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I have made the decision to only send Butterfly News out once a
month, rather than every two weeks. It's getting increasingly harder
to find time to fit everything in, so this will enable me to keep
the newsletter going.
I was recently contacted by the editor of the Lancet
(a medical journal), and asked to write an article on my experience
with SLE for the journal. I'm not sure if or when it's going to
be published, but I have included the full, unedited article in
this issue. I often get asked about my `Lupus story', so here it
is in full!
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JOANNE'S STORY
It was in January '96 that I started to experience
joint pains, first in my knees, then in my shoulders and wrists.
I was working for the Benefits Agency, and 20 at the time, too young,
I thought, to be experiencing joint pain.
My GP suspected a virus, but when things didn't improve,
referred me to a rheumatologist.
The rheumatologist took blood tests, which came back
negative, and put my pain down to `bendy joints'!
At the end of February, I was struggling to work,
and took sick leave. The pain was getting worse all the time, and
now also affecting my muscles. Walking caused me a great deal of
pain, so I was unable to go out shopping, or socialising, which
was very isolating.
The next time I saw him he revealed that one blood
test - the ANA test - had only just come back, and it was borderline
positive. "It looks like you've got lupus," he said, and with no
further explanation sent me to see the Rheumatology specialist nurse.
He also prescribed Plaquenil (Hydroxychloroquine), an anti-malarial
drug. It was quite a shock to hear this. I had heard of lupus, but
didn't know anything about it, or even if it was fatal. Yet it was
a relief to have a name put to these symptoms.
The nurse handed me leaflets about lupus & briefly
explained what it was, and how it was treated, although it was hard
to take it all in. Once I started reading the leaflets, everything
fell into place. The previous year I had been referred to an oral
surgeon for recurrent abscess mouth ulcers. I also had fatigue,
got a rash in the sun, and had frequent infections.
My 21st birthday came & went, but sadly the joint
pain didn't go away, or get any easier.
On my next visit to the rheumatologist I was told
that the blood test was now negative, and maybe I didn't have lupus
after all. To be given a diagnosis, and start to come to terms with
it, then have it taken away again is extremely hard to deal with.
I continued with the Plaquenil, but when I lost 16lbs
for no apparent reason, he decided to stop it. He said that there
was nothing else I could take, and the pain was probably due to
my `bendy joints'! The stress of the last few months caught up with
me, and the tears started. In a bid to calm me down, the rheumatologist
agreed to admit me for 2 weeks, for hydrotherapy & more tests. Whilst
in hospital, I was prescribed Dothiepin to help me sleep.
Because the Plaquenil had been stopped, the joint
pain had gotten worse, and daily hydrotherapy just left me with
very sore, stiff knees.
The results of the skin biopsy I had done whilst in
hospital turned out to be positive, so the diagnosis was Lupus again,
and the Plaquenil was restarted.
Sadly, at a subsequent visit, the diagnosis was yet
again taken away from me. I decided enough was enough, I could no
longer go on seeing this doctor, and having my diagnosis changed
at each appointment. Since my initial diagnosis, I had joined Lupus
UK, and read everything I could about lupus. The more I read, the
more I knew it was lupus that I had.
Throughout this time, I had been unable to return
to work, and eventually was called in for a medical, following which
I was medically retired, at the grand old age of 22!
I started to attend a local lupus support group, and
found comfort in knowing that I wasn't alone. It was hard to cope
with, both emotionally & physically, with the pain and fatigue,
and also without a firm diagnosis.
I transferred to a different hospital, but the rheumatologist
I saw there was also reluctant to give a diagnosis of lupus, as
my ANA test was still negative. I now know that the ANA results
don't necessarily correlate with disease activity.
At various times during the past two years, my C3
& C4 complement levels had been low, as had my white cell and platelet
counts, all of which indicate lupus. Yet, because my ANA and anti-dsDNA
had not been positive, I was deemed as not fitting the ACR criteria
for the diagnosis of lupus.
This new rheumatologist did, however, take notice
when I complained of muscle pain, and arranged for me to have a
muscle biopsy. The first one was a disaster, the registrar who performed
the procedure didn't inject enough local anaesthetic, and couldn't
get any muscle. I was unable to walk for a week due to the pain.
Thankfully, the consultant performed the second biopsy, with success,
and hardly any pain.
At my next appointment, I was told that the biopsy
didn't show anything up. The rheumatologist said I didn't have lupus,
I had fibromyalgia. He told me to put up with the pain, and to go
away and get on with my life. I left his office in tears, and vowed
never to return!
I contemplated carrying on without medical treatment,
but decided to have one last go at finding a rheumatologist who
would take me seriously. I had become involved with the regional
lupus group, and heard wonderful comments about a consultant who
specialised in lupus. At my first appointment I knew I'd made the
right decision. Here was a doctor who actually listened to what
I had to say. After examining me & taking my medical history, he
confirmed that I did indeed have SLE, and not fibromyalgia. After
reading the muscle biopsy results, he said that it had shown up
some abnormality in the muscles. I went away feeling such relief
that I had finally got somewhere after 3 years. My Plaquenil & Dothiepin
doses were increased, and he gave me a stronger painkiller - Tramadol.
I was offered Methotrexate or azathioprine, both of which I declined,
as they can affect fertility. Here was the first doctor who was
willing to let me try steroids. After the first week I felt like
a new woman! The joint and muscle pain improved, as did the mouth
ulcers and fatigue.
I am now taking 5mg of prednisolone each day, for
the foreseeable future. I also take calcium tablets to reduce the
risk of osteoporosis. I still get flare-ups of joint & muscle pain,
and also suffer fatigue regularly. But I know that I have a good
doctor who will deal with any problems that arise.
My only regret is that I didn't see this doctor from
the start. I feel as if I have lost 3 or 4 years of my life. At
an age when I should have been out there enjoying life, I was at
home, too tired and in too much pain to go out and have fun. However,
I am no trying to look the future and get back to normal.
I am on the committee of the regional Lupus UK group,
edit the newsletter, run a support group, and am a contact for the
charity. I also run a lupus website (www.uklupus.co.uk), where I
provide easy-to- understand information on lupus, and also support
for sufferers and those not yet diagnosed. I have also just started
to run my own business, as a textile artist, something that I have
wanted to do for years.
I like to think that everything happens for a reason,
including me having lupus. Maybe if this hadn't happened, I would
still be stuck in a job I didn't like rather than realising my dream
of running my own business.
I have come a long way in the last 5 years, yet it
saddens me to see so many people having problems getting diagnosed,
and going down the same path that I did.
I hope that more doctors will sit up and take notice
of lupus. Yes, it is hard to diagnose, yet it's even harder for
the patient who hasn't got a diagnosis.
******************************
NEW ON THE SITE THIS WEEK
Lupus news has been updated -
http://www.uklupus.co.uk/lupusnews.html
A new page has been added giving tips on getting
a good night's sleep - http://www.uklupus.co.uk/sleep.html
Please support the site & help to keep it going (I
have to pay to keep the site up and running) by clicking in the
ad banners on the site, and visiting our Store (http://www.uklupus.co.uk/lustore.html)
******************************
Butterfly News © 2001 Joanne Forshaw Must not be reprinted
in any way without prior permission from the author. Any queries
or suggestions - [email protected]
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