Hello: Hi there my name is Marie, I'm sixty years... - LUPUS UK

LUPUS UK

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meecee1 profile image
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Hi there my name is Marie, I'm sixty years young and live in Glasgow. I have had fibromyalgia for over 10 years, recently I have developed other symptoms which the GP believes is Lupus. I have read up on lupus and would agree with her. I am waiting for an appointment with rheumatology, due to the cut back on appointments I have no idea when this will be. For a few years, every summer the skin on my right leg has become really sore and itchy, my manager at work noticed this only happened in the summertime. I didn't place any importance on it at all. Now though, I think it must be a sensitivity to the sun. The symptoms of fibro and lupus overlap a lot so I am glad I found this site. There is nothing better than being able to share the ups and downs with people who have the same condition. I am on a couple of fibromyalgia FB pages and find them really helpful even if it's only to have a wee moan! Thanks for allowing me to join, I'm sure I'll have lots of questions over time.

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meecee1
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Happykins profile image
Happykins

Hi Marie ,

Nice to hear from you - although sorry that you find yourself here.

I'm 58, from Wales and have uctd rather than lupus.

Everyone is great here and will be able to offer you good advice and a sympathetic ear/shoulder to cry on.

I know it's difficult at the moment but hope you don't have to wait too long to get a rheumatology appointment.

Be sure to keep a record of symptoms, with dates etc that you can write in bullet form, to take with you when you eventually see someone.

Also photos of any rashes, swelling, unexplained bruising etc.

Take care,

Jilly xx

meecee1 profile image
meecee1 in reply to Happykins

Hi, thanks for the advice. I will def take photos with me when I have my appointment.

Spanielmadlady profile image
Spanielmadlady

Hi Marie....I'm new here too.im sure we will get plenty of advice and support to help us through the rough times that undoubtedly come the way of autoimmune sufferers xx

meecee1 profile image
meecee1 in reply to Spanielmadlady

Hi there, I'm sure we will. I only heard of lupus when my friends daughter had gone on holiday and took very ill on the first day and had to be airlifted to Istanbul for ICU care. She was then brought home, again by air ambulance to Scotland. On three occasions her parents were told she wouldn't make it through the night. Happily she has made afull recovery with no further flares at all. She had taken out cheap holiday medical insurance, as she had never been ill before. The cost of her treatment would have been sky high. Hers was an extreme case, and my introduction to lupus! I have fibromyalgia, chronic kidney disease, high blood pressure, an underactive thyroid and scoliosis at the top of my spine, enough to be going on with! I'm going through the site for tips on dealing with flares and anything else to do with lupus xx

Spotty-ewe profile image
Spotty-ewe

Hi Marie, you’ve come to the right place for advice, support and a bit of fun thrown in. 😆 I only joined last year but have made some friends on here with whom I can exchange experiences, tips and support. I live in Dumfries and celebrate my 65th next month - very low key no doubt. I have SLE diagnosed 8 years ago but it seems likely I’ve had it from teenage years if not before. This has been the very best support I’ve ever had with all my ailments and I’m sure you’ll find the same.

So a big warm welcome and I look forward to hearing more from you.

Take care. 🤗 Spotty

meecee1 profile image
meecee1 in reply to Spotty-ewe

Thank you Spotty , it's fine being able to read up on a condition, however, nothing beats the personal touch. Like everything else there is probably no two people who have all the same symptoms but knowing they have the same condition and you can read their story all helps. As they say, sharing is caring, the current virus has knocked most hospital appointmants on the head. I'm sure there will be advice and tips on here to use in the meantime. Just finding this site has been a bonus. Marie

Spotty-ewe profile image
Spotty-ewe in reply to meecee1

It is true that no 2 people have exactly the same symptoms but whatever symptoms we do have there is always somebody on here who has it even if not the rest, and from that point of view it is comforting to know we are not alone, and that there is always somebody else worse off than ourselves. That really has helped me immensely.

Just ask if you have any queries whether to do with symptoms or medications, and there will be somebody here who can empathise and offer support and/or advice.

Welcome on board! 🤗

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