Rheumatology appointment set back 😭

[Gingernat20]

I had my long awaited rheumatology appointment this week, I have been waiting since Feb for it. I went in with a positive mind set, I had typed up my ongoing symptoms and how often then occur. Consultant introduced himself, and asked me a bit about myself & my symptoms.First off, he literally took the quickest if looks from his desk at my face rash, "that's not a lupus rash", but no inkling as to what else it could be. I then handed him my sheet, he didn't take it ,let alone read it .

By this time I was very flustered and out of sorts,so when asked about my symptoms I could only give a few ,as I was all stresses so got brain foggy.

He the matter of factly says it's fibromyalgia , Ill send a report to your GP and there are some links for you to get some self help.

No pressure point check, no trying to explain why certain things have happened this year ( like unexplained agony ,like labour, both front & back of my body, from chest to pelvis,that resulted in an ambulance ride to a&e, a 6 hours stay, multiple ECG's ,tests etc to be advised we don't know what it is, probably lupus related) not even things I can do/try to exercise to loose weight to help my pain.

Even writing this I'm in tears ,as I just am fed up of constant battles.

My mum who has fibromyalgia says she knows I don't have it,as I have alot more going on than she does.

I have opened a complaint with my PALS service,as the guy I saw was the clinical lead for this area 😭

I wish I could afford to go private but I cannot .

I am so thankful for this forum as everyone is so kind & helpful.

[Femme1]

Hi Gingernat20I'm in a similar position to you. Sorry to hear you had such a terrible experience, but this mirrors the one I had with a rheumatologist last Monday. Lorry load of symptoms which he downplayed, family history which he used as an excuse for my positive ANA and low dsDNA result, didn't believe I had the typical sun allergy issues as I had no picture ( invoked the allergy myself today as I felt I had to justify my condition,) Surprised that I had the allergy response with such low level UV in October. Was also told fibromyalgia and offered an antidepressant etc. My theory, I'm not at a critical level and the NHS is overrun, so they take those in need the most - which is not great as all the lit says to find the disease as early as possible. Got to keep fighting, visiting GP and trying to get one on side is my next hope ( following advice from here)

Good luck with it all, it's a hill and a half isn't it .

[Gingernat20 in reply to Femme1]

That is exactly how I feel. Too busy, not "Ill" enough do fob it off as something else. Which is great if I don't have lupus, but what if I do & then I do need help & it's more expensive/problematic then it first could have been?

I'm hoping PALS will help me get a second opinion and I'll go from there xx

I hope you get properly treated too

[Femme1 in reply to Gingernat20]

Good luck Gingernat20, keep us informed 🤞🤞

[CecilyParsley]

Hi Gingernat. I am so very sorry that this Consultant dismissed you so readily. I can fully empathise with your shocked and stressed reaction as I myself have had it more times than I care to remember l you did everything right, went prepared with your written list as brain fog and sleep deprivation make even the most troublesome symptoms evaporate when under pressure.

Can I ask what area of the UK you are in?

I live in Wales but although I was diagnosed quite promptly with Lupus my diagnosis has repeatedly changed over the years to Behcets, UCTD, MCTD, Fibromyalgia and even “hysteria”. It is soul destroying but it just proves that different Consultants are likely to provide different opinions. I would definitely ask for a second opinion and next tine take someone with you who can observe and advocate for you if necessary.

Good luck xx

[Gingernat20 in reply to CecilyParsley]

Hi, I am in Devon, so come under the Royal Devon & Exeter healthcare trust .

Thank you so much for your kind words, it has made me realise that asking for a second opinion is the way to go, and see how that goes.

Xx

[CecilyParsley in reply to Gingernat20]

You are very welcome. I think so many people have been in your situation but think that they are alone. One of the truly wonderful things about this forum is that you realise that there are others who you can talk to and who understand how you feel.

Please keep us updated and I wish you the very best of luck xx

[kt11]

Hi Gingernat20, I am really sorry about your treatment, your Rheumatologist sounds like a carbon copy of mine. He said I have fibromyalgia too. Good luck with your PALS case xx

[Gingernat20 in reply to kt11]

It is so difficult isn't it. Hopefully with the help of our PALS team I'll be able to get a second opinion and go from there.!

I hope you get sorted out too x