Helpful advice I wish I’d received

I’ve been contacted by a few people over the years about how helpful my blog has been, and how good it is to connect with others with the same condition. I have been thinking about how frightening it was when I was first diagnosed, and how much I would like to have had some advice about how to get taken seriously, and how to handle appointments with health professionals – whether it’s the GP or rheumatologist. So I thought I’d put a post together with some hints and tips for people.

Before Diagnosis

  • If you have yet to receive a diagnosis, it’s going to be really important to collect as much evidence as you can about your symptoms. One of the ways of doing this is to keep a diary EVERY DAY of your symptoms. There are apps to help you do that – such as rheumatrack – where you can record your pain and locations of your flares. But you can also just write down every day – where you are flaring, and how bad the pain is on a scale of 1 – 10, or even 1 – 100.
  • Keep a record of all of your other symptoms too – include fatigue or anything you think is weird or unusual. It may, or may not be connected, and it could be helpful when someone is trying to diagnose you.
  • Take photos. If your flares are very obvious – so there’s lots of swelling, a rash, or you are getting nodules, or severe redness, take photos. The chances are, things may have gone by the time you actually see a medical professional, so it’s good to have some photographic evidence. Here’s what someone from the FB page said helped them:  “As soon as I had anything visible I would snap a picture. I would then continue to take pictures every time there was a change until the appearance of that joint returned to baseline. I also kept a detailed diary of symptoms to go along with the photo timeline. This really helped the doc see what was happening even though I wasn’t in an acute flare by the time I got to the rheumatologist.
  • If you already suspect you have palindromic rheumatism, take some information about it to your health professional. There is some good information by Arthritis Research UK which you can download. You can also request a booklet (if you live in the UK) which might be better to take into the appointment with you. The trouble with PR is that some doctors and even some rheumatologists may not have heard of palindromic rheumatism. Some don’t even believe it exists! So it’s good to have some information from a reputable organisation to show them, rather than just say ‘I read on the internet’, which they often won’t take seriously in the same way.
  • Ask for a referral to a rheumatologist if you have not been offered one. PR looks very similar to rheumatoid arthritis in the early stages so they should take you seriously and do this.  You might also ask for a referral to a pain management clinic if you are having trouble coping with the pain. Some areas offer pain management courses, which can give useful tools and techniques to cope with chronic pain.
  • Another tip from someone on the FB page: “Really beat your point into the ground with examples/schedule of your impairments- eg- I slept 12 hours Sun night and could not get out of bed until 4pm Monday (Doctors thought I was exaggerating). Don’t be pushed aside with secondary diagnoses (ex. anemia, stress) and negative blood tests. Come prepared with a list of diagnoses to discuss”.

The appointment

  • You might like to take someone with you to your appointment. I have certainly done this on occasion. They might be there just to provide support and not say anything, or you might like to ask them to write down some of the things the consultant says to help you remember.  Appointments can be very overwhelming and I know that I can sometimes go completely blank  and forget everything that I’ve just been told. If you haven’t got anyone to take, you could ask if you could record the conversation on your phone to help you remember. Or just write down some of the important things that you are told.
  • Write down the questions you want the consultant to answer, and remember to bring this with you to the appointment. Questions might include things like –
    • What condition do you think I have – why?
    • what treatment is available?
    • what treatment are you considering? Why?
    • what are the likely side effects?
    • how long will I need to take it before I know if it’s working?
    • What other conditions might cause these symptoms?
    • If this medication doesn’t work, what will you try next?
    • Ask what support services are available – my rheumatology department has VERY good rheumatology nurses who are at the end of a phone when I have something crop up that can’t wait to an appointment.
  • On questions, here’s another tip from FB: “ I really questioned and asked for explanations on everything I was told. I was honest when I didn’t agree and went back with questions – always open ones the what,where, how,why,type. Don’t be afraid to question – medical professionals don’t always get it right”.
  • Inform yourself. Sad, though it is, rheumatologists don’t have all the answers and many don’t bother to tell you some very important information that you need to know. Again, the booklet and information from arthritis research UK can be essential.
  • Ask what blood tests they are requesting and ask what the results mean when they arrive. If your blood tests are negative, remind the rheumatologist that this is not uncommon for many people with PR.
  • If you are not happy with the appointment, find out who else you can see in the department. if you are not seen by a consultant, you may be seen by a registrar who may not be that experienced and who may never even have seen someone with PR. If you aren’t happy with who you’ve seen, seek a second opinion or find out how to get to see the head honcho. I now have the consultant secretary’s phone number and she can be very helpful in making sure I see him.
  • The Facebook group is a great source of information on what medication other people are on. I have used this to ask to try a medication to take during flares that someone on FB was taking. It didn’t work, but it was worth a try. So you might say something like “lots of people on the Facebook group for people with PR are on hydroxychloraquine. I would like to try that”. If you are connected to the FB group, you will already be in touch with more people with PR than your GP or consultant may have seen!

Resources:

  • Inflammatory Arthritis Pathway:  This page on the Arthritis Research UK webpage is very useful. Palindromic rheumatism isn’t listed on this page, but it is a type of inflammatory arthritis and should be treated as such:
  • Arthritis Care have a great helpline staffed by volunteers. Sometimes it can just be really helpful to talk to someone who understands. They have a web page with some info on PR too and a factsheet you can download:
  • Creaky Joints has some info on Palindromic rheumatism
  • Arthritis Foundation is a US-based arthritis organisation. It has a page on PR
  • If you live in Canada, your local arthritis organisation is The Arthritis Society
  • The Facebook group is a good source of support. Do a search on The Palindromic Rheumatism Group and send a request to join.

Feel free to add some hints and tips of your own by making a comment. Thanks for reading.