Days when everything hurts!

[MrsBones123]

Hi everyone,

Don't know if this sounds a bit odd but hey-ho I'll post it anyway.

For the past few months (was DX in June) I've been having the odd day, maybe once a week, when I've felt terrible, physically and mentally.

It's not caused by a flare, joints feel more or less the same most days, and can't put it down to the MTX either as it happened before I started taking it.

How it feels is like I've been 'hit by a bus' - like my whole body hurts but can't pinpoint it to specific joints. It feels as though someone turned up the pain volume to high. This goes with a dismal mood that I can't shake off, just feel sorry for myself, have a cry, then the next day, I'm back to normal. (Normal with RA I mean )

Can anyone relate to this? It's not like me at all to be weepy, but the total body pain is a mystery. Is it RA related?

[oldtimer]

When my body does this, it's often a sign that I have been expecting too much of my body. My mind drives my body on and then it has a day or so, or sometimes less, when it just feels like I can't do anything, everything hurts and I want to curl up in a corner and weep. I hate those days because they are a reminder that I can't do what I used to do, but in a way I also treasure them, because they are a reminder that I need to rest, do nothing, repair and recover.

[MrsBones123 in reply to oldtimer]

I know what you mean about your mind driving your body on. That's what I've been doing. I think it's that I see not being able to do as much as I used to as a failure of willpower...'if I just try a bit harder', because my joints don't hurt much most days. It's body bullying.

Attitude adjustment needed, because it's me I'm hurting. I have the feeling that at least half the battle, (or maybe compromise is a better word) is in the mind.

[PFKAAde]

Like oldtimer it has always seemed to me that I have a run of 'good' days during which I do too much, and then it catches up with me and I feel dreadful for a day. Run over by a bus sums it up perfectly. 🚌

I've always been told the trick is not to do too much when you are having a good day, easier said than done.

[MrsBones123 in reply to PFKAAde]

Yes, easier said than done Ade, It seems to be one of those lessons we have to keep relearning until it Goes In

[PFKAAde in reply to MrsBones123]

After 17 years I still do it. When you feel ok it feels like you're being lazy if you don't do all the things you didn't do when you were feeling rubbish. And repeat....

🙂

[Ruffles13]

I have been so depressed and crying. Was diagnosed with RA about 2 years ago and have yet to get it stabilised. I have taken methotrexate which they took me off. Then Leflunomide which again taken off. I am now on Salfasalazine which is not helping. Cannot get appointment at doctors and have to wait a long time for Rhumatoligy appointments. Get so frustrated deontology know what to do. I am living on paracetamol and Ibrufen which doesn't help much. My ankle and leg are swollen and feels like it has a elastic band pulling it tight. Don't like being a moaner but it's hard to be upbeat when your in so much pain.

[MrsBones123 in reply to Ruffles13]

Sorry you're having such a hard time at the moment Ruffles, not surprising that we get down sometimes, especially when waiting to see rheumies etc. and we're not stabilised or getting much support.

I know some days when in pain, pestering people seems like the last thing you want to do, but can you get some more effective painkillers from your GP? Sometimes we have to make a fuss or get ignored.

Hope things get easier for you soon Ruffles xx

[Ruffles13 in reply to MrsBones123]

Thank you I've tried lots of pain killers but they don't help much.

[PFKAAde in reply to Ruffles13]

Hi Ruffles13

It took me about 7 years to fully get things under control, I tried and failed on pretty much every DMARD there is before we went down the biologics route.

You are part way down that path now, so keep on hoping. Failing on MTX and (I think) 2 more DMARDS along with a DAS score above a certain level and high inflammatory markers (ESR + CRP) are all prerequisites for biologics (in the UK).

They aren't without risk / side-effects, but then nothing is.

Good luck.

Ade

[Ruffles13 in reply to PFKAAde]

Thank you for your reply. I have been told about the bio logics which I would like to try. I've never had. I have never had any numbers given to me of how bad I am. I am going to ask about this next time I see Rhumatologist.

[Kris65]

I have learned that this disease isn't just about our joints. I also have days like that.

Body fatigue affects everything.

[MrsBones123 in reply to Kris65]

It does Kris, and it's difficult to explain to people who haven't experienced it, isn't it.

[Kariss]

Hi, I've had RA for quite a few years (8 at least since I was diagnosed), but I still get days like that. I think Oldtimer and Ade are probably right when they say your feelings may be because when we feel ok-ish we do more than we realise and then the next day we suffer for it. It's possibly our bodies way of saying 'enough, now do something easier, like rest!'

After all this time I still get cross when I'm busy and feel myself running out of energy, but after attending a joint protection course I have learned to pace myself when doing a busy job. You can do this by listening to your body eg stop when you start to struggle and have a little break or a cup of tea and then go back to the activity when you feel refreshed, or leave it for later.

One thing I have found hard is saying to others 'l need to stop and rest now', because it's not always obvious to them, but I'm learning! The feeling weepy also seems to go with this low feeling. The RA is always there and little things pop up to remind us, like not being able to turn a tap off or struggling to push a tablet out of its blister pack! I burst into tears one day when my husband came in and nonchalantly told me he'd already walked 12000 steps on the golf course before breakfast. It just seemed so unfair when I can barely manage 2000 without a break - and I used to walk everywhere! I guess no matter how brave we are our, we all have little moments of misery like this, but as you've noticed, they pass and we carry on.

It might be a good idea to keep a note of the days you feel sad and unwell like this so that you can tell the nurse at your next clinic appointment. They should ask you about your mood anyway but they usually ask how you feel TODAY, and that is what they will record, so it's no good if that day you feel okay but had been 'off' the day before! Low mood and depression can be part of RA and you need to feel well to cope with it!

Hope you start to feel less like this and that the meds keep working for you, and you can always come on this site to have a moan or a cry! Best wishes K

[MrsBones123 in reply to Kariss]

Thanks Kariss, some great advice there. We tend to push on don't we, and underestimate how long things take and overestimate how much energy we have. (Because we used to have it and damn it, where has it gone? )

I've got a joint protection class in a fortnight, think that will be really helpful.

My husband's a walker too. We used to enjoy visiting gardens in stately homes, I do miss that, the long walks. Wouldn't mind so much but he's 8 years older than me, and compared to his fitness levels, I feel like the old one I can still enjoy a short walk around the park though, most days.

xxxx

[Kariss in reply to MrsBones123]

That sounds just like me! I hope you enjoy the joint protection class - I did. I learnt lots of new things to help save everyday movement eg keeping a plastic jug by the sink to use to fill the kettle (my favourite one) - so simple, but I hadn't thought of it myself! There were lots of tips on relaxation too which I now try very hard to practice

Best wishes. Xx K

[Gigi71]

Yes it's RA. I am new to this site but not RA. We all have our own problems unique to us, but the definite theme we all have, is off days, when we feel just so tired,. It has been a relief to me to see how common this is, Inspite of the rheumatologists telling me it's a fact. Best wishes to you .

[MrsBones123 in reply to Gigi71]

Thanks Gigi, it was a relief to me reading all the replies here, I wasn't told much by the Rheumy (only seen her a couple of times for a few minutes) they seem to be so focused on joints.

This forum is mega-helpful and people so kind, sharing theirexperiences.

[JacquiThomas999]

I wasn't driving. But I do know how you feel. Have days when all I want to do is cry. Fortunately my passengers are supportive. My boss so far isn't too bad. But what the future holds, my crystal ball has smashed.

[phillip321]

I have days when my whole body wants to give up and i feel so ill that I just want to sleep, that would be ok if it would come at night and I could sleep then. I suffer with RA Osteoarthritis fibromyalgia spondylitis and just been diagnosed with carpel tunnel I have yet to find anything that helps with all of these. I tend to push myself to keep going and get very upset when I can not do the simplest things and feel rough for days on end. I would like a hip replacement as I think this would help with the back a but they keep putting it off so I keep on going

[MrsBones123 in reply to phillip321]

Thanks for replying Phillip, you have a lot going on there, I hope you can get your hip replacement soon, it might be one less painful thing to put up with.

Do you take a nap when you can? I find it helps a bit, with not sleeping very well at night.Even Just half an hour listening to a relaxing YouTube or music, well it gives the old bod a break.