I was diagnosed with rheumatoid arthritis last month after multiple visits to my GP and a couple of different specialists, and I’m still trying to get my head around it all. It’s a lot to take in, but I’m keen to take control of my health and manage this condition as best as I can.
I’ve been doing some reading about managing RA, and I’ve come across a few ideas that I’d love to get your thoughts on:
I’ve read that keeping a detailed record of symptoms over time can really help with understanding patterns and making treatment decisions. Do any of you use symptom tracking tools or apps? How often do you use them, and do you find them helpful when discussing things with your doctor? I've come across a couple (Elsa, Bearable etc.,), and I'm not sure what's the best option.
My doctor mentioned that certain biomarkers (like inflammation levels, etc.) can give valuable insights into how my RA is progressing. Has anyone here been regularly monitoring their biomarkers? If so, how do you keep track of this information, and do you think it makes a difference in your treatment? I'm unsure whether the doctor will trust any blood tests that are done outside their recommendation.
In the past years, I was referred between multiple GPs, specialists and surgeries for a knee injury.
I found it extremely frustrating that my health records were never shared between NHS institutions. I had to move around with a glossary of records every time to my appointments and share it with my doctor. This resulted in multiple appointments with private specialists that were not needed, setting us back over £3000. I’m curious about how you share your health data with your doctor. Do you bring printouts or use any specific tools that allow your doctor to see your records?
I’m keen to hear about your experiences and any advice you might have. I’m hoping to find ways to be more proactive in managing my RA and to make sure I’m doing everything I can to work effectively with my healthcare providers.
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stefa010923
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Hi I don't use a app but if I am going through a tricky spell I note down issues and look at my blood results on patients knows best electronic system. This is the hospital system that shares with me and gp my blood tests. They don't always correspond on my pain levels but if I have a cold etc you can see levels go up in certain areas and they show you whether you are in range don't get too focused on this though. It will take over and worry you. When I have had health issues I have asked for vitamin and thyroid tests to be completed and they have done this. I have asked for podiatry physio anything that helps look at exercises that you can do and eat and drink as healthy as you can. I help myself by massage. Relaxation aids gels aids for the household listening to my body but not always ha and not allowing it to my rule my life. Best of luck took me almost a year to come to terms with it.
Well…I was diagnosed back in 1997…way before a lot of the drugs & treatments now available were ever thought of.
If Forums like this existed…I didn’t know about them, but I do think access to rheumatologists was very much easier & simpler…but now there is much more choice.
Yes RA. was agony sometimes …& I spent a lot of time in my PJs because it was too painful to get dressed. I couldn’t believe my diagnosis…I was a healthy woman who played tennis everyday,,,,,,how could I suddenly have RA?
So bottom line ,I just took the meds I was prescribed, made a note of how they affected my symptoms & just got on with it. You are unfortunate being diagnosed so young…but don’t even think of letting RA rule your life.Do listen to your medical team…not everything needs to be complicated.
On the whole a brief note to your rheumy or the nurses suffices when a particular problem appears …there isn,t the luxury these days of long conversations to discuss the minutiae with a NHS rheumatologist. But do ask your rheumy nurses if there are any Apps they know of that patients have found useful.
So as I said…don’t let RA overtake you…& don’t think every new twinge means too much. …enjoy your life as normally as you can.It’s not a walk in the park…but it can be dealt .with.
I don’t expect you will find many people who will agree with me…but taking life as it comes is the only way for me….& reading in various forums of all the effort people put in to “controlling” this disease…has convinced me not to even try.
I hope you find the way to live well with RA….everyone’s way will be different.
I found in the beginning it was best to keep a journal. So I knew what was going on with me and medication and how I responded. Not an app BUTbit worked well for the first 2 years and now just have a paper file for appointment and notes etc.
I have found no consultation has ever read a piece of paper with my info or concerns on so I now do a reminder sheet to make sure I cover off the important things as time is usually limited so BIG concerns must be sorted/discussed.
All Of us different some want lots of info some prefer basic. Choose what’s right for you. Don’t over think but if your body does not feel right make sure you ask. NRAS great for help and for me, my GP team are onboard too, so they are first port of call for general issues and if they can’t sort they tell me and I call RA team.
I’d say Aged and Deeb have given good advice, we are all different but a diary is helpful even if it’s just to remind you how bad you did feel when you start to feel better. My only suggestion in addition is to use your mobile phone app Journal and photo any swelling as an aide memoir. Appointment times are limited and sadly the NHS is so compartmentalised that different disciplines are not often looked at as one issue but that is understandable however if you have a condition that impacts the RA then they do communicate. My Nephrologist has an input into the Rhumatologists treatment of my disease. This is because CKD limits some of the medications used. So it’s not straightforward but the system does work.
I think the advise others have given you is brilliant. One thing though is if you ever feel down or lonely when people don't understand, come on here and rant and rave, scream or moan and I can guarantee we'll all be here to support you. The ladies and gents here might be a little crazy at times but we know what you are going through. No question is too small or silly, just ask away. It will get better just hang in there 👍
I tried the App "rheumabuddy" for a trial period, I found it an interesting experience but I did not continue with it because I had no way to download or save the data I entered.
I watched a youtube video from Uni Manchester and a paper recording sheet for tender and swollen joints, I fill it in about once a week when I have my feet up for a rest and I find it quite interesting how the swelling moves from place to place and I find it an encouragement if I realise I am getting better.
I signed up for the PAIN PATH study research that NRAS have been sending info about, they have a dashboard where you can look at the info you have entered so far and somebody can make use of it for research as well.
I was asked and agreed to genetic testing as a research project at my hospital in partnership with other hospitals . There’s 3 and gave a lot of blood agreed they can look up info and did my “homework” it won’t help me but will others in time as they are looking for the gene and know I have the pANCA thing so antibodies at a nuclear level. The whole thing was explained but some went over my head. I’ve been contacted now by same study to do cognitive tests so I did that yesterday. It was like the 1% club where I can get the 15% question and sometimes the 5 but rarely the 30% ones. I don’t know how I did but know I got the memory ones right and the maths but got muddled on the shapes. I think it’s great that science is really looking at huge advances in years to come.
I've never used any app or the like to record symptoms etc., as dx. in 1971 as a child when there were no apps, mobile phones or internet and you just did what you were told!
Blood test monitoring is done by healthcare assistants at GP Surgery and sent to local hospital for testing where I see rheumatologist. Both use online systems, My Chart and Systmonline which do 'talk' to each other so rheumatology have access to results and I don't need to do anything.
I do check my blood results each month online, in particular ESR, CRP (inflammatory markers) and FBC (full blood count). Usually they are 'normal', 'satisfactory' or occasionally 'borderline'.
I don't think I am the sort of person who wants to spend time and effort using apps or writing journals, but it might be useful for some.
As suggested above the NRAS. the charity which moderates this site is an invaluable source of reliable information and support.nras.org.uk/get-support/
They also run a helpline Mon-Fri 9.30am to 4.30pm 08002987650. While this forum is great nothing beats talking. Their booklets are also so helpful, especially at the start of the journey. Also be aware that folk tend to come to here when new or having a problem. We are not representative of the many thousands who get settled on medication and get on with their lives with little adaptation. It takes a while but there is light at the end of the tunnel. Good Luck.
Lots of good ideas here on here. The more data you have the more proactive you can be about your illness.
In the beginning, before I was stable, my excel spreadsheet of blood results was invaluable, as was my daily record of pain levels, ability levels and general wellness.
It took me a year or longer to realise I needed the latter, particularly as at first I had palindromic arthritis, where the symptoms came and went.
Doctors like data - ie pain levels etc measured out of 10 or 100. That way they assess severity and change. The more you can monitor your disease yourself the more in control you will be.
I used apps to do this simply as an easy record that I could refer to over a given period.
Hopefully your treatment will be effective but it’s still worth arming yourself with a journal of symptoms, however you record it, as you are the best judge of how it’s going.
Others have given good advice, I wouldn’t get bogged down with it all. Eating healthy and avoiding ultra processed foods, will help keep inflammation under control. Your rheumatologist will dictate what bloods are needed, and how often they’re needed. Most surgeries allow access via their own app or the nhs app. Although bloods taken at the hospital, often don’t appear online. I wouldn’t stress about results, if your specialist is concerned, they will contact you. Also inflammatory markers, just tell you there is inflammation in the body somewhere, which could also be an infection or injury, as opposed to RA. I have specialists over 3 Trusts, one sends to my rheumatologist to keep them upto date. If it’s connected to my rheumatology diagnosis, then I will forward a copy to the relevant other.
Hello Stefa, welcome to this forum. Whatever your question, you are likely to find someone who has gone through the same or similar.Yes, keeping a record of your condition, physically and mentally is a valuable tool for you and your care team. There are many apps, but to start with I recommend that you become a member of NRAS. It's the best source of information and help. They have an app called Rheumabuddy which may be useful to you. Take time to learn as much as you can about medications available but most importantly on self management.
Like others I write in a diary every day (actually, a table set up in Pages (like Word only for Mac computers) and I use a spreadsheet for numbers for how I am feeling and how much pain I am in. No doctor has every looked at it!
We have found that a lot of doctors don't take women seriously, even when they present the data to them. When I was presenting the data from my son's tracker to a cardiologist he dismissed it without looking at it and said no scientist would ever accept that. I pointed out that not only was I a scientist but I was doing a PhD in computing and that the data was presented in the standard way for this type of representation. He sort of backed down, but he still didn't take on board the data.
There are loads of apps out there now, because everyone thinks they are a way of making money, and everyone seems to think they can be a software engineer without studying it in university or getting any qualifications. So there are some apps out there that really aren't worth it. Especially when you can basically do it all yourself in a word processor or spreadsheet.
And every NHS area, know as an ICB, will have different software for patient records. in some areas they are interoperable so that consultants can see the blood test done at GP surgeries, but in other areas they aren't and the patients have to take the data with them. In my area I was given a little booklet to write my blood test results down when I had them done at the GP surgery. Which was ridiculous as I knew that we did have a system whereby blood test results were shared between the hospitals and GP surgeries. It was just that both refused to look at it.
Something else to remember about these apps is that they may not last for ever. Even if you don't pay a subscription someone will be storing that data in a cloud server somewhere. All it takes is for them to not pay the bills and you have lost your data. That happened to us with Jawbone. It was a really good tracker for its time, but with no warning the servers were turned off before I could download the most recent raw data so we lost several months of data.
So if you have the opportunity with an app to download the data, make sure you do or you may lose it for ever. Which is why I keep using the old spreadsheet to track my blood test results and pain levels myself!
I (m70) had Stills disease 65 years ago at age 5. You should definitely keep a diary and record meds and health, but also what you had to eat and drink every day. You may find that particular foods may induce flare-ups the next morning. I found when I was 60ish and after buying bread machine and eating a lot of my own bread that flour and grains caused really bad flare-ups the next morning. I gave up all grains and it has really helped. Different people may have different sensitivities but if you have a flare-up or just a really bad morning, you can look back in your diary to try to see common patterns (e.g. the day before each flare-up you ate pizza or bread or a certain fruit or veg or sugar, etc. ). If you think that food may be affecting your pain events, look up the AutoImmuneProtocol (AIP) diet plan which is specifically designed to try to trace foods which may irritate your immune system. I would also advise you to avoid excessive exercise and joint wear as you will suffer in later life. You should exercise and keep fit of course. Your doctors wont be around in 30 years time to see your grossly deteriorated and painful joints from all the sports you did, but you sure will! 5%-10% of people with RA also develop celiac disease in later life but doctors don't seem to think it is important to tell us this or think that it is relevant!
I keep a note of what I ve eaten and pain levels and any exercise I m able to do. I ve noticed that I feel worse if I eat tomatoes, peppers, strawberries and potatoes. I feel better the next day if I ve exercised, eaten a lot of veg. I agree with eating cleanly - I have delicious home cooked meals including yummy spices, no processed food or gluten or refined carbs, sugar or processed oils. Having eaten this way for 5 years I find it has reduced pain levels and weirdly I m no longer allergic to cats and dogs! We re all different of course. I also find Vit D (sunshine) helps me. If I can't exercise I lie on a vibration mat to get my lymphatic system moving once a day and I ve found this helpful.
I was diagnosed twelve years ago, started treatment eleven years ago, short answer to your question is no I don't use any apps.
For me managing my condition was having all my initial questions answered by the specialist nurse. Learning to call the advice line sooner rather than later when a flare occurs. Covid caused a few hiccups in continuous treatment but now back on track.
My RA team would be happy for me to have blood tests three monthly but my GP prefers monthly (covering their back) to keep an eye on MTX effects. I'm able to check my blood tests on NHS site.
I put my appts with RA dept in my calendar on my phone with reason for the appt , that way I have a record of treatments.
Otherwise I try to do exercise and have a diet that suits me. I also use massage more in the winter time which I find helpful.
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