Is it only a flare or more?

[theutopian]

I had bilateral pulmonary embolism after which only I was diagnosed of Lupus (SLE). Being Nepal, Lupus is still a very new illness and not many doctors are acquainted to the term yet. I was fortunate to have found a really good doctor and I am under his observation.

However, I can't seem to be able to get all the information I would like to get.

I have been experiencing a lot of joint plain, forgetfulness, dizziness, blurry eyes, lower abdomen pain and rashes. The right side of my body feels funny in different places. My head on the right seems to buzz and I can feel a tingling/ painful sensation that runs through my head to the neck to the ears to the shoulders. I get chest pains on both the sides with immense pain and difficult to kneel down or turn when sleeping. My right legs/ feet keeps getting cramped with pain on touch on my heels and calves.

I have mild fever, night sweats and fatigue that I feel like passing out.

I was told the tests I wanted to do were not in Nepal at all but finally found a centre which does the tests and they are extremely expensive.

Could it just be a flare or anyone thinks it is heading towards another attack of some sort?

I don't want to over think but want to take precautions.

Thanks a lot.

[Chanpreet_Walia LUPUS UK]

Hi theutopian,

Welcome to the LUPUS UK HealthUnlocked community. I am glad to hear you are under the care of a doctor. We offer free information factsheets on lupus, the symptoms, diagnosis and related topics. You may find it helpful to read them at lupusuk.org.uk/publications/ - your doctor may find these factsheets helpful and informative too.

Muscle/joint aches and pains, flu-like symptoms like night sweats, extreme fatigue and skin rashes are all symptoms commonly associated with lupus. Confusion, difficulty in articulating thoughts and forgetfulness are common symptoms that are associated with lupus; it is referred to as ‘brain fog’ or ‘lupus fog’ by people with lupus. Stress, anxiety and fatigue are a few examples of the causes of brain fog, you can find out more about this in our blog article ‘Coping with Brain Fog’: lupusuk.org.uk/coping-with-...

Below, I have included some links which you may find helpful:

Managing fatigue: lupusuk.org.uk/managing-fat...

Skin: lupusuk.org.uk/wp-content/u...

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

I would suggest asking your doctor to refer you to a specialist such as a pulmonary specialist or physiotherapist for the pain you are experiencing.

You may like to read our factsheet on lupus, the heart and lungs at lupusuk.org.uk/wp-content/u...

When a person is experiencing a 'flare' it means that their symptoms are exaggerated due to higher disease activity in the body.

It is important to remember that lupus presents differently in everybody, therefore, no two people will share the exact same experience. People with lupus can experience periods of remission where their sign and symptoms are reduced due to lower disease activity within the body. Periods of remission vary from person to person.

Please keep us updated, wishing you all the best.