I am often hiding in the wings reading peoples posts but I need something, not sure what it is, is it advice? Empathy? Or just a good old moan?
Basically long story short I've got RA, been diagnosed 14 years, I'm 31 and trying to work full time. I had a total shoulder replacement last year and the past few months I've been getting a lot of muscular pain around my shoulder blade, so I trundled off to the drs this morning. He has contacted my surgeon, arranged physio, increased and changed my pain meds and sent me for an xray, it was the most fantastic drs appointment ever, but I just feel so flat.
I think it's days like this when I realise that RA is here to stay and it just gets to me sometimes.
I'm sorry for the moan but I don't know where else I can go and say what I have just said.
Anyways thanks for reading and I'm now going to go and work my way through thus box of maltesers 😀
Emma xx
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purplecats
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Know the feeling. It took me 5 years to change and accept my life as it is now. I have psoriatic arthritis and RA as well. I was diagnosed 16 years ago. I have an injection once a week. It stops deterioration of the joints but not the pain. I tend to reach for Dairy Milk. I find that you can get really down some days (painful wet dreary days) but other days (bright and sunny) you have some energy and you can achieve something then even if it is to just clean up. Hope you enjoy your Maltesers.
This horridious disease gets to us all. I have to stop taking my ad-cal and am on high dose vitamin d and drink plenty of milk. I don't think the heat is helping either. I think the whosoever decided to inflict all this on us should be sent to the worst place in the universe, ideally Pluto (not a planet but far enough away) and should take his invention with him. (If it was a him, if not she should go.)
Haha I agree, I have days where I think I can handle this but the heat is just getting to me I think.
I always wonder what causes RA, like I know the science behind it, but what makes use the lucky ones??
Xx
Hello Emma. You go ahead and moan!!! You''ve had ra for 14 years and you're only 31, so you have every right to moan and complain. I've had RA for 3 years and i'm 50 and I can not seem to stop complaining lol
Life is indeed a roller coaster sometimes, we hear you.
I'm interested in your shoulder replacement though, I was offered one some years ago but the surgeon didn't really sell the idea to me (contraindicated due to torn rotator cuff and something or other collar - memory not what it was 😬). He told me there was a significant chance I would be left in chronic pain and that I wouldn't have very good mobility even if it worked. 😳 But he'd do it 'if I insisted'. I figured it's like that anyway so I thought I'd skip the surgery.
With regards the shoulder replacement I would put it off for as long as possible. Pain wise it is so much more comfortable than prior to surgery, but mobility is so much worse. I had rotator cuff and tendon issues which has affected the recovery so I'm currently using my shoulder blade to move my shoulder as my rotator cuff hasn't got the strength or ability to do its job, which is leading to this pain in my muscles as I've now got bursitis under my shoulder blade.
It's difficult we have joints replaced because it eases the pain, but it can impact movement. I wouldn't change it as I like not having the pain, I just wish I had more movement.
Interesting you say it helped the pain. The pain is a constant erm, pain for me, but it seems even after surgery I stood a pretty good chance of being in more pain. And it isn't the worst pain I have to live with by some distance so I just tend to put up with it. When it started giving me problems the pain was excruciating for relatively short spells (30 minutes or so) and then it would click and become less painful. I had manipulation physio and that helped a lot.
Mobility wise I can still use that arm, I can't lift it above my head or put my hand behind my back above lower back level, if that makes sense. I have lost some of the muscle on the top of the shoulder so have a 'boney shoulder'. I can't usually sleep on that side although sometimes I can for a bit.
But I still manage to do some exercise and don't struggle with day to day things like cooking, washing clothes or showering. At least not because of my shoulder. And it doesn't usually stop me from sleeping.
Would you say your pain was at a higher level (than what I describe) before the op? And how restricted is the mobility now? If you don't mind me asking?! Feel free not to answer if you don't want to. 🙂
I guess you will still be able to increase the mobility over time?
Hi Glad you have come out of the wings onto centre stage. Really sorry you are here because it means you have RA and in all probability pain.
I hope you find this forum friendly and supportive. I do.
Unfortunately as you know there is no magic wand quick fix with RA. The important thing is your GP was proactive, rather than the you have RA live with it type
I hope the change of meds works, and the physio helps deal with the pain. And the Xray shows something they an deal with. But it all takes time, so while waiting enjoy the maltesers.
The beauty of this place is that we're all in the same boat, some in less choppy waters than others but still the same old boat.
I've just completed a mindfulness course which has helped me immensely with my mood. If you have the inclination to try it Futurelearn run a free online version you can do at your own pace in your own time. Good luck x
Im 34 and just diagnosed but i know ive had it for at least 2yrs it really gets you down when you are unable to do things you once enjoyed so much. I can't imagine what I'll feel like after 14yrs hunny you are a strong women and you'll get through this we all just have to keep pushing.
Don't worry about the future, once it's under control life just goes on. I've had it 17 years since i was 29/30 and (if it wasn't for having degenerative disc disease / spinal stenosis / scoliosis / sciatica) manage fine and I'm not suffering that much with it now I'm on biologics.
I felt far, far worse for the first few years for what it's worth.
I too have scoliosis and sciatica im also shorter by an inch on my left side due to a fracture in my leg teplaced with a metal rod so im no newbie to pain but it is definitely new type of pain.
Wow, what a good doctor you have, can I see him/her!! I'm still moaning & still not getting any help. Found out today that the earliest I can hope to get an appointment with the pain clinic is February 2017!?! After many messages left on RA hospital help line I was given an appointment to see a nurse which, is now about 3 weeks away!! The pain at times is unbearable, more painful joints added to the list as time goes on. This morning I showered but, couldn't dry myself!!! SO frustrated! I feel that nobody gives a damn , I try to keep going like one has to but I'm getting more & more limited in what I can physically do!!
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xx
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