In 2008 I was firstly diagnosed with Coeliac Disease which was a great relief! I had been suffering so much with tummy problems. But I was still having lots of pain, mainly back. I was referred to a rheumy and had some tests and MRI done and was diagnosed with RA. I was placed firstly on sulfasalazine and then switched to methotrexate and prednisolone. I was on these medications for nearly 3 years and really had no difference. My pain actually got worse but the rheumy wouldnt listen. She mainly harped on my weight (I am overweight but not massively!). I was so frustrated that no matter how much pain I was in my blood tests never showed it! But she kept treating me as if I had RA. At one point she actually discharged me and I was re-referred within a month or so. She still never listened to me. Nor did she ever examine me. My massage therapist (I get deep tissue massages every 2 weeks) kept insisting that I had fibro. I mentioned this more than once to the rheumy but she wouldnt listen. She upped my medication and that was it. I would wait for my appointment patiently, sit and wait in the waiting room for sometimes 2-3 hours as she ran behind, to see her for maybe 5-10 minutes!
Anyway, this rheumy retired (no notice given, I just showed up to my appointment one time and was told that she was gone and ended up seeing locums for 2-3 times). the locums generally didnt really take much notice of anything! One of them injected my back with steriod but it didnt really help much. Then finally got a new permanent rheumy who listened to me! She was fantastic. At my first appointment with her she asked how I felt and I told her. She then said that she had reviewed my file and didnt think that I had RA at all. She sat with me for quite a while, ie. probably about 20 mins to 30 mins and disucssed things with me. She took me off of the "dangerous" medication to see how I would do and what would happen. My pain increased but my bloods didnt change much. I saw her again a few days ago and gave her a list of symtpoms - most of which were fibro symptoms. She reitereated that she felt it was fibro with mainly a small element of osteoarthritis but certainly not RA or anything like that. I've now been discharged from her care back to my GP which upset me at first but she told me that fibro isnt something that she "treats". Rheumy diagnoses it but then its mainly a pain management issue. I'm being referred for pain managment course in my local hospital and also hopefully to the pain clinic there! Its now coming to grips with the pain and trying to manage it. Its been a frustrating road but its nice to finally be diagnosed! She also diagnosed bursitis in my hips. Injected them too!
I still work full time and "manage" but that is put mildly! I struggle through my work day then usually if we have some sort of plans in the evening or at the weekends I want to cancel as I'm so knackered! I hope that now I can start to understand my illness and do the best I can for myself to beat it (or at least not let it beat me!). Life was hard going gluten free because of the CD so this cant be that hard?! Sadly I can confirm that (for me) being gluten free hasnt made any difference to my pain, in fact my pain is worse now than it was before!
Anyway, if anyone has any helpful tips, books, websites, etc to help me I'd be most grateful! So sorry for the long schpeel but if you got this far, thank you for reading!
Best wishes and soft hugs.....