Don't feel crap all the time do you?: Hope you don't... - NRAS

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Don't feel crap all the time do you?

Marionfromhappydays
Marionfromhappydays

Hope you don't mind me having a brain dump here but just because you have RA doesn't mean you feel crap all the time does it ? By crap I mean tired, in pain and anxious ?

I'm awaiting blood tests and possible referral so dont even know if I do have RA (I posted here last week for help and got the very useful advice to keep getting back to my GP for help which I have done, so thank you all for helping x).

I am anxious to find out what's wrong with me and dont know if I'm helping myself by reading these forums as I am in the freak out stage! I understand everyone's journey is different but would you say your bad days are alot less than your good days?

Many thanks xx

30 Replies
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Hi Marion

No you can be reassured that we don’t feel crap all the time. Many sufferers are hardly suffering at all atm and are far too busy doing other things than to give up the time to post on here.

If you do get diagnosed with R.A. or another autoimmune disease there is such an amazing array of medications available (and more under development) that I’m sure your consultant will work Hard to find one to control your specific condition.

So stay hopeful and know there are loads of us on here to support you when you feel you need it and the NRAS is brilliant.

Thank you so much xx

Hi. For some people I would say that at first, yes bad days are more than good. As soon as you can see someone to get some meds that will help. Have you been given anything at all? There are meds to help at first whilst other meds kick in, as some take a while to kick in. For me I had injections into joints after fluid taken off, steroid injections and put on prednisalone all for immediate help then a cocktail of meds that take time. That was in first appointment. So depending on where you are at. My fone playing up and wont let me look at your previous post. Anyway things should improve for you. Be kind and pace yourself, eat healthily, take in plenry of fluids and if you are not on pain relief I suggest you get advice and take some.

Things will improve.

Take care

Sending you a gentle hug

🌈

Thanks so much x

I've been given some pain relief and just the fact the GP listened to me and now have a plan of action ie blood tests and referral has been a big help.

I just needed some reassurance the pain will subside eventually and I don't want the disease to become my personality if you know what I mean. Early days for me x

I apprecaite all your help, thank you

I was diagnosed 18 months ago and I can honestly say since i started my meds I havnt suffered to badly at all had a couple of flares since and now started a new med so hope that helps put your mind at ease , like others have said it's always hard at first but be kind to yourself eat and sleep as well as you can and try not to worry to much as that wont help x

Ive not read the comments below so this may have been said. I can say that from what I know and have experienced due to a drugs that were discovered about 20 years ago (i think) things have changed. So as far as I can, as we are all different I encourage you that with time things will improve. Trust yourself to be part of your treatment and your drs. Its team work. Also this site is so good. Read and take what suits you to help you. 🌈

For me definitely I went through a really rough time 18 months all in all till they found the right medication but I hung on I listened to people on this site and I can honestly say out of 10 I am about a 8 which for me is great I will never be the same running here their and everywhere but at least I have no pain my life is good good at the moment has been for last month so 🤞 up and up good luck you will get their stay safe x

It's about a year since my diagnosis and I can honestly say that I'm coping well. Haven't got the meds perfect yet but definitely far more good days than bad. In fact, I haven't had any really awful days 😊 I can't always do everything that I'd like to but then I also can't always do the things which I'd rather not do anyway (e.g. cleaning )so there's always, as they say, a silver lining 😂

Life has changed a little but it's not all bad by any means. I've become a bit more aware of what's important (a bit like the current situation) and am learning to prioritise.

I'm lucky in that I have a great GP and rheumy clinic and hopefully you'll feel more optimistic once you've had a definitive diagnosis and can start treatment. I remember that the time waiting for the appointment to come through after referral was actually the worst bit as it's so easy to fear the worst.

Try to stay positive, don't Google too much and stick to trustworthy sites like NRAS 😉

Oh and offload on here whenever you need to - it's a great place to get support and understanding 👌

Thank you xx

I’ve had RA since 2006... and although I have had some debilitating flares in that time, mostly I feel pretty normal and get on with my life. The effects are cumulative... so I am not in such great shape as I was then but some of that is age too. Obviously, patients experience the disease differently and some will no doubt relate a more challenging disease pattern but the meds are pretty good these days and lots of reasons to stay positive xx

Thanks Lyndy x

No I don’t feel crap all the time 😊

What you have to remember is that alot of people who post on and use these forums are quite often people who are newly diagnosed or are struggling with their RA. The people whose RA is well controlled are off getting on with their lives, only dipping in occasionally. I’d try not to read too many posts until you have a diagnosis, chances are that you will not experience the same as anyone else and you will just be scaring yourself when you may not even have RA.

Do let us know how you get on, hopefully you will have some answers soon.

Thank you Kitty x

Hi. I was diagnosed 4 years ago and initially my meds worked with the odd blip. Last February 2019 things got out of hand and I can honestly say I barely had a good day until January this year . After trying different drugs I’m better but I still have a lot of Bad days and I know I haven’t quite found the right mix yet. Everything on hold due toC19.

Feeling like crap ( flu like symptoms) pain, fatigue is a sign your disease is active. If you do have RA then you can treatment you won’t be so anxious it’s often a relief when you are diagnosed. It’s the not knowing I found difficult

I hope you get back to consistently feeling better, I guess its trial and error until you reach the optimum drug and doses x

Yes the unknowing is absolutely pants, my mind runs wild and sometimes a little bit of knowledge is worse than none !

Really appreciate your reply xx

wishbone
wishbone
in reply to J1707

Much the same with me J1, my good days have long since past and I'm left with bad days and not so bad days. That said, my not so bad days are a lot more frequent than they were a few years ago when most of my days were bad. I am grateful to baricitinib for that!

So sorry to hear this, I hope things change and you can have good days more often x

Compared with how things were for several years, though not great, I'm doing ok thanks.

My first year or so was 100% crap. These days it’s more like 1%.... remember many people leave the forum after a year or so as they are off living their lives, so you have more people with the crappiest disease on here. But the majority of people do well after the first awfulness.

Vonnie10
Vonnie10
in reply to helixhelix

So helix us all left here are snookered basically ?

helixhelix
helixhelix
in reply to Vonnie10

No! Sorry I didn’t mean it to sound that way! Just more likely to have a more complicated journey and, like you, to have to try lots of different things. And then maybe not get back to full 100% .

Nobody’s snookered because they keep developing new things. 15 years ago I would have been in miserable crappy RA land because there were no biologics.

Vonnie10
Vonnie10
in reply to helixhelix

Hel ..I’m struggling mostly doubt I will ever be me again just have to live with it make the best of it . Get what you meant tho. Or are we just moaners I dunno..wished I could switch it off or find a cure for us all..Hope your ok . X

I sincerely hope you do not have RA or any of the inflammatory diseases. Waiting for diagnosis is nerve racking and I feel for you. Those early days were awful for me and it has taken a while to tailor the meds but, to be honest, I reckon I'm about 95% of my normal. No, my life is not the same as it was before but still pretty darned good.

Sorry you’ve got this I truly hope you haven’t I have not found a drug suitable I’m 4 years in side effects basically and the drugs not doing what there suppose to.. I’m just unlucky.. it’s a miserable disease most on here do great I’m just unlucky. Wish you all the luck

Hi. The short answer is that this disease isn't a one size fits all. The long answer would take forever. It is scary when you first come on the site when newly diagnosed, which you are not yet, but you soon learn to take it all in and filter it. Don't read the worst case scenarios and think that is where you are going to be down the line. I did that at first and terrified myself unnecessarily. You must be positive as this will help you with your condition. No-one knows how their RA journey will be but to dwell on it isn't helpful. You could well be like me. Yes, I have had some difficult times but 18 years on my life is great. I dance, look after my young granddaughter, garden, walk and generally have a good life. Look at the positives on the site and focus on these. A positive mind and outlook will help you. Deal with today. Then tomorrow do the same. Yesterday has gone, Tomorrow doesn't exist so there is only today to deal with. Take care. Stay safe. x

Thank you x

If you haven't yet been diagnosed why are you assuming it's something as, serious as ra.

Surely you would want to assume something positive.

Believe me I truly hope I do not have RA.

Sometimes a little knowledge is far worse than none at all,) I wish I could switch my brain off just like I wish I could cut the pain off.

Just to reassure you I've had RA over 20 years and I'm pretty pain free. Once meds were sorted I stopped needing any pain relief. Only pain relief I take is because I'm waiting for hip replacement surgery due to OA and that is only naproxen and not all the time. X

Hello had a few rocky years with Ra which got me down n feeling crap and useless now it's much improved but still struggle at times especially worrying about it coming back bad again and the useless feeling and it's a hard feeling to shake of ...but I no how lucky I am to how bad it was and that's what I keeping telling myself good look Sam xx

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