Diagnosed six months ago.

[Summerrain14]

I was diagnosed with RA around six months ago and reality is starting to kick in. Not helped by a bit of a flare up at the moment. How do you deal with the fatigue and brain fog? I am usually a positive person with a can do attitude but am finding myself becoming more upset and frustrated. I have a great rheumatologist which I am thankfully for. I also have Lupus too, these last two years have been a little challenging at times. Any advice with people who totally understand would be really appreciated.

[oldtimer]

Things will get better, and worse, and better and worse. Make the most of the good times, but don't overdo the enthusiasm! Learn to pace yourself and enjoy life, especially the joy of walking in countryside or meeting a friend who understands.

The period of adjustment takes a long time, from understanding and accepting that you have a long-term condition (at least a year in most people and even longer for me...) to accepting that you are not going to be able to climb mountains again.

[Pippy25 in reply to oldtimer]

I think nature and the countryside is healing in another sense and I totally agree with you about friends who understand.

[Brushwork in reply to Pippy25]

I agree with Old-timer, and would add that you will go through the acceptance process every time you encounter another RA problem and find that it has progressed, but to a lesser extent.

Also agree with making the most of everyday, walk, talk, laugh and live the best way you can. It is the only way with a chronic illness.

[Hidden]

Oh if only I had the answers to this question. Fatigue!!!! This word doesn’t even come close to describing how it effects us.fatigue is a sign that the disease is active. So maybe your meds aren’t working for you. Fatigue has controlled my year and I no longer drive when I have fatigue because I fear I will cause a crash. I’ve learnt to down tools although I hate doing this but if I don’t I end up having severe allergic reactions 🤷‍♀️. So I’ve go from being a doer to a sod all sitter 🥺🥺but I get over these bouts quicker. Everyone is different. Trying to find the right meds but it’s trial and error.

[Hidden]

Summerrain14 I am like you going through the reality moment. The past week has been my hardest week connecting the dots of what I need to do to stay sane, rest, work and life balance. It is so so hard and it is your own brain and mindset that will either stop you from moving on or for me being pig stubborn.

This week I have taken a week off work sick as my middle name 'Overdoit' kicked in last week and I was a wreck on Monday. I have told work I need to reduce down to 4 days a week till I work through MTX whether it will work and help me on my flares etc. However I also needed to realise my performance was not as great in recent weeks due to the fatigue.

So I wrote them a letter on my fears, my fatigue and my needs and theirs. It was an honest account backed up with a NRAS leaflet on fatigue (worth reading too) and I know feel I have passed my first BIG hurdle in acceptance.

Stay sane be kind to yourself and figure out what you need and want out of it all.

Dee x

[Pippy25 in reply to Hidden]

Yes I can relate to your middle name of 'overdo it' and should know better by now. Take care

[RosieA]

I was diagnosed about 9 wks ago and as you say reality slowly seeps in. It's a little like mourning your old self. I do feel a little bereaved at times and miss the 'Pollyanna" part of me. I used to play an instrument but have not been able to do so for 6 months, it was a large part of my life. Now I am trying to adjust and find new passions and look at some old ones as I love being creative.

When I am feeling particularly rough I give in to it a little and try to be kind to myself. A great book, a favourite film (I'm sadly nearly word perfect on a few), a tasty treat and give myself permission, rather than feeling lazy etc, so trying to get a positive slant on it. It is different but am learning that it helps me and those around me as some of the tension is released, which in itself tends to help the fatique.

I have discovered that the bursts of energy and whizzing around are no longer in my repetoire ( well not at present). The RA 'fog' is tricky and at times I don't trust myself to make sensible, informed decisions, so I don't unless essential, most things can wait a day or two.

Anyway, here's to the Pollyanna in us all, just thinking of her makes me smile. Hope this helps in some small way. It's all such a personal journey.

[Pippy25]

Some really good advice from all here. It's hard getting your head round this disease at the best of times, but more so when initially diagnosed. I think the key thing is acceptance. We are all in this together for the long haul although I wished we weren't. Take each day as it comes and as Oldtimer says enjoy life. It may not be in the fast lane or how you had envisaged it but live it to the best you can be. Again pace yourself, don't be too hard on yourself (I'm my own worst enemy on that one) especially if you can't achieve all you think you can in one day. It will be hard for family and friends to understand this complex disease but keep talking and perhaps find different or new ways of doing things together. I describe my fatigue like trudging through sticky tar up to the waist in a fog. Some days it is fine, or better and other days it's like wading against the tide of tar in a pea souper of a fog and I need to rest more. Everyone is different and your RD and Lupus is unique to you, your path will have common ground/ experiences to others but will differ in other ways. What is nice though is that people here will help support you as much as they can. So take care and sending some warm wishes.

[charisma]

Hi, lots of others hAve given good accounts to help you but I’m wondering if you’re taking Hydroxychloroquine as it definitely creates brain fog which improves after the dose is halved... but our RA brain fog also comes along with fatigue.

In combination with Lupus/SLE is a bit more complicated! I hope you can manage both and help that along with balancing activity and rest. Take care of yourself. 🙂

[stbernhard]

I totally understand Summerrain. I am in remission for the last five years. When I was diagnosed in 2009 I went from active every day to barley able to walk and not being able to hold a knife in two months. At times it was so hard to stay positive and keep mobile. Fatigue caused by constant pain doesn't help either, but is for many a unavoidable partner of RA. As you see there can be light at the end of the tunnel and I am very lucky to have got there.

My advice to you is to learn as much about RA and the treatment, including self management. In my opinion the best source of information for that is the NRAS website and the NRAS help line. I have facilitated self management courses and from the feedback I know that it helps a great deal. All the best. Be kind to yourself. Be patient. Set yourself small targets and reward yourself when you have achieved them, but never beat yourself up if you don't at first. I stop preaching now. Take good care.

[Kerensa21]

google.com/amp/s/amp.thegua...

Some great answers above, read this at weekend. It’s not aimed at people with RA but really resonated with me x