What to do now?

Hi, I had my first rheumatology appt last week and now don't know what to do...

The consultant said I had all the symptoms of fibromyalgia, then he said that eventhough I have in addition to these continuous chest pain(since October), recurrent UTI 6 weeks of it (Dec-Jan) and now it's just started all over again!, mouth ulcers, itchy lumpy scalp, swollen lymph nodes and rashes he said he wasn't thinking SLE!

I was too tired to argue...perhaps when my blood work finally comes back it may change his mind. But he said he wasn't going to prescribe me anything, and previously my GP didn't prescribe anything as he though Rheumy would prescribe immunosuppressants. So what to do now? I have been off work since December and see no way of getting back there until some Meds might help control my symptoms. The consultant has asked for a nuclear full body scan but I don't really understand what this is for?

Any advice...can my GP prescribe me something even if it's not immunosuppressants, I definetly need some help or I can see no end to this? Sick of taking antibiotics and only taking vitD I feel like I am just in a continuous loop....🤒

11 Replies

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  • Maybe an over-the-counter anti-inflammatory supplement or real food might help? I'm thinking of turmeric or ginger. Cranberry juice is supposed to be good for urinary tract health, but I think it's more preventive. Garlic is a pretty strong antimicrobial food, but eating it raw might worsen the mouth ulcers. Are you checking your temperature for fever?

  • If your consultant has asked for a full body scan then he's being very thorough. Don't be disheartened. I've never been offered one of these in nearly 30 years of sero neg auto immune disease. The danger of taking medication whilst being investigated prior to diagnosis is that your 'true' results could be skewed/improved falsely which would not be to your advantage.

    There are a lot of conditions that can present in a similar fashion to SLE- to get it wrong would be remiss of your consultant. I know it seems endless but getting answers can be quite drawn out. I'm sorry I'm not more help but the scan will hopefully yield useful information.

    Take care, Clare x

  • Hi bexxy , they are maybe doing the scan to check your lymph nodes. I was diagnosed with Sjögren's over a year ago , my lymph nodes were all severely enlarged and i felt very ill . I had full body scans and biopsys- your doctor is being thorough. I hope you get a diagnosis soon and can start on treatment , best wishes 🌷🌷

  • Sounds like you may need a course of steroids to help you feel better for a while. My rheumatologist started me on mine.

    Lots of info on here from lots of people. All having problems getting a doc to help as they look at us as hypochondriac which we are not.

    The thing is to take control yourself with copies of your blood test results your gp or consultant can print for you. Ask questions questions questions. The doctors do try to fob you off alot. Your symptoms are happening to you not them so you need answers and treatment.

    It has taken me 3 years to finally get a rheumatologist and Ent consultant and a neurologist and my gp all on board to get a firm diagnosis and surgery for the second time in 2 years. After 15 years on thyroxine and swelling up mouth tongue throat hands feet, sore ulcers in mouth, no taste buds. A & E has been my friend that I visit often haha.

    It does feel like a continuous loop with the docs and consultants but I hope you will get there.

    I actually said to one of mine that I just cannot continue like this. It was then that all the referrals started. That and I had a thyroid storm in the end. They had to act.

    All the best to you. But you have to take control as they won't. (Bloods results will show alot) Even though you probably don't feel like it. It's the only way. Xx

  • It's all been said, but just to add, when I began my journey with my first rheumatologist in 2012 he had this habit of not telling me things. For example there's nothing wrong with you..... but in the letter to my gp it had "?sero neg ra" as the diagnosis!

    I always described him as the type of man that felt we are all just "little women" who need protecting from ourselves! But he DID send me for a nuclear bone scan... so maybe your rheumy is a bit like him?

    He was wrong BTW and the second opinion discovered a positive ana and referred me to to my third rheumy at the lupus clinic where I am now!

  • Thank you to everyone for your replies, I have an appt scheduled with my GP I have to wait a while as he is on leave at moment, but I prefer to wait than start process with another GP at the surgery...

    The GP said he believes it's connective tissue disease and is definetly thinking along the same lines as myself...I will discuss the feedback from Rheumy with him..and see what happens with regard to body scan, I understand there are still ANA blood results to come back from Leeds, it's been 4 weeks of waiting now for these but perhaps they may verify something in the end!

    Really I'm not a very patient Patient....I like to be on top of things but really I just seem to be getting nowhere and it really affects me emotionally😥

  • Just seen your postsoootired. This sounds like the exact same start to my journey. Please can you tell me was your first consultant in the NWest? Just curious. LottieD x

  • No he was in London but I think sometimes it's true about Dr's having a "God complex"!

    Hang in there, be strong and push for answers. You'll get there eventually.

  • Hi I totally agree with Claire. The Consultant looks like he is checking for other things first whilst waiting for the ANA result just incase it is negative. This is time saving! The scan will look at your whole body for anything untoward. If the ANA comes back positive you have your answer and the Consultant can prescribe, however, if he starts the process now, he may have to start another regime if the scan and or blood results show a different picture. Please be careful self medicating as this may change results, ie vitamins. Stick to painkillers, Good luck and keep us posted.

  • These things certainly are complex. I always want to know WHY? but no one has been able to give an answer, so how do they know how to treat? Good luck! And lots of hugs.

  • Hi Bexxy,

    I’m sorry to hear that you are not satisfied with the diagnosis and treatment plan that your consultant has currently set out. Have you thought of having a second opinion?

    Some of the symptoms associated with fibromyalgia overlap with symptoms of lupus such as tiredness, stiffness of the joints and increased sensitivity to bright lights. Mouth ulcers and rashes are recognised symptoms of lupus, we published a factsheet on ‘LUPUS: The Symptoms and Diagnosis’ which you can read here: lupusuk.org.uk/wp-content/u...

    A nuclear medicine scan allows healthcare professionals to see the activity and functioning of the tissue and organs. King’s College Hospital’s website provides information on how the scan is performed and how to prepare for it: kch.nhs.uk/service/cancer/t...

    It is worth going back to your GP and discussing whether they are able to offer you any form of treatment to help you manage while you wait for your results.

    Wishing you the best of luck, let us know how you get on.

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