How to push for a diagnosis and treatment

Hi. I'm in my 30s and for most of the last 10 years my joints and quality of life have been deteriorating. I am a plus size person due to pcos and a bowel condition and it seems I wait months/years to see a rhumeotology doctor and they rip me to shreds about my weight and discharge me unwilling to do anything else. I am on treatment for my weight but have been refused surgery because of my medical health so im backed into a corner.

The last rhumetologist I saw in 2021 dismissed endocrinology being involved, told me calories in and calories out and said testing me would be a waste of resource as she wasn't willing to offer me any treatment irrelevant of the results of a test. This is completely true.

I was diagnosed with OA and fibromyalgia in 2019 and that rhumeotology doctor told my GP to try a number of medications to help manage symptoms but they've refused to even try each one due to risk of weight gain. That doctor also dismissed swelling in several joints at the time (seen on a scan).

I had nhs physio but that was basically do some exercises and discharged after a few weeks.

I've been paying for private physio and managing pain with acupuncture but I'm now at a point where my fingers have bowed and are out of shape. My hands, feet and knees are so swollen acupuncture doesn't work as they can't get the needles into the right place. I just bruise horribly. I've lost function and use of my joints and have nerve issues and pain - neurology have dimissed the fibromyalgia diagnosis for polyneuropathy. Physio and GP believe there's an autoimmune issue but I'm negative for most markers. I do have very high CRP, ERP, C3 and C4 and white blood cell counts. I am chronically iron deficient and struggle with folate too. I also have swelling in my kidneys and arrhythmia and have been hospitaled several times with significantly high levels of inflamation.

I've never suffered aniexty or been very sensitive emotionally but I'm terrified of seeing another rhumetology doctor. Of course I have to and I'm booked into the early inflammatory arthritis clinic in April. Partly because I can't face being treated as I was in 2021 and partly because I'm in so much pain and detoriating I can't face being fobbed off yet again.

Can anyone help with ways to assert myself to push for treatments/diagnosis and may suggest what kind of conditions or tests maybe relevant.


  • Ellen
    Ellen Moderator Posts: 1,300

    Hi @gingercat Welcome to the Versus Arthritis online Community.

    Getting a diagnosis is an issue for so many people here unfortunately you are so not alone. Your previous experience with Rheumatology has been so upsetting that I totally understand your anxiety about going again even though you clearly need to now.

    This time you are going with evidence of 'something' your blood results and the referral from your GP likely indicating what he/she suspects.

    I suggest that you take someone with you to your appointment to support you and that you write a short succinct list of what is happening to you, when, for how long and how it is affecting your day to day life.

    I was trying to locate some useful links for you and came up with the following. This is an old 'read only' thread:

    and this is information about what a Rheumatologist does:

    I'll leave it now for some of our members to come along and share their own experience with you.

    Best wishes