I would like to tell you about an illness I have. You may have heard of it before - it is called Systemic Lupus Erythematosus (Lupus) for short. Listed below are some of the symptoms that can be displayed by a person that may have Lupus, though some people who may have one symptom may not have Lupus.
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This is my story about Lupus.

I did not know I had lupus I was just feeling very ill and had sore joints. I could not tell the doctor how I was feeling - all I could tell him was that I felt ill so that was not telling him anything.

5. Photosensitivity: Unusual skin reaction from exposure to sunlight, by patient's history or physician's observation.

8. LE cells: two or more classical LE cells seen on occasion or one cell seen on two or more occasions.

So, all the doctor could say was "here are some pills. If you do not feel any better come back and see me."

Well, I did not feel any better. I Was much worse, my joints were painful and it was hard to do too much walking, so, off to the doctors again. You could hear him say to himself "not her again."

This time all I did was cry so he spent me to a specialist.

So off I went to the specialist, and what do you think he told me? That it was all in my mind. I could not turn in bed without my husband's help, so I knew it wasn't all in my mind. So, off to the doctor again! Yes, the same look on his face ' :so, try this specialist."

This specialist is a rheumatologist, and did a blood test, but let me say this, this new doctor knew what he was doing. I also had a small piece of my skin taken for a biopsy and he found out that I had Lupus - so you seem, it pays to get a good specialist.

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This all took place in 1982, and my specialist started me on Prednison. I also had Epilepsy which can come with Lupus.

In 1987 I had Pneumonia which developed a blocked blood vessel on my big toe. They were thinking of taking my toe off - now this is where you need a good specialist. He and his team got together and came up with putting a balloon in my arteries to open them up, which saved my toe.

In 1989 I was diagnosed with lupus affecting the brain.
In 1994 and 1997 I had Pneumonia.

It may not look like it,
but I'm in pain all the time!

During 1997 I had a knuckle replacement on my right hand index finger which was successful - again I must say this is where you need a good specialist. Why? You don't get a new knuckle put in by anyone when you have lupus, so my specialist got me the best surgeon. Since then I have no more pain in my knuckle and I can make a fist.

Prednisone is a steroid. It has side effects and can cause a weight gain. One of the symptoms is a moon face.

In 1997 I was playing with my grandson when I got a pain in my right thigh. The next morning when I got up my left thigh was the same, andmy legs gave away from the waist down and I found I could not walk.

I fell and broke my left ankle and was in bed for two weeks. Then I had to go for a muscle biopsy to try and find out what was going on with my legs, and had to go back to see my specialist the next week, and he found out from the biopsy that I was getting too much prednison which caused the muscles to go weak.
I was put into hospital because I was having pains in my chest but my heart was found to be alright. They found out that my lungs got smaller and I was not getting enough air. I was in hospital for six weeks - this was in 1998.

I am not doing so bad walking now. I have got a walking frame which we had to buy ourselves and

My husband had to retire from work before his time to look after me....

it has helped me a lot, but I have to use a wheelchair when I go shopping. I am being weaned off prednison and at present I am down to 12mg. My specialist is going to try and get me down to 10mg, so we just have to see if I can make it. As I said at the start do not think you will get the same as I have, it was just one of the things that can happen. I don't put any blame onto my specialist he did everything to keep me out of pain, and that is why I say to you all, "Get a good specialist."

Ask questions. It is your body and believe me you know when things are not right.

People look at you and say "how well you look". They cannot feel the pain

If you had a sore finger with a band aid on they would say "that must be sore' because they can see the band aid.

Although all of this has happened to me over the years, a friend of mine who has also been diagnosed with lupus and has the symptoms of Raynauds disease (where her hands turn blue) and also various joint pains, she is on a low dose of prednisone.

There are lots of other sufferers of lupus that I have met and their symptoms and treatment is all different.

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Lupus on the Internet