Hi my name is sev, when I get a lupus flare up it so painful and get so tired too, put’s me in me for a few weeks.is this the normal for all

[Arsenal54]

My name is sev and suffer from lupus

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked!

SLE can affect people differently. It can attack joints, muscles, ligaments. It can attack internal organs, such as kidney, heart, lungs, brain and bowel. It can attack the blood and skin. But, the one constant for everyone is pain and fatigue. Neither can be seen! It can also affect us emotionally ie psychologically. We can feel anxious and depressed. Sometimes this is the result of active inflammation during a "flare." But, these feeling are a "normal" human response to having a painful, chronic disease that attacks us at anytime! In fact, it would NOT be normal not to have these feelings at some time!

You need to make a lupus specialist and you need to have a good support system.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.

Finally, please go to: lupus-support.org/ and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[jetjetjet in reply to lupus-support1]

are you connected to GHIC.world -DR Hughes ??.

I am an APS triple positive -primary- Male. Now my ANA has been ok wouldn't that be the first thing to show SLE.

[lupus-support1 Administrator in reply to jetjetjet]

Not necessarily. There are multiple variants of SLE including sero-negative SLE. I was diagnosed by Dr Graham RV Hughes.

Some 20% of patients with SLE also have APS. However, the Lupus Anticoagulant test is NOT a test for SLE or lupus. It's a complicated clotting test. Many patients and doctors are confused by this test!

It's because there isn't a single blood test for SLE that makes diagnosis dependent on the clinical skills of a lupus spect. If a rheumatologist isn't looking for SLE, the diagnosis can be elusive. Hence women can wait 20 years or more for a diagnosis. During child bearing years, the ratio of women to men is 9:1. Outside those years, women, men and children are in equal measure.