In your experience with inflammatory arthritis is there any place or thing that has really helped you?
I've been looking on social media and found a podcast about RA (Cheryl crows , not the singer though !) And its great but wondered of there were any British ones. No offence to the USA ones x
Just wondered if there were any particular books that really helped you get to grips with your condition especially getting your head around it ,.or other forums or blogs ?
I'm not really into being blagged things, so when they start talking about their "programmes" which cost x amount that is a no no.
Thanks for your help x
Written by
Marionfromhappydays
To view profiles and participate in discussions please or .
Hi Marion. I can honestly say that the NRAS Website and this forum have been the very best sources of information for me. I do also look at the Arthritis Foundation (arthritis.org) and Creaky Joints (creakyjoints.org) sometimes too but they are not specific to RA and are US based. I’ve not found any books that have been any more helpful but would be pleased to hear if anyone has.
The person that helped me the most was the occupational therapist who took me through what I need to do each day and how I do it, advising alternative ways to prevent putting strain on the joints. She didn't judge how much pain I was in or what I needed to do or tell me not to do things, just practical matter of fact advice.
RA Consultant and specialist nurse years ago now, but I did go to NRAS local meetings which were hilarious before Covid struck. I'd recommend seeing if anyone in your area is doing a Zoom meeting. They aren't here but you might find a local contact. The internet is good but sometimes its nicer to talk to a face not a machine.
Book? Take Me Home from the Oscars: Arthritis, Television, Fashion, and Me by Christine Schwab.
A very interesting read and made me so aware of how far RA treatment has come.
The Inflamed Mind: A Radical New Approach to Depression a book by Edward Bullmore is also enlightening and there is a bit about RA in it.... thought provoking stuff!
Apart from listening to my rheumatologist ...I just coped day by day....I reckoned having RA was quite enough, I didn’t want to read about it ...Well not the daily management of it( I did read the scientific research): ........but even written by well meaning folk I always got the feeling I wasn’t doing something right .....then I woke up and decided I was a big girl and I would sort it myself, with the help of my rheumatologist. Wayback when I was diagnosed this site was not around.
There is a lot of good advice here and it’s all free.Everybody deals with this disease in a different way.....& you might come across helpful suggestions or more important definite No No’s that gel with you.
Most importantly Believe your drugs are going to work ....if you can read all the stories of the horrific side affects some people suffer, and not immediately think it’s going to happen to you - okay go-ahead and read them, but if you are the sort of person who takes it to heart and thinks everything everybody else has, you are going to have just don’t read them.
The early days are definitely the worse ....so just trying to be optimistic and think this time next year today it will just be a memory.
None of those things were around when I was diagnosed and I couldn’t hold books to read them so all I had was my rheumy and nurses. In some ways much easier as I just took what I was told and got on with it but sites like this and NRAS etc would have been helpful and a great support. If only 😊
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.