A little worried.

[Aeam487]

Hi everyone,

I saw my rheumatologist last week and she said she is sure I have some sort of connective tissue disease possibly lupus. Didn’t want to diagnose until me bloods come back so will see her again in 5 weeks.

I have been getting a lot of aching in my muscles and they just feel really weak. Doesn’t seem to be improving. Just wondered if any of you suffer from this as I don’t want to be missing something else? I do have more classic symptoms of lupus such as extreme fatigue, joint pains and mild butterfly rash. Just really worried.

Thank you. X

[Hidden]

I really understand your worry but it sounds as if you’re in good hands. I have Sjögren’s plus overlap connective tissue disease rather than Lupus but they cross over a lot. I’m sure your rheumatologist will have taken a full battery of bloods and yes, Lupus and other rheumatic diseases can all cause severe muscle pain. The main thing is to get diagnosed and then get onto treatment which will hopefully make you feel much better. 😊

[Aeam487 in reply to Hidden]

Thank you for your reply. Just hate not knowing what’s wrong with me and feeling like I’m just getting worse. My rheumatologist certainly took a lot of blood for testing and a chest x Ray so hopefully I’ll have some answers when I next go in. X

[Hidden in reply to Aeam487]

I really do get it. I have Sjögren’s, was previously misdiagnosed with RA, but my new rheumatologist took a lot of bloods off me and they point mostly to systemic sclerosis - which I do have some symptoms of so I’m quite anxious too. Hopefully you will be contacted by the consultant with test results but otherwise you may want to see your GP to get your test results back.

Most GPs don’t know much about Lupus or Sjögren’s, let alone Scleroderma. But they can at least look at your test results and tell you the results and some basic information about what they might mean.

[Aeam487 in reply to Hidden]

Thank you. I went to the GP for my original results and was just told they were abnormal but they didn’t know anymore than that as they don’t know how to interpret them. Have a feeling I will have to wait to see the rheumatologist again but may see if the GP can at least give me the numbers. X

[Hidden in reply to Aeam487]

When my autoimmune bloods first showed up as abnormal I actually asked a Locum GP to show me them and to tell me more.

She looked, showed me them on the computer screen and explained what the possible significance of the nucleolar pattern of my ANA might be. They do usually understand how hard it is for patients to wait - so definitely worth asking for print out so you can look up on lab-tests online while waiting to see what your rheumatologist’s diagnosis will be. I’m definitely one of those who prefers to know - otherwise my imagination goes into overdrive!

[Hhood]

Hi I sympathise with you. I have probable lupus and for the past 4 years suffered with joint pain which is like a roller coaster one day not too bad then the next awful, I take hydroxychloroquine for it. Are you on any meds?

I also suffer with terrible fatigue and when having a bad time with my joints the muscles in my upper arms flare and are very painful.

[Chanpreet_Walia LUPUS UK]

Hi Aeam487,

Sometimes certain situations can be tough which is why talking to someone can help reduce any worries or anxiety you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can request details of your local Contact at lupusuk.org.uk/contacts/

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 can read at lupusuk.org.uk/pain-managem...

There are specific tests and criteria that need to be met in order to make a diagnosis of lupus, learn about this at lupusuk.org.uk/getting-diag...

We published a range of factsheets and booklets about lupus and topics such as the skin, brain, feet and heart which you may like to read at lupusuk.org.uk/publications/

Please keep us updated, wishing you all the best.