Finally! A diagnosis!!

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.....

xxxx

8 Replies

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  • hi im so pleased u finally got diagnosed u can start to look into ways to help yrself a little now .if ever i want to know anything i always google it ,usually i get my answers .FMis a horrible thing to have along with other things we tend to get.keep yr chin up hun and keep looking on this sight i think its a great sorce of information luv tofty xxx

  • so pleased that you finally got a good doctor ,they a few and far between lol

    fibro is rubbish ,but i have learned so much from this site ,and people are lovely here ,all ready to support you on a bad day ,and have a laugh with you when you have a fibro foggy day lol

    tc gentle hugs xxx

  • you must be so relieved. Its not nice to have anything, but i would rather have a diagnosis than not! at least then you have something to work with and perhaps now they will sort your meds properly. good luck to you . xxx :)

  • thanks all! yes, it is so nice to have a diagnosis! I must admit that when I was told of the misdiagnosis I felt a bit lost as I had resigned myself at that point to having RA and deteriorating, etc!

    I see my GP on monday so will discuss with her and get the referrals to the pain clinic/management group asap! Just need to juggle it between work and dealing with my daughter who has mental health issues. She is 21 and diagnosed with borderline personality disorder. Now that we know what we are dealing with it helps with her mood swings and shifts but still not easy. I'm learning how to cope with her. Its hard when I feel so rubbish to have to deal with her and help her! Hey ho, life could be worse!

  • Hi so glad someone listened and now you know what you have you start to deal with it, it is awful but i just get up every day and do whaat i can when i can there are no hard and fast rules you just do as much as you feel able to their are lots of books on the market in fact an earlier blog today recommended 2 from amazon but also the NHS website and if you go on the tags and archives on here you will find out alot, but basically we all have the symptons at different times and different degresss very odd ones at times too and its nice to cme on here and share things with others, you take care love to you didde x

  • And I thought I was the only one!! Exactly the same thing happened to me. Rheumy, methotrexate, folic acid, felt like death for five years. I eventually diagnosed myself, went to the GP's surgery, told her what I thought and she agreed that it was without doubt FM. I feel much better even though I feel pretty rough with FM - that's how ill I was.

    These are the people who are on mega-money and who can literally bury their mistakes.

  • Hi there nutzie one,

    Congratulations on your nice new doctor. :)

    I am so pleased for you that you are finally getting some help.

    I only had my gp for a couple of years she had dx fibro right from the start, but i knew there was something else. I got refferd to an immunologist who dx right there and then with fibro, cfs/me and hypermobility. It was such a relief.

    He has also looked into my bloods and he wrote me a letter saying of his findings, which some might be able to help.

    Sorry i am rambling on your post lol.

    Hope you get some help now. :)

    kel xxx

  • Thank you all so much! I'll have a look at the posts, etc you have recommended. its a shame that others are in the same boat. Scary really that one can be misdiagnosed so long and nothing happens to the doc! Its annoying as the doc who originally diagnosed RA is a very well thought of consultant. She's written books, and other things so I dont think anyone wanted to go against what she thought. Its annoying though that I mentioned to her about FM and she just ignored me. I almost got the feeling that she didnt like being "told" things if you know what I mean. It was so nice actually being examined. Well it did hurt, lol, but it was good having my joints and pressure points touched so she knew that was what I had. the hips are painful due to the bursitis so looking online to see what I can do while waiting for the physio referral. I'm a bit concerned about work and the pain management course but I'll just have to see when it runs and try to work around it with work. My boss is relatively understanding and now he is actually the Managing Partner of the firm so maybe it will have more clout that he agrees. Gonna have to chat to him though and make him aware of my problems (now that we actually know what is going on). I feel like such a fraud now having gone along thinking I had arthritis (well I do have osteo but not RA or AS). I'm embarassed that I told people that was what I had but now have to say I ahve something different. Does that make sense? I know its not my fault but still...........

    Thank you all so much! You have made me feel a bit better and not so alone!

    Hugs!

    xxx

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