First rheumy appointment, she can't decide what's wrong, what do you think of how I have been treated?

I went for my first rheumy appointment on the 24th June. All my symptoms seem to me to suggest lupus.

I was asked lots of questions and had a through examination. She said that she thought it was fibro but wasn't as I didn't respond to any tender points. She then said it was probably auto-immune and sent me for blood tests and a chest x-ray.

I have now received a letter from her saying that all my results were clear other than some mild iron deficiency. She believes that I have got fibro after having said that it definitely isn't fibro?? I am not to have another appointment with her as she has said that she doesn't think there is anything else she can usefully contribute at this stage.

All that has happened since then is a phone call from my doctors surgery saying there is a prescription to pick up for iron tablets, no appointment to discuss anything!!

I have made an appointment for Monday as I feel I need to discuss what more can be done or whether I have fibro and just get on with it.

What would you suggest I do under these circumstances?

I don't want lupus but after having read a lot about it I feel that I probably have had it for some time but have been fobbed off for years.

Awaiting your useful import as usual.

What would we do without sites like this.

Many hugs


2 Replies

  • Sorry to hear that Sarah. Definitely go see your GP and if you don't get any support, change doctor.. Even if you do have Fibro, it needs treated too. It can be very similar to Lupus (some people have both conditions).

    My doc thinks I could have Fibro as well as possible lupus so is prescribing Lyrica while I wait for my appointment with rheumatology. Trouble is lots of docs don't know much about Fibro (or lupus) so it can be difficult to get support which is why you should change surgeries until you find one who does helps you. Good luck.

  • Just been to doctors and he was very understanding.

    He is treating the anemia but says it would be best to get that sorted and then take things further.

    He definitely says that I don't have fibro on what he knows about me.

    So must be patient.

    Hugs Sarah

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