When you were first diagnosed with arthritis, what was your doctor's initial advice?

[MaddieHU]

What were the good things you learned at diagnosis? What worried you most about the diagnosis?

Share your experiences and interact with other members in the comments below!

[Deniseelk]

I was comforted that my Rheumatologist took my case seriously, was very proactive and insisted I must get on the drugs immediately or I will be deformed ( and demonstrated with his hands). He always listens to me and follows and respects my views of what I want . I did leave feeling very confused about RA and it took me a long time to find good, accurate and reliable information and sites. I would have appreciated leaving with a pack of information/ websites and contact numbers. My Rheumatologist never talks about my future ( which frustrates me as I worry) but I have to trust him. I never have to beg for tests, he is always on the ball with investigating as issues arise. I do wish I saw him more frequently, after starting Benepali it was a year ( no tests at all since) and only because I have inflammation again which needs to be investigated and I called for an appointment.

[Patient0]

When I was diagnosed, I had only expected to find out that I had a broken toe. It was a relief in one sense that all these ambiguous symptoms that I have had for years were actually linked and treatable. I also felt lucky that it was caught early. I felt like less of a hypochondriac.

I also studied Biochemistry so I have always looked for links in my health conditions but I never expected arthritis to be so elusive. I thought I would know that I had it. I already had psoriasis so I knew there was a chance that I would get it. I was a bit disappointed that the GP didn't pick up on it and also didn't test me for gluten intolerance.

I was worried about how I might deteriorate over time. I had been in a lot of pain for a long time but never really worked out what was happening because the symptoms didn't occur frequently in the same joint. I had had pain in my foot, knee, neck, back and hip but I had also just had my second child and a lot of stress in my life. I was in the middle of a major life crisis before the diagnosis, while also being responsible for a 2 and 3 year old. I was overwhelmed and being a scientist, I wanted to fully understand the disease and be in control of my treatment. I was also back at work after my maternity leave and felt really stressed.

I didn't know what my new normal self would look like because too many things had changed in my life in such a short space of time. I wasn't sure how much of it was due to my psychological state and how much was just the disease and whether just having children would be the reason for the change in my health and energy levels.

So, I thought about decreasing stress, improving my diet and trying to work on getting a bit better without medication. The best thing about diagnosis is that it forced me to take care of myself. I had been putting myself last for a long time. This was my wake up call!

[GoatGirl56]

What worried me most was learning about the "side effect" diseases of RA, like lung and heart. The only good thing was that my take-away from this was that I needed to go full-throttle with my exercise and diet - not just for the RA, but for my whole body.

[Alexplode]

I was not given any advice just a leaflet on methotrexate. A further appointment was given for 4 months later. I really had to research the disease myself. Unfortunately methotrexate was a fail for me by which time more painfull joints had joined the party.

[Caza]

Struggling with this question. I’m not sure I learnt anything good on diagnosis. It was all of a bit of a shock really. I knew nothing about RD at all & I was hit with RD IOA & Palindromic Rheumatism. Nothing really was explained, I remember making a joke & saying well that gets me out of the housework then, only for the rheumatologist to give me a stern talking too saying that this was a life changer & I would really have to pace myself & rethink things. I did learn to trust him although he isn’t a ‘peoples person’ I feel he listens & has my back. He has never pushed meds onto me knowing that I’m really not keen but does/encourages me to accept what I need to take now. He sees me often & I’ve had every sort of test you can get.

I think I worried most about telling people, stupid I know, soon realised that all without exception don’t really want to know that’s including family. It makes life really difficult as allowances are never made. I guess I feel very much on my own with this & thank goodness for forums 😀

[Bothamsall]

Luckily I lived in Canada in 2005 and was seen very quickly by Rheumatologist received all tests had high Crp and also blood showed positive for RA and received about 6-7 drugs including methotrexate I walked lobsided was told to use walking stick I had swellings of all major joints looked like a witch and could only walk very slowly some days I had to crawl found it difficult to dress etc was a complete invalid took about 2 hours to get out of bed and get joints moving very slowly

[RADave63]

I do not like the term Arthritis, Should be called Rheumatoid Disease it is not same as just Arthritis. By the way I Will not take the poison drugs the Rhumies want you to take! Look up Clint Paddison plant based cure. It works better than any drugs!!!

[nakkita]

Lies followed by lifestyle of despair going from one horrible drug to another! Until I made food my only medicine and went plant based and have dad zero symptoms since!

[Suki63]

No advice about my condition given to me about rheumatoid by my doctor apart from keep to the appointments made every 3 months by the hospital and I could then ask questions to the consultant. When querying what rheumatoid was my doctor said wear and tear Ivan!...at 28 years old!