I am writing this for me rather than anyone, as I need to get out an anger yell about this disease, as I feel right now so many things are being put on hold and my life is going down such a different path to what I thought it might be and I am just feeling cross and irritable. I am not doing the why me, as this is life but for goodness sake after a few years of crap I thought we were turning a corner.....
I feel some days I cry so easily about what could have been but then see myself as lucky as still working though some days a friggin miracle. I know I have a consult in Sept and I know prednislone helps in one way but also does not.
I hate the fact I wake up and so bloody stiff and feel like every day a new thing seems to hurt (now hip right) my hands as coming off the pred have started to peel again, my muscles feel like they are sticking to the bones again and headaches, tired, fatigue and I still have 4 weeks before I have my first rheumy appointment.
I think this is my rant week, so apologies if I do a few of these I just need to get it out of my head before i try to sleep..
I am so glad I found this page think it helps keep you sane. x
Until a balance is struck with your meds you'll have more days/weeks like this.
Time to take off the reasonable head and put on the bloodyminded one.
If you're lucky the right treatment will be selected sooner rather than later and you may have the bonus of the condition going into remission.
If not...well, I expect we'll see a great many more of your posts in this vein. Lol.
Hope you, at least, get a good rest, if not an undisturbed sleep!
thanks all just one of those moments of I am sure many x
Hi Deeb, you go girl!!!! Rant and rave as much as you want! It is normal to feel like this when living with RD. After living with this bloody disease for 22yrs it has changed my life, but, I find there are always ways round round things! It may be different to what you did pre RD but you can still do it! It may take you longer, and you’ll have to tweak lots of things, but you will get there! Hopefully these bad days will be less when you get ya meds sorted and you start to feel better, try not to fight it! It’s a waste of energy.
I used to worry about my future and how I would be, there was so much I wanted to do when diagnosed at 42yrs old, but I’ve learned to live with each day, be it good or bad! and I’ve managed quite well up till now!
Ring your Rhumatology nurse to
get that appointment sooner, or a chat about increasing ya steroids or painkillers may help. Take care 🤗x
I’ve found something to help me - it’s called a ‘One page profile’ we use this with children in school and when they move to High School. On this one page you have sections - what others like and admire about me, what is important to me and the most crucial section - How best to support me.
This can be created by someone else in the case of a child and then it would be their parent/carer but it could be your husband, partner, son or daughter etc. The profile sections are - What's important to ...., How best to support .... and what we admire and love about...
This would be a useful tool to share at your appointment - the sections could be renamed to suit your own personal situation e.g My hopes for this appointment, ....for the future. Where I hope to be health wise in 3months etc. Remember it’s your appointment and whilst we can’t tell the professionals how to do their job and we all need their expertise, maybe it’s useful to be positive and to share with them our thoughts etc and the impact that these things have on our ‘well-being’ a positive state of mind helps us manage our condition. Sending Love 💕 Good Luck to everyone.
It's 6.30 am, I haven't slept all night and just managed to get myself out of bed, walked with the aid of my walking frame into the kitchen to make myself a hot drink. Just switching on my lap top makes me feel that I am not alone. Have a good old moan if it helps relieve the pain, frustration and depression. I know just how you feel as I've been through all those emotions in the last 40 plus years. We all have bad days as well as better ones, don't beat yourself up, it often helps to get things off your chest, isn't that what friends are for. Carol xxx
Hi, so sorry you feel so bad, yes some days are hell & the stiffness is a pain. But I was so much better on Methotrexate injections, had to come off it in March because of recurring infections due to lower immune system. Now on only Naproxen but have noticed getting stiffness again in the morning. I would love to play tennis again and do step classes like I used to but alas no more.RA does change your life and it does get you down. But yesterday a good friend died same age as me after being diagnosed with Ovarian cancer just six weeks ago. It has put my RA into perspective, I know it’s horrible but we can still see the sun shine, heAr the birds sing and see our families. I do hope you will have some relief soon.
yeahhhhh I never was an irritable person but had a few moments recently and of course only do this with hubby as I wont take it out on anyone else.......he knows its not the real me thank god.
Try to stop thinking all the angry thoughts. Of course I don’t mean just lie back & be in pain.......but realise finding the right meds for you does not often happen overnight....but it WILL happen. As soon as you have that first rheumy appointment you really should get some relief.
Life may be different....but just as enjoyable.
Think about it.....If you accept where you are now & look forward to the day you find the meds that suit you....you won’t be stressing 24/7....& as we all know stress is the No 1 NO NO with RA.
I know we are all different ....but looking back, I think a fair few of us now don’t shout at the moon when we have a flare....we work our way through it......as best we can .........I’m sure you will do the same. Believe me that isn’t easy.....but it often works........
thank you AgedCrone not an angry person at work they laugh with me as I always try to find the happy place ven when th epain or fatigue is bad at work. Anger is destructive just have to let out the shout out at the moon moments too.
Hi You rant as and when you want. I got so very upset frustrated etc at first and still do. I've mentioned this before on here but my rheumy has the measure of me as he has called me driven anxious but the best was when he said to me stop looking back at what you were, look forward and be the best you can be. It was longer than that but that's it in a nutshell. I didn't like it at the time but as I progress on this journey it has been helpful. I hope there is something said to you that is a pivotal turning point for you.
So true Ruth....this wretched disease is certainly three steps forward four steps back......unless you are one if the fortunate few who find the right meds early on.
I honestly reckon go with the flow is the answer......fighting the world gets you in a state & makes you feel worse.......but of course if you have a job,children, elderly parents to look after .....it isn’t always possible to take that path.
But trying to be calm does help.......don’t all shout at me at once all those of you in pain right now....,just try it for a couple of days.
I'm really sorry and I completely understand. I find myself looking at much older people and marvelling at the way they move around... it doesn't help. At night I take two Amitriptyline tablets, these really help me to rest and feel less pain during the night. Do you take these? If not, I'd recommend asking your rheumatologist at your next appointment for a prescription.
So do I!... I live half way up a hill and find myself looking at people my age (I'm no spring chicken) and older nonchalantly striding past my house. It doesn't make me feel angry, just a bit sad.
It wasn't very long ago that I could run the 100+ metres up that hill. Now it's getting to be an ordeal with my eroded joints and messed up lungs. Yep, guess I feel more than just a bit sad.
I take prednisone too but only in the morning as it’s a steroid - if you take it at night it might not help you sleep. I also take Leflunomide at night with the amitriplylene. I inject with Imraldi every fortnight too and try to do this at night as well.
I think the effect RA has on the life we lead is very difficult to accept at times. Also the fact that is isn't a temporary effect we are always going to have RA which will limit our choice as they are dependent on how well controlled the RA is. This is how I think of it when I feel positive on bad days or weeks or hours I could howl at the moon
It’s ok to rant 😊. I’ve been feeling the same recently! I had steroid injections in my knees but my right one is really sore again after a week 😩. Going for an X-ray as I can feel it crunching 🙄
Hi Deeb I really feel for you. You are exactly where I was at the end of last year/beginning this year. I kept looking at people older than me (my MIL is 86 and so agile) and thinking why me - coupled with worrying about the future. I was SO bloomin angry. I ended up seeing a counsellor which I found helped me at lot and I dont know if you'd consider this? Anyway - fast forward to now. Yesterday I walked for an hour and can now do some of the things I used to - i accept there are probably some things I wont ever be able to do. BUT although not quite where I want to be I am a million miles away from where I was. Don't give up it DOES get better with proper medication. In the meantime rant and get it out - suppressing your feelings really wont help. Xx
Just to say I can beat that, im 61 and mil is 93 living independently and I get compared with her as we both have walking sticks. I've had a word with oh as it was really getting to me. Some of his family do and she does often, but I just swollow it but it does affect me. However I'm most fortunate as have very supportive family so really cant/shouldn't grumble. Just thought I'd beat you at that 😂😃😂. Just a bit of fun.
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Scared! But it'll all work out.
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Methotrexate and nausea.
