Fatigue

towyview

Hi all,

I have had RA and OA for many years and after going through the obligatory list of meds I have been on Enbrel for the last 6 years. Although these injections have turned my life around (Ifeel sure I would be in a wheelchair by now without them), I feel so utterly exhausted ALL the time. I am 56 years of age and feel like 96. I get up in the morning and feel like going straight back to bed. If I don`t do my few bits of housework in the morning then there is no hope for the rest of the day. I spoke to a fellow sufferer last week and she told me she felt the same and had been diagnosed with Pernicious anaemia. Does anyone else feel like this and has anyone else been diagnosed with this anaemia. When I mention it to my Rheumatologist or Rheum nurse or GP all I get told is that it is a symptom of RA. Can someone advise me.

Dorothy :roll:

dreamdaisy

If you are anaemic it should be picked up on your blood tests: how often do you have them done and is an FBC done regularly? (FBC = full blood count). Don't forget that arthritis makes you tired too! Anaemia was spotted in me, I had six months of iron tablets then all was well again, FBC has been fine ever since. I don't know what energy is tho. It's been years since I had any of it. I wish you well. DD

towyview

Hi,
Thanks for that. I have my bloods done regularly and they seem to be ok.
I tend to monitor them myself and compare with previous ones, just in case the doc misses something. Do you know anything about the B12 blood test ? I don`t get tested for that and my friend tells me the result of that could indicate reasons for fatigue and lack of energy .

D

dreamdaisy

I think you should ask your GP about it, I know that B12 shots are given almost as a matter of course in the US (the stuff you learn from watching telly!) but as to over here, I have no idea. DD

tillytop

Hello Dorothy

I am sorry that you are struggling so much with fatigue.

I guess that, given that fatigue is part and parcel of RA anyway and that there are probably a number of other things which could cause the fatigue, it's one of those things which is hard to pin down. I'm having similar problems with fatigue at the moment so I do understand.

If this is a fairly recent thing for you, it would suggest that something has changed and it might be worth speaking to your GP for advice - and mentioning pernicious anaemia to see if he thinks it would be appropriate to test your blood for B12 levels. The B12 blood test is a straightforward test which your GP can do for you but it is not done routinely as part of the normal RA blood tests.

Tilly xxx

towyview

Hi Tilly,

Thanks for that, it`s good to know I`m not the only one feeling like this. I`ve felt like this for a long time but I guess the more you think about it the worse it gets and its so frustrating not being able to do things like I used to. I know I`m 56 but I thought I had a few more active days ahead of me yet !! It`s more frustrating because people don`t understand and just think I`m being miserable.
I`m glad you`ve heard of the B12 blood test, I shall certainly look into it.

Thanks
Dorothy x

dreamdaisy

Oh we can all emapthise with the age thing, I am currently 51 (tho not for much longer) and I greatly envy my ma-in -law: she is 90, occasionally uses a stick, can still vacuum thro the house once a week, can still bake cakes, do proper dinners etc, gosh that must be nice. I do what I can and have learned not to fret about the things I cannot manage. I also know some very good short-cuts so people think I have been busy when I haven't. Needs must! DD

tillytop

Hello again Dorothy

Yes, extreme fatigue is horrible isn't it - and as you say hard for others to see. But there are lots of us here in the same boat so you are definitely not alone with it! At the moment I have days when I can do more and days when the tiredness completely overwhelms me. I do my best to pace myself by doing a task, then stopping, then doing something else and stopping again etc. And I am trying to learn not to fight it. On days when I can - I do, and on days when I can't, I allow myself to rest as much as possible and I try to plan "sitting down" tasks, which dont take much energy but mean that at least I feel I have acheived something at the end of the day. And, like DD, I am now pretty good at the short-cuts!

I think that, because fatigue goes hand-in-hand with RA, it can be very easy for the docs to dismiss is as just another RA symptom and I do think it might be worth seeing if the GP can at leat help you rule out other causes.

Thinking of you.

Love Tilly xxx

lavenderlady

have you been tested for an underactive thyroid another health problem that is quite common in people with arthritis,
I have sero negative and OA and diabetes along with an underactive thyroid which absolutly knocks your socks off for feeling tired I fell asleep standing up in the shower and sat on the bottom stair ( when we lived in a house now in bungalow) about to go up and feel asleep on the bottom stair, thyroxine helps so much but I have had to go right up on a high dose of 225 mg my friend who had her thyroid removed is only on 75mg I would have thought anemia would have been picked up in your blood tests I was anemic last few times I had mine done good luck in finding out if you need any more tests needing doing michelle x

seamonkey

Evening Dorothy,
Fatigue is absolutely awfull and you are certainly not alone. Do you have help to do things like house work and shopping. Ive cut down hoovering every day to once a week. Its just a case of doing what you can when you can. I hope you can find some answers at the doctor. Im 32 and some times i feel 92. When my kids go bed thats me gone too. Anything later than 9 is too late for me. My body just needs to lay down and rest.
Wishing you well,
Seamonkey

Starburst

Hello,

I find I get very fatigued too, so I feel your pain. My dr says RA itself can make you very tired. If of the opinion that if you're having a rough day, do what you need to and the other stuff can wait. Pacing yourself is hard and comes with practice. Do you get any help with housework?

Definitley do ask for a B12 test. I had one and fortunately my levels were fine but it's def worth getting checked next time you have your usual routine bloods.

All the best.

magenta

Hi Dorothy,
12 years ago when I started attending a rhuemy and was diagnosed with sero-neg arthritis, the rhuemy nurse called me at work to say my Vit B12 levels were low. The blood tests were standard ones. I had to go to hospital to take further tests. The result was that I had problems with absorbing Vit B12. I was given hydroxycobalamin injections to get my levels up. The injections stopped when I moved house and GP. I've since felt the same same knackered, drained way and going to ask my rhuemy next week to get another Vit B12 test.
hope you get on ok,
Magenta x

petals

dreamdaisy wrote:

I do what I can and have learned not to fret about the things I cannot manage. I also know some very good short-cuts so people think I have been busy when I haven't. Needs must! DD

Ha Ha Good morning DD,

This made me think of a lady I used to work with who had a very house proud husband. He was a bit bossy and although they both worked full time he still gave her a list of jobs that needed doing around the house each week. ( i know, grounds for divorce i think lol) anyway one day he added 'clean the lounge curtains' to the list. So, she took them down, hid them in the garage for a few days then put them in the tumble drier for a few minutes to remove the cobwebs and then rehung them.

He was non the wiser and she thought she had won that one.

julie47

Morning Dorothy
Hope today is a little better.
I have RA and quite often have days when I can not get myself motivated and keep shutting my eyes at every oportunity.
It is so annoying but I have come to learn to listen to my body and rest if i have to. Otherwise I feel so sick. Don't know much about b12, I know my SIL has them cause she is amaemic but her count was ok??????
Wouldn't harm to ask

Petals.....good on the lady you knew eh?
what a **** of a husband.......would have shoved him in the dryer.

Take care
Juliepf x

jeannette

Employer's don't understand our fatigue.I find it so hard some-days and they think we are making a fuss. It's so hard to explain,and you feel as if you are letting people down. Anyone had the same problem??? Jeannette

tillytop

Hello Jeanette.

I don't work at the moment but I well remember the feeling of letting people down and feeling that you are making a fuss. I think because fatigue is not always visible it is difficult to explain and for people to understand that it isn't the same as being tired and isn't something which can be cured with a few good nights of sleep. The best way I have found to describe it is by saying it is like "walking through treacle", like in those horrible nightmares where your legs just won't move. I think it doesn't do you any good to feel guilty and, if you can, you might find that trying to focus on the fact that you are doing the very best you can under difficult circumstances.

You may have heard of "the spoon theory" (you will find it by googling). It's often mentioned on the forum because it is such a good illustration of the problems of lack of energy and can perhaps help you explain to others how the fatigue affects you.

Thinking of you.

Love Tilly xxx

tkachev

fatigue is awful and it equates to Lazy in most peoples books.I was extremely fatigued a few weeks back and I could not think straight so bills went unpaid and oh was sent out for take-aways (which i hate as they are expensive and fatty). I couldn't say I'm in bed with a cold, flu or sickness so I didn't get sympathy and nobody really understood how I felt.It just takes over your body. I am anaemic so have ferrous sulphate prescribed.

Elizabeth x

seamonkey

That was a great analogy, walking through treacle. that is just how it feels, when you know you have to move or get up and walk across the room, i sit thinking about doing it and trying to summon th energy crying inside because im so so tired,
i too have left bills unpaid cant watch tv as i cant concentrate and nothing makes sense. I have forgotten important dates for kids, dentist, school stuff which has never happened before. My kitchen is full of bright pink sticky notes trying to remind me of stuff. It really is awfull, ive just had bloods done they didnt say what for mayb something might show up.
Seamonkey

dreamdaisy

Hello towyview, how are things today? I hope you are feeling brighter. DD

towyview

Hi DD,

Many thanks to all of you for your comments. I am new to the forum and it is good to share my feelings with others who understand. We can try to explain to others but they do not understand.
Today hasn`t been too bad, the sun is shining and it seems to give me a different outlook on life. I`m still exhausted but for some reason it feels different when the sun is out. Also, we have booked a holiday to Tenerife and I know I will feel better in the heat.
When I tell my Rheum this they don`t really agree and say that Spanish peolple also suffer from Arthritis. Whatever the case, I know it helps me. What do you think.

Dorothy

dreamdaisy

Sunshine brightens the world, and us, and somehow makes life better. I can cope with my arthritis better when it's sunny, less better when it's dull. Sunny weather is beneficial for bones too. Arthritis will strike anyone at any age, anywhere, and as RA is an auto-immune problem the weather won't affect the disease, but it does affect one's mood. It's no wonder you feel better in Tenerife, who wouldn't? Of course Spanish people have arthritis, as do Greeks, Italians, French, in fact anyone from a sunny country - they are human. DD

woodbon

Hi, fatigue can be caused by all sorts of things, even if you sleep, pain may make you restless in the night and you don't know it, but when you wake up you feel tired. I seem to be waking up more tired than when I went to bed, but must admit I've always been an owl! :shock: Now, though its more than just wanting a lie in its like being drained of energy an wanting to just sit sometimes dozing, then it moves on and I get some energy back,its strange. Sorry to go on, you don't want to hear about me! Try and pace yourself, but I know its not always easy.

seamonkey

Hi Dorothy,
I hope you are having a better day today, and that your tiredness isnt getting you down, sunshine is wonderful l always feel a bit more positive when the sun shines. Not so much better physically but my out look changes too. Not so doom and gloom! Today is sunny so my mood has lifted a bit and i feel more able to do things. Hopefully i wont be ready to fall into bed at 9 and my and OH can actually spend an hr together.
Wishing you well,
seamonkey

caterina57

I have OA but I am tired all the time, almost exhaustion some times and since I have been back at work even though its only a few hours a day I need to rest when I get in. I was going to do all sorts today and as yet not done a great deal at all.
Cath

dreamdaisy

Hi towyview, how are things today? I hope you are as well as you can be. DD

MissKat

I've just been talking about fatigue with my consultant today... I never realised quite what fatigue was and how it affects you until recently, and wow does it?!

We talked about a drug today called Hydroxychloroquine (Plaquenil) ? Does anyone know anything about this? Which supposedly helps with the side effect of fatigue, however, as with everything it has it's own side effects in itself, and I decided to see how my next 3 months go until I see him again and re assess things then.

I am totally with you, and everyone in this thread, I have days where I feel so completely and utterly useless. Today I was trying to explain what the Consultant had said to me to my boyfriend... it took me about half an hour just to get one sentence out, and even then it was gobbledygook, I couldn't even think straight I was so exhausted!

I'm only recently diagnosed, and only been on Meth for 2 months... so I'm not such an expert on this fatigue beast, but understand how you feel completely... right now I feel about 90, and I only just turned 30!

Boo to the beast. Big hugs to one and all x