First Rheumatologist appointment : On Thursday I... - LUPUS UK

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First Rheumatologist appointment

Leeshalou123
Leeshalou123

On Thursday I went to my first rheumatologist appointment and I was so scared and nervous at one point they were 7doctors around my looking In my mouth at my ulcers looking at my joints my hands feet and knees they said my ana is positive so they a pretty certain I do have lupus they said I have rheumatoid arthritis and I have raynauds they did blood tests on me and gave me a steroid injection and i have to go back in 3month, what could I do till then, do I need to go on a lupus diet or has anyone with lupus gone on a gluten free diet? What do you think I should do x

28 Replies
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Good evening,

I felt I should respond and let you know you will receive some very helpful advice on here.

I don’t really have any suggestions for you but I can relate to the fact when you are suspected of having an illness and now have to wait 3 months for you next appointment , your kind of left in the lurch and most likely spending a lot of time googling away to try and get some advice.

There are plenty of helpful members on here and the moderators are good too. Weekends I find are generally quiet on here so if you find this is the case I can assure you, you will not go unnoticed.

This site has certainly giving me hope and reassurance and you can be so open about your thoughts, feelings and of course the dreaded symptoms

Xx

Thankyou so much means a lot xxx

Welcome Leeshalou123

It's a stressful and confusing business isn't it? If you are anything like most of us on the forum, you will probably find it will takes months before you have all your questions answered, and there will always be new ones coming along. One has to learn to live with a degree of uncertainty.

I would recommend that you read around the subject a bit - the LUK leaflets on the "home" page here are very good - and hang around this site to pick up any tips and share your own with everyone here.

As far as diets go, there are lots of diets floating about that different people claim are good for lupus, and quite a few people in this group like gluten-free or various more or less weird and wonderful supplements. Aside from generally eating healthily, though, there are none that have been proven to produce benefits in a rigorous research trial. So my advice would be to do whatever you feel is right for you. x

Okay Thankyou so much, at my appointment they was saying loads of different illnesses that I could have and will have but they were all talking at the same time so I couldn’t get it all in it was very complicated, I might try gluten free and see if that makes a difference and yes a couple of month ago lupus uk sent me leaflets and that through the post so I read them all before my first rheumatologist appointment xx

Gluten sugar alcohol worked for me.we are all different though?got to be worth some elimination ,just to see if it helpsxxxx

Do you mean having them helps or without them helped xxxx

My herbalist has definitely helped me (diet and advice too)drugs have never really helped.i do take them when I have to.i am not silly about it .

Thank you xxx

Hi. You poor thing talk about information overload. With that many doctors all chipping in it will be confusing. I really think you need to take a deep breath and then write down the key points you can remember then leave it for a while before going over the list one by one. Please don't rush into any diet before talking to a doctor.

The best thing you could probably do if the hospital doctors bombarded you with diagnosis and information is to go to your GP to get them to go through things with them. Your GP should be able to access your hospital notes and should also have a report to them from the hospital. Hopefully you will have a good GP, bare in mind you may need a double appointment as 7 doctors may all write up but hopefully one has taken the lead and will be in control.

Good luck, in time things will slot into place, make more sense and the frantic newness will ease.

X

Okay thank you so much xxx

Hi. Nice 2 meet u!! I am gluten and dairy free. If u can afford it...usually about £40-€50 for a first consultation I would suggest you go c a nutritionist for advise on any elimination diet as they can b tailoted 4 u individually. Alternatively ask your gp to refer u to a dietician under the NHS or the rheumatology service u r under may have a specialist nurse with the team who could advice u on diet. At least it gives you a sense u have some control over your body and I found it actually made me eat much healthier food and try things I never would have b4. U should also get a follow up letter from your appointment which should summarise things and hopefully make it clearer what was said. This will also go to your gp so u could meet with him/her to go thru it. Hope u feel better soon xx

Okay Thankyou so much xxx

Hi sory to hear you have lupus don't go changeing to much to soon a balanced diet is best avoid faddy diets carry on getting plenty exersize to what you are able to do if you get tired rest and go again if you get fatigued don't try and push through it rest and take it easy

..

Thankyou xx

Hello and welcome Leeshalou

Seven doctors?? R u a celebrity?? Gosh these spots can be confusing enough when speaking to one doctor..but SEVEN..no wonder your confused!! I would say definitely have a chat with your GP who should be able to fill in some blanks, give u some idea of what's going on.

I am on oral steroids..I've never had an injection of steroids but they can have some side effects that can be quite tricky..the main one with me is feeling angry, irritable and tearful all at the same time so if this is your first experience with steroids watch out for and discuss any side effects with your GP. Having said that steroids are very useful in managing symptoms of lupus.

Rheumatologists are the detectives in the world of medicine and they will be able to give u the right treatment for your symptoms but they have to do thorough investigation first..an appt again in three months is pretty good..they are taking good care of u.

Many of us keep diaries so that we can record any troubling symptoms..lupus is a tricky condition..then we can show docs at our appointments even if the symptoms is no longer present.. if u have any skin involvement take photos as well because they can have a good look..(it saves me having to get undressed!)

I do feel for u..u were already nervous about the appt and are probably still a bit shell shocked from it all. The steroids should help and when u have your next appt the rheumy will have results back from the initial testing. Well done...u are a lupus warrior!! U have had your first appt..things will get better..u will be expert yourself soon enough!! Xx

Boudica1
Boudica1
in reply to Krazykat26

Hi, 7 does seem rather a lot for a first appointment, sounds like the consultant had some junior doctors s/he may have been training. Personally I think it was a bit much for a newbie to have as there is enough to take in from one doctor about treatments and any further testing. To be also there when they are discussing what may or may not possible health problems in the future must be very alarming for someone so new to the condition.

Hopefully next time won't be such a babble and she can take things easy and ask the questions she wants.

X

Krazykat26
Krazykat26
in reply to Boudica1

Yes I had an all over major body rash n I ended up in casualty..tbh I looked like a freak!! I was constantly visited by medics n nurses..anyone who was interested came to have a look!! The consultant thought that I had Stephen Johnson's syndrome..rare reaction to antibiotics!! Many medics saw my anatomy that day...eeewwww!!!

I love your name..I'm a bit of a pagan myself n I've got grandchildren with fiery red hair!! And in times of pain n struggle I do repeat mantras to myself..Boudicca warrior woman frequently mentioned xx

Boudica1
Boudica1
in reply to Krazykat26

I come from a family of 50 shades of redheads, dad's clan from the middle of Suffolk and into the Thetford area. The newest granddaughter looks like she is going to have a tint of red. lol 😂😎

I have SS and Vasculitis and Jessners lymphocytic infiltration so get all sorts of rashes. Keeping fingers crossed I don't end up with Psoriasis and/or arthritis as that runs in the family.

Know what you mean by being of interest to doctors, guess they don't have many chances to see people like us but it can be overpowering at times.

I must admit when I'm feeling unwell I just want to be left alone and don't want to be bombarded with questions and looked at as if I'm a rarity and certainly don't poke or prod anything that hurts. Guess I'm a nightmare patient all I want is pain killers and left alone somewhere dark and quiet to sleep.

X

Krazykat26
Krazykat26
in reply to Boudica1

😹😹me too..when nurses try n touch me I'm not happy n when anyone tried to touch my feet I have to hold my legs down so I don't kick out..only because it would hurt me more than them!!

There are so many shades of red..I can see it in all four grandsons..n two of them are blond..I call the two redheads 'the celts'...they are both fiery spirits xx

Thankyou so much and yes 7 doctors I’ve got bad anxiety anyway and I didn’t know where to look were all looking at my butterfly rash as it was flared up in the hospital so they were touching it and everything I showed them loads of pictures aswell and I took my diary where I wrote all my symptoms and when they started and everything, Thankyou so much for all your support, none of the doctors were training they were all proper doctors xx they all just kept coming in and going out and all looking at my rash and in my mouth at my ulcers and at all my joints xx

Awww bless ya..did anyone ask u for an autograph?? Any paparazzi there?

U relax now it's over so take it easy n rest..after all that you'll get information about what's going on..well done to u..do whatever u find rewarding..u had a very wierd unusual experience.. you're bond to feel a bit shaky.

Gentle cyber hug cominatcha 🤗🤗🤗 xxx

Thank you so much, I’m going to get an appointment with my doctor who referred me and speak to her so she can explain it all to me xx

Yessssss!! Welcome to the tribe...warrior princess!!! Xx

It's the pits being different and not seen very often. I'm just glad I've avoided being seen when the abdomen is playing up, the thought of someone poking and prodding the abdomen whilst I'm in pain...... doesn't bare thinking about.

I do have a great maxillofacial surgeon, he's a really gentle caring man. Rheumy seems okay so far although I have seen some in the past that leave a lot to be desired. Had a right battle to finally get a decent dermatologist though, it got that bad I refused to go to appointments and finally got a referral from Rheumy to see the top specialist at the hospital who also works with BUPA. Until then the other fool's kept insisting it was an allergy and had me on double the manufacturer's dose of antihistamines which didn't work for the 2 years I was on them and they kept ignoring anything I said.

Anyway that's enough about me.

Take care and remember one thing at a time, there is always someone here so you are not alone.

X

Thankyou so much xxx

Get the diary going. Excercise if possible. Talk to your GP and pharmacist.

The main thing is to receive treatment for autoimmune conditions the badge for the particular type of condition can come late. The steroids will definitely help to calm things down. Keep talking to your friends here. Best wishes Kevin

Thankyou so much means a lot xxx

Heya everyone, got another letter through the post I have an appointment to see my rheumatologist on the 11th March, they also want to do a biopsy on my face, can anyone tell me what that is, and will it hurt xx

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