the help MrsE and Winnie. We had our daylight savings time change already, so that might be part of the problem. The other part is my adjustment, I know. Today I started out with more energy, but pooped out by afternoon and the dreaded fatigue hit me. I remember, MrsE, that you said recently to try and get things done in the morning since this could happen.

And then my emotions vary quite a bit, either from the PMR or the Prednisone. i try and do things in the mornings too but realised i was burning myself out, so have to pace.

For example _ today i had breakfast then went back to bed for an hour, then got up had a shower and dried my hair ..then rested. then hung out washing and took dog for a wee tiny walk, hung next washing out then rested for an hour on my bed and another hour watching tv. washed the dog , bought washing in and rested for one hour. the next chore is cook dinner then rest for the night.

I've started making a protein shake everyday, it has all the vitamins and minerals our body needs and is so much better than swallowing pills, for me anyhow. I make mine with soy milk as i'm lactose intolerant, i put in 2 scoops of vanilla protein powder, and a banana or some blue berry sorbet, give it a blend in the blender and drink .. yum yum .

As for emotions, well i'm short tempered at the moment, and can't stand anyone whineing , i'm normally very tolerable but NOT at the moment. And sometimes i can't get the words out i want to say and this frustrates me, i sound like an idiot sometimes and in the end i don't finish what i've started to say because even i don't know what i'm saying

I don't know if it's the pred, PMR or GCA ..

Gosh i hope this isn't permanent or i'll end up in the looney bin

i did read about the connection of alzhiemers and GCA and put it straight out of my head

GCA sore today, whenever i eat or talk it flares .. computer upsets my eyes so only go on twice a day for 20 mins at the most.

2 more days til i see rheumy

Winnie152011-03-28 19:53:40Brain fog! Could be the PMR or the steroids - both do it! Steroids don't improve anyone's tolerance level and pain doesn't help! And the emotional bit - probably the PMR.

But all of them are overshadowed by the fact you are still getting used to having a chronic and incurable condition which is limiting your usual life style. It's a hard road but it does get easier as your symptoms improve and you are able to reduce the steroid dose. As you learn to manage it you will not only feel better physically but also in more control of your life again. It is a difficult lesson to learn.

Nanatjjj - yes do things in the morning rather than postponing them until later when you might not manage them. BUT what I probably meant was do the things you MUST first. If what you are doing in the morning is turning out to be too much and you are left totally pooped later, then you are doing too much at a time. Winnie's description of a morning sounds more like mine used to be in the early days - by the time I'd had a shower I had to sit down with a cup of tea before I could get my breakfast!

Nanatjjj - have sent an enquiry about your problem with the other forum. Rick who posts on here also posts there so nation of origin shouldn't be a problem. They maybe haven't got round to activation or it's slipped through the system. If you get a PM on here it comes up at the start of a session that there is one.

all the best to you both

MrsE

Thanks winnie and MrsE for the replies! I think I should probably try to structure my morning more like you do winnie. I probably try to do too much at one time. And yes, MrsE, I know I am in an adjustment period. I'm just not a very patient person and that has to change to as I cannot do the things that I used to do. Had my 6 yr old grandson for 2 days and then the 9 yr old today with him. They really were well behaved and angels and the husband did most of the running around needed. But it was pretty exhausting just having them here. Little things like having to go from one room to another to help one of them because the remote was not working right for the TV. Now that should not be a big thing, but when I am really fatigued, just walking those extra steps can wear me out. I love having them, but was glad when Dad got home today and picked them up.

My sister just started a new diet from France called the Luken diet. She wants me to try it. Not enough emotional energy right now, but I am reading her emails about it. Guess the book does not come out here in the US until mid-April.

be careful about adjusting your diet too much at the moment nantjj .. i think doing things like removing excess sugar is a good thing but any major change in your diet could upset your whole blance and make things worse for your illness. Moderation is the key, fresh fruits and plently of vege, water, wholegrains, 2-3 servings low fat dairy, and 120 gms meat is a good daily guide.

My day went to crap today, started off well but didn't sleep that good last night, then decided i would vaccum ..bad idea!

Have had this non-releasing cramp in my right cheek, neck, shoulder into arm down to hand all afternoon .. muscle relaxant hasn't helped at all. teeth are aching now.Of course my mood went down hill and i was snappy and grumpy at miss 17 ..

Specialist appt tomorrow .. have a two and a half car ride each way , will be good to get back with some answers.

Nanatjjj - When you have a chronic ailment and are used to being "just the two of you" even the upheaval and noise of adult visitors can be exhausting. In fact, one one of the worst things ever introduced to hospitals (from the patient health point of view) was the extended visiting hours that are now common in the UK at least. Some visitors are sensible, most aren't and stay for ages (having gone to the effort of getting there) and some visitors and patients feel obliged to have the available time filled for them! I have seen hordes or family arrive to see grandma and the kids are bouncing all over the place - a hospital ward is NOT a playground! Result - an exhausted patient.

I was well under 50 when my grandson was born and still fit - no PMR yet as far as I knew. But after a couple hours of him I was on my knees

Winnie - don't need PMR to be grumpy at a miss 17!

MrsE

Thanks. I am probably going to look at the Weight Watchers plan again. I have lost on that plan and not had any health issues. It is pretty similar, winnie, to what you recommended.

Good thing I dont have a 2 year old grandson now. I would never be able to keep up with a 2 yr old.

So pleased you are starting to feel better,

MrsE

Thanks MrsE. It will soon be nice enough for me to sit outside. I have a nice backyard and sit out on the patio area and read in the spring and summer. I am looking forward to it.

Ankles and feet edema again. I had just about gotten rid of it, but yesterday it came back with a vengeance. Already stopped the salt shaker. I cant remember if this might be related to the PMR or the Prednisone or both! Hi Nanatjjj

As steroids can cause oedema (fluid retention), as soon as I commenced on Prednisolone I included known diuretic foods such as watercress, celery, asparagus and parsley regularly in my diet. I believe an added bonus has been that after 4 years going from 40mgs a day to the present 1mg, I only saw a weight gain of about 6lbs and I have recently managed to lose 7lbs (one happy bunny!).

You are very wise to consider stopping the salt shaker. Because I have had only one kidney since my early teens, I have always been aware of the need to keep salt in my diet to a minimum, for instance I never add it to either my cooking or at the table. When I was expecting my son, I was advised by a hospital dietician to avoid salt altogether - I remember the first boiled egg I ate without salt was tasteless.......nine months later when I added salt to a boiled egg all I could taste was the salt not the egg!

Perhaps you can research other diuretic foods, oh and by the way it's obviously important to drink plenty of water. Hope my experience will help with your oedema.

Hi Celtic,

Hi again Nanatjjj

Do you eat plenty of oily fish which is excellent for arthritis? I also have osteoarthritis in several joints but it seems to have been under control for a very long time and I put this down to my 3 servings of oily fish a week. An added benefit is the Vitamin D the fish contains especially if when you eat sardines you mash up the bones and eat those as well.

I have done quite a bit of testing out of foods that may worsen my pain and have discovered that processed meats are definitely a trigger for me: for instance it seemed that after Christmas I would have worsening symptoms every year and I pinned that down to the large ham we always purchase over Christmas and ate almost daily for a couple of weeks afterwards - apart from enjoying a small amount on Christmas Day I now leave the rest to my husband and son and I have given up all other processed meats and most foods. Very bizzarely several years ago when I was suffering badly from RSI in my hands another trigger proved to be Magnum ice creams - goodness knows what the actual culprit in the ice cream was but they are loaded with all sorts of additives.

It's good that you are walking even if it is only for 6minutes - in my early days of severe PMR and GCA I made the daily walk a priority even if I could only manage 5minutes and very gradually I was able to build up.

Yes, do increase the water - it has so very many health benefits.

Lots of good luck wishes.

Either I am learning to pace myself better or I am having a slight improvement in the fatigue. Not sure which it is or maybe both. I can see improvement over last month, but still having up and down days. Bought a shower chair, which is helping conserve my energy with that task. Hoping to be able to travel by car in about 2 weeks from now. Hi Nanatjjj

Good to hear that at least the fatigue is easing. The amazing thing with PMR is that even when you have quite a long period of time without sudden fatigue taking over your life, it can still hit on the odd occasion and take you by surprise. At least it's a gentle reminder that PMR is still lurking and not to really overdo things. If there is only one thing that PMR teaches us, it is patience.......needed by the bucketload! but well worth learning in the long run.

As for the shower chair, a couple of suffers over on the UK site have related their good experiences with one of these, one even putting a plastic garden chair in the bath to help!

Hope the foot and ankle swelling is improving - when you feel able and if there is a local pool that is warm enough for those inflamed muscles, even floating around on your back will help to relieve the swelling this proved good advice by a Dr whilst I was on holiday in the Med when my ankles swelled horrendously from the flight and the heat.

Hope the improvement continues for you.

Hi Celtic,

Thanks for the reminder about the fatigue sneaking up on us. I did have a day when it seemed worse again. It is still bad, but I think I am learning to adjust better too. Got the shower chair and it is really helpful. Only on this forum would members appreciate me saying I can now dry off without having to ly down first! The chair helps me conserve energy. It was really useful yesterday when I also washed my hair in the shower. That had been just about wiping me out before I could even get out of the shower to ly down. Now my biggest challege is to get some weight off, which I know will help everything. Started today to increase my protein some to balance out my blood sugar, drink lots of water, and then maybe after a few days of that, get back to counting my WW points. That is the system that has helped me the most in the past. But it is hard to get back on it when I have been eating Easter candy! Oh, and the ankle/foot swelling is better, not gone, but about 3/4 better.