First Rheumatology Appt - What to expect? (feeling quite anxious 🫤)

[Blue_Clay]

Hello everyone 🙂

I finally have my first appointment with a rheumatologist this coming Friday (sadly having waited 30 weeks for a consultation 🫤)

I am so hopeful of finding some answers as to why I have widespread pain all over my body, feeling very stiff/tense in the mornings, extreme fatigue (sleeping for 20+ hours at a time and then occasionally insomnia that can last days), sensitive/sore skin to the slightest touch, a fuzzy head and memory problems (eg often forgetting words or not being able to get my words out), difficulty walking any distance due to lower back pain.

The list goes on, and I’ve progressively been getting worse over the last few years.

I’m only 38 and am desperate to get some kind of life back?! As I currently don’t have one and don’t leave the house for weeks on end due to the above mentioned, plus crippling anxiety.

I’m so embarrassed of the shell of a person I’ve become 🙁

Apologies for the ramble 🫣

I was just hoping for some advice of what to expect at my appointment?

And is there anything I need to do or take with me?

Kind regards, and thank you in advance for any foresight/information you can offer 🙂

[Yassytina FMA UK Volunteer]

Hello, I’m hoping members that have been too a rheumatologist before will come on the forum and give you some helpful advice, it may help too write everything down , how long ie this has been going on , all symptoms and things have got worse at the moment for you. Please don’t be embarrassed ,professionals will have seen many patients and hopefully help you with ways to go forward. All of the above including anxiety can come with fibro , have you spoken to your doctor about anxiety ?or been offered any medication too help. Home can be our comfort place as we can get too spend a lot time at home, especially when flares kick off and we cannot do much , after the long wait you might well possibly be relieved too see the rheumatologist and talk. The forum here is good too have a chat and read other posts, i am hoping it all goes well Friday ,let us know how you get along xx

[Blue_Clay in reply to Yassytina]

Oh thank you so much for your reply 🙏🏼

Yes my doctor is fully aware of my anxiety & depression. I was diagnosed over twenty years ago, and although my depression is much more manageable and under control these days, I feel my anxiety is at an all time high 🫤 I’m on quite a high dose of Sertraline now (150mg daily), having worked my way through the ever expanding list of other antidepressant/anxiety medication and their side effects over the years. Therapy/CBT etc just wasn’t for me unfortunately, so with my mental and physical health in pretty poor shape at the moment, I kinda feel stuck between a rock and a hard place 🤷🏼‍♀️

Thank you for your suggestions regarding my appt on Friday. I’ll be sure to come back with an update and🤞🏼some answers!

[Elizahl]

It is perfectly normal to feel nervous we are all that way and hopefully with every new consultant we see. I found the first appointment good they had a chat and physically examined me I had bloods done through gp before going so he could check markers and went from there. I was finally diagnosed which was great but meds I tried didn't help much it's trial and error to find the right path for you. I did find the injections I got great for winter but they were a once off apparently not for long term use. I was on metatroxate pain was better but kept catching bugs so I am taking a break to see how it goes and will go back on them if needed. I wish you all the best and hopefully you will find the right route for you x

[Blue_Clay in reply to Elizahl]

Thank you 🙂

[Ninapod]

Hi Blue_ClayI have seen the rheumatologist once. He was very kind and understanding. He gave me lots of information. I wrote down what had happened / list of symptons /questions I wanted to ask. He did not examine me but looked at blood tests results from doctor and neurology report and confirmed diagnosis. However, I have not seen him again - everything was then sent back to my GP - so don't be surprised if this happens to you.

[Blue_Clay in reply to Ninapod]

Thank you 🙂

[Loobielu]

Same experience as those above. One very brief appointment with Rheumatologist for diagnosis and back to the GP. The rheumatologist was very kind and sympathetic though. Please don't be worried, they are just doing their job. None of us asked for fibro or did anything to deserve it. This is happening to us not because of us. This is the next step in your journey for a better life, that you deserve. We are braver than we think. Go for it. Best of luck, gentle hugs x

[Blue_Clay in reply to Loobielu]

Thank you 🙂

[LadyJoro]

Don’t expect too much from this appointment.

I’m 38 too, I was diagnosed in 2017 with fibromyalgia and hypermobility by a rheumatologist then discharged with 2 leaflets and a letter to my doctor suggesting alternative medications to try after being in the room for less than 15 minutes.

The best advice I can give is use all of the aids you can get your hands on.

Sit to cook and shower - this saves energy for later.

Buy pre prepped food where possible. Invest in a dishwasher.

Use the lift instead of the stairs etc

[Josie-Anne in reply to LadyJoro]

Hi LadyJoro,

Hope you are well, I was reading what you have written but I was told that pre prep food was bad for you as it causes a lot of inflammation in your body due to all the preservatives that they put in them and that basic foods meat, veg, potatoes or which ever diet your on are better for you, the more ingredients there are in the food it starts to cause inflammation or have I been misled, would love to know ☺️

[Blue_Clay in reply to LadyJoro]

Thank you 🙂

[Blue_Clay]

Thank you 🙂

[Blue_Clay]

***Update***

Well I attended my first appointment today.

The Rheumatologist at my consultation was extremely thorough, and very understanding.

I have been diagnosed with Fibromyalgia and referred to occupational health and physiotherapy. It was also suggested I start taking amitriptyline alongside my existing medication (gabapentin, painkillers etc).

I’ve also had bloods taken to screen for numerous things, as well as to rule out Lupus which has just been diagnosed in my immediate family.

I left with a wealth of information and suggestions that I am more than willing to try.

I’m just most grateful at being heard and being able to put a name to how I’ve been feeling.