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I've responded to a couple of the threads further down and just realised that I should probably introduce myself first :rotfl:

I started having problems in June 2006 when, after one afternoon at the beach in not so sunny Scotland, I woke up the next day looking as though I had the plague. I've never seen anything like it before and although it still flares up under the lights at work and out in the sun, its never thankfully as bad as it was that first time.

So that was all until June 2007 when I started having trouble staying awake during the day. I've fallen asleep in bus shelters and even standing on the pavement waiting to cross the road. That's all it took for me to be sent for a sleep study last July.

After that my joints started to niggle slightly, always my left leg until one night I ended up at A&E because I couldn't left my leg off the floor without being crippled with pain. They thought a cyst on my ovary at first then said it was probably IBS. I've always had IBS and it never felt like that!

That leg got better and then my right hip started to hurt, the next day it might be my knee or my ankle. Walking any distance made it worse and now I hurt after resting too. When trying to walk after any time sitting down I'm like Bambi on Ice.. its not pretty :lol:

Dermotologist says I have sun sensitivity, I often have to use a walking stick to ease the pain and had to take anti-inflamitories to ease the pain. I was put on Amatriptalin for my daily headaches but have been taken off that last week because its playing havoc with my IBS.

Anway, I finally got to see a Rheumy and after two visits she gave the diagnosis of 'probable SLE'. She says that I don't fit a typical lupus case as my ANA is negative and I don't get swelling in my sore joints. Also because I have no hair loss or organ involvement yet. I've now been taking Plaqunil (sp?) for about 6 weeks and in the last two haven't had to use my stick much at all. I really hope that's a good sign that this med might work for me!

Anyway, that's my story! A bit long winded sorry so if you're still reading, hats off to you and thanks! I look forward to getting to know you all. :p

Claire
x

PS. Got the results from the sleep study in Feb 08 and I have Sleep Apnoea. Will get my CPAP machine home after a night in hospital at the end of the month so hopefully I'll stop looking like a down and out in the bus shelter! ~l~
 

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Hello Claire and welcome,

I'm glad to hear that you have started on plaquenil which really is the first line of defence against lupus. Hopefully it will bring great benefits. It usually reaches its full potential in about three to six months, sometimes even longer. One important thing to remember is that the disease has its highs and lows and if you are feeling bad again, you shouldn't ignore it and get back to your rheumy and "complain" loudly as there are lots of different treatment options out there and it can take time to find what suits the best.

Some people with SLE don't have positive ANA, about 5%. I'm one of those but my diagnosis was confirmed by a skin biopsy. It is also quite usual for painful SLE joints NOT to swell. My joints never swell but they certainly feel like they should :lol:

Sometimes you hear doctors using the term "mild" lupus. It's a term we all hate here as there is nothing mild about the symptoms and all they mean by that is 'no major organ involvement' (except the skin which is also an organ).

hope to hear more from you soon,
Katharine
 

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Hi Claire,

Welcome to the boards from another fellow Scot - there are a few of us here now.

Hugz,

Pam xxx
 

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Hi Claire,

Welcome to the Lupus Site. In some cases it takes awhile for the ana to be positive. Not all Lupus patients lose their hair or have organ involvment. Unfortunately some doctors have strange "rules" about what Lupus should look like.

Are you staying out of the sun?? The sun affects more than just our skin with Lupus. It can trigger the Lupus to be active in the joints, glands, organs, etc. It is really important for those that are super sensitive to the sun to avoid it as much as possible. I wear ankle length skirts and long sleeve tops when I am going to be out. I also wear hats. For the longest time I had no reaction on my skin from the sun but 2 days later I feel the flare start. For me when a flare starts I run fevers, have swollen glands, pain increases and the fatigue worsens. I also use high spf sun screen.

I hope the cpap machine helps with your sleep issues. Did the doctor prescribe anything for the pain?

Take care,
Karen
 

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Welcome!

I am just like Katharine (DX via skin biopsy), I have only had one positive ANA and that was long after I was DX. A good Dr is the best thing to find, and your seems like a keeper. At least you are being treated, and not having a DX is not such a bad thing for insurance and such.

Stay well and let us know how you get on.

Stephanie
 

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Hi Claire and welcome!

I am also one of those cases with lupus and a negative ANA. I was diagnosed by my symptoms and a skin biopsy. I do get painful joints which sometimes turn red but usually dont swell. Lupus is so different for everyone...we don't alays fit into a textbook definition. Keep a list of your past medical problems and symptoms, it often helps with diagnosis.

I hope the CPAP machine works well for you..looking homeless on the bus shelter is probably not a pretty sight :) lol

Hope you get some further answers soon..take care!
Sharon
 
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