Possible lupus diagnosis

[Jacbar]

I’ve been having a variety of symptoms for years now but things started getting worse about a year ago.

From head to toe my symptoms can vary from any combination of the following.

Headaches, intermittent low grade fevers, flu like symptoms where I struggle to get out of bed ( can happen for a couple of days then fine for a few days then happens again) recurrent mouth ulcers, constant neck and shoulder pain, back rib pain that can hurt on breathing at times,

Nausea, vomiting, lower back pain, hip and knee pain, diarrhoea, lower abdomen pain, frequent urination, pain in back kidney area, intermittent rashes on face, arms, torso and thighs.

I already have one autoimmune condition, Hashimoto a and had my thyroid removed 5 years ago. I suffer from fatigue because of this but it’s much worse lately. I also suffer from severe restless leg syndrome and currently being investigated for endometriosis.

I was in hospital over the summer for 6 days because of abdominal pain and fever. They couldn’t find any reason for fever but gave me antibiotics anyway.

My rash doesn’t look like the typical lupus rash. It appears out of no where and is very hot to touch, raised and stings, it isn’t itchy. It can last 1-5 hours then disappears.

My sleep consultant has asked for an urgent referral to infectious diseases as I was living abroad up till 4 weeks ago and had my appendix removed while abroad. She also suggested lupus.

Does any of this sound like it could be lupus?

I’ve attached a picture of my recent rash in my thighs.

Thank you

[Michiganpbc]

Hi there so sorry you are suffering, I have had similar symptoms on and off for years I have Sjogrens overlap with Lupus and PBC so I understand all these symptoms I hope they can help you soon, hand in there 🤗

[ceceliac10]

Hi there it sounds like Lupus, as I had similar symptoms. Temperature at nights, painful body unable to walk, rash etc. I hope it gose well for you and you feel a lot better soon. It can be very frustrating. But hang in there

[Jacbar]

I’m not sure whether to go to my gp and push for more testing or wait for this referal from the hospital to come in?

I looked up lupus uk guidelines from a link on another post here and was looking at the blood test bits. I had a look at my blood tests from when I got ill abroad and one of them I think might be an indicator. What do people think?

My erythrocytes sedimentation is slightly high with in the low to normal range for CRP.

[ceceliac10 in reply to Jacbar]

Hi There ask your GP to refer you to a Rheumatologist. They will run relevant test.

[Jacbar]

I honestly think she will have a fit in the air if I ask for another referral

I will give it another week to see if I get anything through from my other consultant if not I will go see my gp again.

[Chanpreet_Walia LUPUS UK]

Hi Jacbar,

Welcome to the LUPUS UK HealthUnlocked Community!

Headaches, extreme fatigue and oral/nasal ulcers are all common symptoms associated with lupus. to find out what other symptoms are associated with lupus, you can download or request our free information pack here: lupusuk.org.uk/request-info...

There are specific tests and criteria that are required in order to make a diagnosis of lupus. To find out how lupus is diagnosed, you may wish to read our latest blog article ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

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: lupusuk.org.uk/pain-managem...

Fatigue is one of the most common symptoms of lupus, it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here: lupusuk.org.uk/managing-fat...

If in doubt, it is always worth speaking to your doctor about the symptoms you are experiencing as he/she can provide you with the correct advice and treatment. Also, the doctor may refer you to a specialist such as physiotherapist or pulmonary specialist, if required (breathing difficulties).

Oral (mouth) and nasal (nose) ulcers are one of the most common features of lupus occurring in around 45% of people who have SLE. We published a blog article on coping with oral and nasal ulcers which you can read here: lupusuk.org.uk/coping-with-...

To read our factsheet on ‘LUPUS: and the Kidneys’ click here: lupusuk.org.uk/wp-content/u...

Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem. You may like to have a read of our guide on lupus and the skin which here: lupusuk.org.uk/wp-content/u...

It is important to bear in mind that lupus presents differently in everybody therefore, no two people will share the same exact experience.

Please keep us updated, wishing you all the best.