I just thought I’d post for newly diagnosed people who are in the thick of it just now. I was diagnosed coming up for two years ago and have had such unhappy, difficult times in those two years. I gave up all my hobbies just to survive it, dropped a day at work and tried to keep functioning.
With juggling of medication and waiting it out, I wasn’t sure I’d reach this stage - pretty much pain free (though not stiffness free and I have lots of carefulness built into the way I live now) and I’m just starting to get back some of the active lifestyle I had to give up. This is really just to say, hang in there and keep the faith things can get better. Please don’t think I’m insensitive to those in pain long-term, it is incredibly hard to handle. Bravery every day. But it’s also good to celebrate the relief that the right medication can bring. Who knows how long it will last. Good luck to everyone on this journey.
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Sunshinereturns
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Very good to hear that Sunshinereturns, when I started off with Graves in 2012 I felt so ill that my first post on here was to ask if I would ever feel normal again and the answer is ‘yes’.
With the help and support of the administrators and everyone who uses this group I do.
I joined TUK because the fee we pay to be members is what keeps this amazing group going and allows them to fight on our behalf, so if you can afford to it’s well worth doing that. Actually not just you - it’s well worth it for everyone and anyone who has benefited to become a member if they can.
Oops - I thought I was on the thyroid site. It was when you said you had to give up all your hobbies etc - I was like that when I developed Graves’ disease . A couple of years later inflammatory arthritis kicked in - who knew growing old could hold so many surprises? It’s worth joining NRAS too, this is a great site as well.
That's why I joined NRAS; I also use Give As You Live for online shopping (recommended by someone on here 🙏) so that they get a little from that too. Sadly Amazon have stopped their Smile system 😏
thankyou so much for your post,just when I needed some sunshine this morning.was so over the moon with new drugs filgotinib,and pain in hands so much better after only a few weeks.Had a cold over last 2 weeks,and although continued with meds,pain in hands has come back.I am assuming it is just a flare due to cold,but felt low today in case the relief was short lived.tv packed up on Thursday,have carpet moth on stairs,and kitchen sink blocked,things I would normally deal with ok,seem insurmountable today.going to my sons to lunch,and dog sitting from Wednesday to Friday at his house,so have to buck my ideas up,as don’t want to worry them.Am feeling all of my 78 years at the moment.I am sorry for this post,as have been so positive up to now,and feel ashamed at needing reassurance.Thankyou all for just being there,as you are the only ones who understand.God bless xx
Don’t ever be sorry for posting when times are hard. It’s so comforting to get support from people who understand. I’m so sorry to hear your hands are sore again - it’s very dispiriting when you feel medication is working then something goes wrong. Keep on keeping on. I found a different pain relief made a difference in a flare. Etoricoxib is the only thing that helped me. Sending you strength x
hey Doodlereggie. I understand how you feel. I’ve had arthritis for 30 yrs. (since i was 21). I’ve been on Infliximab infusions for 19yrs. Plus i have Iritis & Glaucoma. Without my infusions. I can’t walk. I’m so bloody grateful for the NHS. I still get low days & fatigue can be as bad as the pain. But never feel ashamed at needing comfort from others. Everyone on this forum understands how frustrating chronic pain can be. I also know how frustrating carpet moths can be too. I’ve got a few chunks of carpet that have been eaten away. I’ve tried loads of things to get rid of them. I might have to have a deep, deep clean. Everyday chores really can be a chore when you have longterm health problems. But when you can manage domestic ‘duties’ it’s very rewarding. You feel you’ve accomplished something. Good luck with the dog sitting. (I love dogs). Although i live with a lovely old hamster called Eric. I had to put his little ladder in his cage the other day. I think he has arthritis too! Good luck with everything x
thankyou so much for your support,made me feel better already.I think part of the trouble is I don’t tell my son and his wife how I feel some days,and just try and do all required of me,which takes its toll.It makes me feel not so useless if I can do their garden or look after their labradoodle so they can have little breaks away.It is true it helps to feel you have accomplished something.I am very lucky as have an excellent rheumatologist,and good g.p.which some people on here don’t have,so I too am very grateful to nhs.
I am sure it is just a flare and a few down days,and I will bounce back as usual.Feeling more positive already Thankyou xx
Thank you Sunshinereturns. A lovely post that brings me hope!
I am just three months in from being diagnosed. I am trying to be positive but some days it's hard. I find the pain and lack of sleep drags me down but I take my medication and hope that it's gradually working. On the plus side my GP, rheumy team and last but not least, my husband have been great! Onwards and upwards!
It was the lack of sleep that broke me. Night after night of no sleep. It corrodes your sense of self. That’s great you have support. It makes all the difference in the world. I was given amitripyline for muscle relaxant/sleep and it did help a bit. All the very best x
This is a fantastic story and one that resonates with so many other people who have RA. Like you, almost 5 years ago the pain and anguish of what my life had become was almost too much to bear. I had inflammation in virtually all my joints including my jaw. Nothing much changed really during the first 8 months whilst different drugs/doses were tried … then very very gradually things started to improve.
I have been living my best life and pain free for 2 years now … and sometimes have to remind myself how poorly I was. I know things could change, but I also know how many different drugs are available now to help me. It’s a long road but one worth taking 👍
It’s so hard to see a way through when things are bad. It takes so much time to see improvements. Keep asking to try different pain relief measures as it seems so personal and one that doesn’t work for you makes no difference. Hope the find the right thing soon x
Great to hear a positive story. I’m still struggling but I’m still better than I have been. Hoping to get some help from GP tomorrow mainly from the side effects I’m experiencing which I’m struggling to cope with. I considered one or two days a week with nausea fatigue and brain fog was ok to be mainly pain free but since having covid and a chest infection the 1-2 days have manifested into 5 so biting the bullet and getting help 🤞remission is still a dream but your post has reminded me it’s possible so thanks.
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