HELP

[Vivg31]

Hi everyone

Im currently going through the mill my doctor thinks i have lupus already have fybro.

My blood test came back as negative despite my malar rash on face and palm of hands.

Amongst other delightful surprises lol .

My father had Lupus also.

Im not sure if this is conected if anyone could help .

Constipation is awful .

My bladder out of control .

Now i feel like all my ribs are broken .chest pain through to my right side of back .

Am i going CRAZY

PLEASE HELP 😀

Hope your all coping though out there. Xx

[Spanielmadlady]

All I can suggest to you is you write everything down,take pics and ask your gp for a referral to rheumatology. Gps are not very good at dealing with AI illness.what blood test came back negative? As you need a full blood panel doing.journey to diagnosis takes years so youve got to stay strong believe in how you feel and keep going.maybe check out the 11 point criteria for lupus and see if that helps .hope you get some help soon

[tiredmum]

My blood tests come back negative too but I have still been diagnosed with seronegative SLE. It took 10 years to get a diagnosis. Like you I had malar rash, rash on my hands and wrists, swollen and painful joints, terrible chest pain especially when I breathed deeply, was so ill if I went in the sun, had episodes of where I couldn’t walk, had sores on my fingers and toes that took weeks to heal, nasal and oral ulcers....and debilitating tiredness .I took photos of everything and kept notes of all my symptoms. I finally saw a rheumatologist after being diagnosed with APS and he sent me to see Dr D’Cruz at St Thomas’ who confirmed I had SLE.

Don’t give up on a diagnosis, it may take time but you will get there.

Good luck.

[MichelleHarris]

My Rheum said all my tests came back negative and fobbed me off. GP wasnt happy and sent me to another Rheum as I have Hashimotos ( TPO’s over 600), Sjogrens type damage to parotids and Eosonophillic Oesophagitis, all auto immune x

[Chanpreet_Walia LUPUS UK]

Hi Vivg31,

Fibromyalgia can be commonly diagnosed during early stages of lupus. Which blood test did you have taken? An ANA test is not sufficient for diagnosing lupus. dsDNA antibodies are very specific to lupus, they are seen in approximately 60% of lupus patients. Learn more about the tests and criteria of making a diagnosis of lupus at lupusuk.org.uk/getting-diag....

Have you sought any medical attention regarding your chest pain? According to The Lupus Encyclopedia, chest pain can be caused by something as simple as indigestion, gastroesophageal reflux, or a muscle spasm. However, some causes of chest pain can deadly and need immediate attention. We published a factsheet on lupus, the heart and lungs which you mind helpful to read at lupusuk.org.uk/wp-content/u....

We published a booklet on lupus and the skin which you may like to read at lupusuk.org.uk/wp-content/u....

Best wishes,

Chanpreet

[CecilyParsley]

Hi Vivg31 I think the advice already given is sound . I just wanted to tell you that you are not going crazy. That is quite a common feeling in the early stages of any AI illness. Your body is at fault and it may take a while for your Doctors to assess you properly. As others have said keep a symptom diary, take images and a note of any thing that made symptoms worse or eased them ready for an appointment. Good luck xx