Newbie waiting for rheumatology appointment.

[Aeam487]

Hi everyone,

I’m new here and just looking for some advise. I initially went to my GP with extreme tiredness and stiff joints in my hands. They did some bloods which I have attached below. The doctor called me in but said he didn’t really know what the results mean and has referred me to a rheumatologist. Since then I have been getting worsening pain in my fingers, wrists, toes, ankles and knees so extremely tired no matter how much rest or sleep I get. I do have a family history of lupus (my Aunt and Sister). Just wondering what you guys thought as I’ve been waiting since November for my Rheumatology appointment and still waiting? Thank you. X

[Hidden]

Oh my Aeam, so sorry to hear. This is one group where, though we welcome you with open arms, we really don’t like new members. We’d rather our numbers did not grow (if you know what I mean).

So it sounds like you must be familiar to Lupus? Then as you know, it could be, but it might not be. Lupus is called The Great Imitator, and I think that’s why it takes so long to diagnose. They want to rule out all the other things it might be. But, with a family history, that makes it more likely. In any case, you are feeling awful regardless and need to find out what it is do you can start to feel better. I am so sorry your wait is so long. Please keep us posted🙏 BK

[Aeam487 in reply to Hidden]

Thank you for your reply just helps to chat to other people whilst I wait. I have decided to go private as I have waiting quite a while now and would like to get on with finding out what is wrong with me. Will keep you posted. X

[Hidden in reply to Aeam487]

All my best!

[Chanpreet_Walia LUPUS UK]

Hi Aeam487,

Welcome to the LUPUS UK HealthUnlocked community, we offer a free information pack which you may like to download or request at lupusuk.org.uk/request-info...

I'm sorry to hear you've been experiencing severe joint aches and pains. Around 90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which contains helpful tips and information which you may find useful lupusuk.org.uk/pain-managem...

Have you been added to the rheumatologist's cancellation list? This may increase your chances of being seen by a rheumatologist earlier than scheduled.

LUPUS UK, nor community members, are medically trained, therefore no comments can be made about your blood test results. Perhaps your rheumatologist can discuss this over the telephone with you?

Please let us know how you get on, wishing you all the best.

[Aeam487 in reply to Chanpreet_Walia]

Thank you for your help. I did ask to go on a cancellation list but they said no you can’t be seen earlier. I’ve decided to go private so now have an appointment next week so will see what they say. Just hoping they have some answers and can help me.

[KayHimm]

I am sorry you are going through this. It sounds like you have an astute GP who did the right tests. They are sending you on to a rheumatologist who can clarify the diagnosis. The rheumatologist will take all of your symptoms, signs and labs into account.

Wishing you best of luck. Do want to stress that your GP is very capable of diagnosing serious issues like kidney disease or lung issues. He must feel confident that there is nothing organ-threatening. Important to remember that. And let GP know of any new symptoms that come up before your appointment.

K

[Aeam487 in reply to KayHimm]

Thank you, the original GP I saw was only locum and ordered these bloods. When I went in for results he wasn’t working there anymore and none of the GP’s knew what my results meant. They weren’t even going to refer me to a rheumatologist until I said I had family history of Lupus.