Sleep for hours and still wake up tired!

Thelaststarfighter

Hello to all,

I don't know about anyone else but I could sleep for Ulster and awake up wrecked!
Last night I slept for 9 hours but crawled out of bed for work feeling like I hadn't been to sleep at all!
The thing that I struggle to get used to as a newly diagnosed seronegative sufferer is my total reliance on painkillers.
I feel almost like I'm a fake, what I mean is this, my mother in law is a cancer sufferer and she often remarks that people see her out and about and say, shes looking well but as she puts it,"it's the drugs they're seeing not me".

Is this just me or does anyone feel the same?

dibdab

Hi there,
this disease is all too real, and you're not a fake!!!!! Sadly folks can't see what we deal with on a day to day basis, but those who know us best understand what we cope with to a greater or lesser extent. Hopefully you're started on some dmards which will slow down the progress of your disease and mean that you become less reliant on the pain killers then you might feel more able to face the day. I know that the cocodamols reduce my pain levels but leave me feeling like a zombie- it's a juggling act finding the level of pain relief you can cope with. Talk to your rheumy or GP- they may be able to suggest something that leaves you less zonked!

Deb x

dreamdaisy

Fatigue is part-and-parcel of sero-negative inflammatory arthritis and it shows that yours is not yet under control - mind you, even with the drugs (I'm on three) it still pops up from time to time. I hope that the sulph soon starts to combat this for you but in the meantime rest as often as you can, it's important. DD

barbara12

Hello ..and I don't think I have met you before so welcome from me
I have OA ...and even on the nights I sleep well like you I wake up so tired..
Lots of us on here have said its hard to get taken seriously with Arthritis...if you had your arm in a sling things would be different.. :roll:
But there's not much we can do about it....I get all sorts of reactions...even from friends that think I shouldn't need a stick...they just cant see the pain...to be honest I used to be the same , till I got it..

stickywicket

It will get better once the meds kick in but flares will still happen. The pain dullers just add to the tiredness too. Have you tried googling The Spoon Theory? It's a good way of understanding it.

I'm sorry about your Mum. We have two forum ladies currently undergoing chemo. I had it about 20 years ago. I wish your Mum a happy outcome.

Thelaststarfighter

Hello all,

Thanks for the replies, very helpful indeed.

I am of work today as I was with the GP today for an entirely different reason than SA, the dangly thing at the back of my throat is swollen and very red! So to cut a story short I asked about when there, when I'm starting the sulf, my GP rather frustrated told me the letter had not yet come from the rhumy so she couldn't give me the dosage!

The tiredness must be down to the cocos and the tramadollies! Judging by what you kind people have said there would be something wrong if I didn't feel tired.

I have had people say to me that I must not have bad dose of arthritis as I can still work, but they never see the mornings i'm that stiff I feel like I could snap in half, or the hour drive home in which I virtually crawl out of the car!

Sorry about that, just had a wee rant there!

Can I just say I find you bunch very helpful and encouraging, thanks to you all.

dreamdaisy

Ah, those who tell you it isn't as bad as you claim, are they arthritics too? No? Thought so. The pain relief will, for sure, add to the tiredness, tramadol is opoid-based and that dopes most people - I save mine for bed time if things are rough because I cannot function during the day if I take it. A mate of ours is a self-employed kitchen fitter, he is on sulph and is still able to work but I have to say his arthritis is not that severe. DD

Thelaststarfighter

Hello DD,

Tell me this did your arthritis start all of a sudden?

dreamdaisy

Not really, I began in April 1997 when my left knee began to swell. By 2002 it was 27" in circumference and that's when I had my first syovectomy. Mind you no-one recognised my trouble as an inflammatory arthritis, that was only considered when the swelling started to return five months after the surgery. I had another op on that knee in the summer of 2003 then my right knee started to join in that October. Over the years I've added more joints and have OA as a result of the joint damage caused (I reckon) by five years of no meds and then fairly feeble ones being introduced far too late. Everone's arthritis is unique to them in how it develops and at what rate. DD

Thelaststarfighter

DD,

Mine just cut out the whole one joint at a time! Last July I had sore heels on a Friday by Monday I couldn't walk, sit or drive.

I was so naive thinking that as I hobbled into the docs i would be given a antibiotic and would be flying again in a week or so.
Going from very rarely taking a headache tablet or painkillers to eating them like smarties was some change.

But I am an optimist and will never let this disease get on top of me, having said that I'm going now to bed for a rest!

Thanks again DD,

gilly1957

Hi

I can sleep for England a lot of the time but I'm still tired, not so bad since I have started doing some exercise, but I do struggle to get out of bed!! lol.

I am on Tramadol as well, amongst other meds.

When I was first on Tramadol it knocked me stupid, my GP changed it to slow release Tramadol and I have been fine, is what you take or the ordinary ones?

Gill x

frogmorton

The arthritis is exhausting in kitself, but meds - the painkillers you mention are tiring too for me :?

By the way I was the same as you with my arthritis (have had back OA for years but I mean the sero-neg malarkey), I went to be ok and woke up stuck rigid in a curled up position and in agony!! I am so with you!

the good news is that I am way better now and days like that are few and far between.

Love

Toni xxx

Thelaststarfighter

Hello frogmorton nice to meet you!

Been on tramadollies since about the second trip to the doctor, they started me on paracetamol and well as you all know they were useless.
Then the put me on cocos I think it was 15/500s then that wasn't enough and I am now on 30/500s the tramadol which are are the 100mg long release version, and still there was pain.
The doc also gave me morph patches and after three days I had a thumping headache and spent most of the day looking down the porcelain express, needless to say I ripped it off and shudder now when I look at the box.

I,m heartened to hear you say things are way better now, I just know within myself I can't keep on going taking this many painkillers.

Just had a chat with a friend who has had RA since in his teens and he's now in in late 30's and he is not in a good state. The damage was done before the DMARDS came on the seen.

I know I am fortunate to be diagnosed in this day and age. I have all those who helped with the research to thank.

So to anyone who may be out there who gave up time and pushed themselves for research I say thank you!

dreamdaisy

Everyone's arthritis is different but I know that RA can come on very quickly and with devastating effects. Pain relief is necessary but is not the entire answer simply because can't be. The term 'pain killer' is a total misnomer because surely something which is killed doesn't come back. Pain does, again, again and again. I've gotten used to it and thankfully I can no longer remember my pain-free days. It took me years to get to the trammy stage and now I ration them for the very bad days - I like to know that I have something in reserve, e.g. I recently had my husband hospitalised with a gangrenous appendix. Without having the strong stuff to hand I wouldn't have got through that. We are, however, all very different in what we can tolerate on the pain front and in the early days it's tough. DD

Thelaststarfighter

Your spot on DD never thought of painkillers that way

The doc did give me another tablet which was for as she put it "breakthrough pain". I have taken it twice and it should be rebranded as a sleeping pill!

I must say too that arcoxia I found to be vey helpful. I was taken of it for a while as it made me bleed , while of it my swelling which it kept at bay ran riot. The doc said there was nothing else to give me other than steroids and as I was going for scans they feared they would mask symptoms so could not administer them.
Have you ever heard that before?

lizzy100

pain killers are for pain, not for what you see. if they help its worth it.

as for sleep, iv been sooo tired lately, and i dont know why. i have seroneg too. iv been going to bed at 8.30pm lately. i cant seem to sleep in the day though even when im so tired. i feel totally shattered, but my iron levels and all are ok so dont know why. it could be the steroids and methotrex i guess, but was ok before. :roll:

Thelaststarfighter

Hi lizzy100 nice to meet you.

I know the feeling well, the rhumy told me that people with pains often feel exhausted.

I am sorry I can't give you any help but I do hope you feel better soon.