Thank you to everyone who kindly asked me questions regarding my RA to help me in my mission to educate and inform people what it is like to live with this condition. I am very grateful!
I hope my responses answer your questions well and you feel you gain a better understanding after reading this post.
1) How does RA affect your eating habits?
I don't really think it has changed much in terms of what I eat. However, I do notice a difference when I have a week of eating particularly unhealthy, I feel the start of a flare-up or feel absolutely exhausted. So I guess I try to just eat a balanced diet but don't feel I have made any drastic changes since being diagnosed. I still treat myself to a KFC probably a bit too often! Also, before being diagnosed and when my symptoms weren't under control I struggled a fair bit with cutting up food due to pain but it didn't really stop me eating it.
2) What medication are you on and how often do you take it?
I am on Naproxen which is a Non-Steroidal Anti-Inflammatory Drug (NSAID). I take it as and when I need it but while on placement I feel I benefit more from taking it 3 times a day.
I am also on Hydroxychloroquine which is known as a Disease Modifying Anti-Rheumatic Drug (DMARD) which helps tackle the underlying cause rather than symptoms. This medication has worked wonders for me and I take it once a day.
3) What was your initial reaction to getting diagnosed?
Initially I was actually quite relieved. I finally knew what was causing the painful and swollen joints I was experiencing. I was also a bit confused as to why I was being diagnosed with a condition I had previously associated with 'old people' at the age of 18. Then after reading up more about the condition I did start to feel anxious about impacts it may have on my future. I found myself on google and the NRAS website a lot, trying to make sense of it all.
4) Had you heard of RA before getting diagnosed?
I had heard of it before getting diagnosed but this was only because I was having symptoms for about a year before getting diagnosed and naturally took to googling what it could be while the doctors weren't doing a whole lot to help me get tested. I had heard of arthritis but was not aware of the specific types and how they differ.
5) What part of your lifestyle has it affected most and why?
More recently I would say it has affected me on placement the most, so in the career aspect of my life. This is because on my first placement I began to realise the impact this condition may have on my future and it was the first time I felt my RA was limiting me in my ability to do what I could do previously. I think it was on placement where I first cried about being diagnosed due to the reality of it hitting me. Also it was brought up in conversation most days while I was there. This was something I was unfamiliar with as most days prior to this experience I could just crack on without it crossing mine or other people's minds. It is more of a 'fear of the unknown' type of feeling as it is such an unpredictable condition with both physical and psychological impacts.
6) What is the biggest change you've made to day to day tasks?
I can't really say I've made any changes to my day to day routine or tasks. Only when I have flare-ups I will probably change the way I do things and try to do less throughout the day so as not to aggravate pain further. This also depends on where the flare up is. If in my hands or wrist I would probably just use the other hand more or hopefully have someone around to help! If I have a flare up in my shoulder, again I would use the other arm more for doing things like lifting and try to sleep on the other side, although shoulder pain does make sleep very difficult.
7) What are other treatments apart from medication?
As a physiotherapist in training I guess I should probably say physio and exercise. I haven't had any physio for it myself but since I started using the gym more regularly and becoming generally more active I have noticed a reduction in symptoms and just feeling more energized. But to those with RA and not much knowledge of what exercise you can do and how much, I would definitely recommend talking to a physiotherapist for guidance.
8) Would you ever consider surgery?
At the moment I probably wouldn't. Firstly because I don't feel like I need it at this stage and also because I would rather try other management strategies before resorting to surgery, But if i needed it later on in life I would be up for it if it were to improve my quality of life for the better!
9) What does RA affect most in your day to day life?
At the moment I would say fatigue is the biggest problem for me. By the end of the day on placement, getting back to my bed to nap was almost unavoidable. Like I know being tired after being busy is normal but this kind of tiredness feels different to anything I experienced before having Rheumatoid Arthritis. As I progress through placements, I am attempting to come up with better ways of managing it.
10) Does RA/the associated medication effect your mood? And if yes in what way?
As far as I am aware, the medication I'm on hasn't affected my mood and I don't think mood changes were listed as side effects. However, the RA itself can effect my mood occasionally. It's not like I am down about it everyday or anything but if I am having a flare-up it can effect my motivation to do things which leads to overthinking and worrying. But I try not to let it get to me and my friends and family do a pretty good job at allowing me to forget about it.
11) Have you ever let your RA stop you from doing anything?
Ermmm.. I don't think I've ever thought to myself 'I can't do that.. I have RA' but I guess of I'm in pain that day I will make careful decisions not to do anything that will cause further pain. But on the whole it hasn't stopped me going to uni, going on nights out, socialising, having a part-time job, going on holidays or exercising (most of the time). I have a more 'don't knock it until you try it' kind of approach.
12) What age were you diagnosed?
I was diagnosed at age 18, in late 2013.. I am now 21. Started getting symptoms when I was 16 or 17.
13) What does a flare up feel like?
The affected joint normally feels hot to touch. I normally have visible inflammation with a noticeable difference between right and left if only one side is affected at a time. Also PAIN.. the main thing which is felt! Describing pain is always difficult but the words throbbing and burning describe the initial feeling which after a day or two becomes more achey and heavy. I also feel a lot more tired than usual and often can't sleep, ironic ay?! When I first had symptoms before seeing the rheumatologist and getting treatment, I did occasionally use to feel sick as well because the pain was so bad.
14) Does arthritis run in your family?
No, well not that I know of. Strange though as RA is normally genetic so getting diagnosed was pretty random for me.
15) Does having RA effect activities you used to do?
I don't think it has directly stopped me doing something. I did give up running but it wasn't because of being diagnosed and I have gone on runs since and have been fine with it. I have even taken up new activities such as going to the gym so it's fair to say the diagnosis hasn't had a drastic day-to-day effect.
16) Does your diagnosis make you feel angry or optimistic?
Hmm. I can't really say I've ever felt optimistic about it but it definitely hasn't been all negative. When I was first diagnosed I can't really say I was angry; I was relieved to have a diagnosis of something so I could start getting the right treatment and know how to manage it. When it impacted on my performance on placement I can't really say I was angry still because there is no one or nothing to really direct my anger or bitterness towards. It was no ones fault, it is just one of those unfortunate things but in my opinion not worth anger. I did however feel upset and anxious that this diagnosis will be with me my whole life and throughout my career. On my next two placements though I experienced minimal problems and was better equipped mentally to deal with the flare ups. This did give me hope that it won't always be bad and I can still do what I need to do to become a physiotherapist and I just have to adapt certain techniques and learn to manage stress and fatigue.
17) Do you ever think about the effect RA may have on your future?
Yes, it has crossed my mind a fair bit. The typical pictures you see associated with RA are of hand deformities caused by the RA and it does make me think "is that my future?" but at the same time I can look at it the other way and think there may be many new developments in research about treatment and management of arthritis. Also by keeping active now and attempting to do all the right things will hopefully minimise the damage in the future. At present it has only ever really effected the career part of my life and not any other aspect so it is hard for me to think about the effect it may have on other areas in the future.
18) How do you cope with the bad days/flare ups?
I like to think I deal with them pretty well now. I normally just dose up on anti-inflammatories and try to distract myself and hope the pain doesn't stop me from doing too much. But then again it can depend what I'm doing on the day. If I'm busy/need to get a lot done such as on placement, I realised the importance of telling my colleagues so they know I'm not just taking it easy for no good reason. Before seeing the rheumatologist I was not good at dealing with them both physically and mentally. Physically medication wouldn't touch the pain at all, I couldn't sleep because of the pain and on top of all that I didn't know what was causing the pain so altogether a stressful time.
