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Introducing Myself to other Lupus Members

Hi, I thought it a good idea to say hello to other Members of Lupus U.K. Lupus has been with me since 1973 but diagonosed only in 1983. I was diagnosed as having SLE. I am 73 years old and now reside in North Yorkshire; I was born in Hertfordshire. I lived outside of the UK. for many years returning in 1983. I worked from 1984 to 2015 when I retired in October. My Lupus first appeared in 1973 when I developed a very swollen thumb joint which I could barely move. I thought I had knocked the joint when cleaning windows but the swelling reduced along with the pain after a week approximately. A few weeks later my shoulder became extremely painful and I could not move the arm. I wasn't sleeping with the pain and I sought the GP's advice. and was prescribed medication. To cut along story short I was submitted to hospital with very swollen painful legs and Lupus gradually took over my body. With determination and a marvellous specialist nurse and special treatment I eventually gained use of my limbs. Whilst in hospital I experienced bleeding of the stomach and kidneys owing to some of the drugs I was taking, I had surgical hand splints which helped enormously to straighten the fingers and support them as well as the wrists. I thought at times I was losing my mind as I was forgetful and disorganised, which was totally opposite to my 'normal' self. To name a few issues, I experienced very bad headaches, loss of memory, extreme fatigue, loss of hair and self confidence. I wore the 'Butterfly' rash and had the rash on the back of my hands and my legs, I was not a pretty sight. I eventually recovered enough to be able to take up work and although at times I just wanted to stay in bed and tell people how I felt but the real world did not want to know. Once the rash disappeared and my hair grew back and I became fit enough for light work nobody understood how ill I felt at times and when I returned to work from sick leave colleagues remarked how well I looked, whereas in reality I felt so much pain and wanted to return home to go to bed. When I experienced flares people did not understand. I stopped joining in social activities because I was too tired and often in pain and eventually people stopped asking me. I expect my story sounds only too familiar but I honestly say since being officially diagnosed and having various treatments I am now on medication that helps me lead almost a normal life. Yes, I still have occasional flares, headaches, memory loss and my hair is ultra fine and lacks some of Its curls but managing my medication and myself I can say that I my I lead an almost normal life. I fought the 'wolf' with sheer determination and grit and I even joined the gymn again. Love and hugs to you all Dessi72. Xx

8 Replies

Hi dessi72

Welcome to the forum. It sounds like you have been through the mill, but I am glad to hear you have kept going and are ok, or as ok as you can be.

I have only been a member a little while but have found the forum very useful. I am undiagnosed at the moment, but I am on hydroxychlroquine and feeling good at the moment, except for a few niggle. I have only been ill for the last 5 years, I am 56.

Lovely to hear from you

Love Bev x


Hi Daisy1991

Thank you for welcoming me to the Forum, it was good to hear from you. I am pleased that you are finding the forum useful it helps a great deal to link with members who have a similar health condition as they can understand what you are going through, I have been on the medication you mentioned since 1983 and found that it has helped me tremendously. You mentioned that you ar undiagnosed at present, ar you waiting for test results? You also mentioned that you have been in for 5 years, is it the same illness and are you attending a Lupus Clinic yet? Sending hugs and love and hope the weather is not causing you too many problems with your health, Are you working? Take care. Chrissie x

1 like

Hi chrisse

You are welcome glad you have joined us.

I started with what was thought to be polymyralgia rhymatica by my GP in Oct 2011. He put me on steroids Jan 2012, which controlled the problem. He carried on treating me for a year and couldn't lower the steroids below 10mg because inflammation marker went high and sytomtoms came back, so he referred me to rhumy, I went in April 2013. Rhumy started taking me off steroids to do tests. He said sytomtoms were not consistent with PMR it took till July 2014 to get me off steroids and I felt dreadful when I wasn't on them. He did a pet scan the same month and it showed some PMR in my shoulder only and it also showed inflammation in some of my joints and tendons.

I have developed more symptoms, than what I had to start with and have shown a positive ANA now. The rhumy is now checking for other things after I showed him a photo of my face after being out in the sun, if you look at my posts you will see it. He put me on hydroxy, and said it this calms down symptoms we may be getting somewhere. He has never been convince that it is only pmr that is going on, so still investigating. He has told me that they have to wait for things to develop before they can diagnose, so still waiting. No I don't attend a lupus clinic, undiagnosed.

No the weather is not causing me any problems, the sun is my enemy, although I wish it would stop raining lol.

Yes I work but only part time, that's enough lol

Take care

Love Bev x

1 like

Hi Bev. I am wondering why. your RA Clinic hasn't yet referred you to the Lupus clinic, perhaps you may wish to ask for the referral as the Lupus Clinic may make further test to identify if a Lupus strain. Hope your health issue is diagnosed soon so that you can go forward with you life and also have further pain relief, Take care. Love Chrissie x


Hi Chrissie

Sorry for the late reply, not been on for a few days. My rhumy is still under the impression that it is some sort of undifferentiated arthropathy, he wrote to my GP saying he didn't think I fit the criteria for a connective tissue disease, he tell me one thing then, writes another offen. He may be right, but I am not so sure.

If this is the case I don't know why I could be sun sensitive. Before being on hydroxy, when I spent more time than normal in the sun, say on holiday or gardening, our garden is south facing. I would get more symptomatic than usual. i.e my joint pain, stiffness, muscle aching, hot flashes, accompanied by a feeling like my pulse was racing, a bit like a panic attack without really panicking and my temperature goes up to about 99 or just over.

Also may face gets like the picture on a previous post, really red. I also got really fatiqued and my legs don't work, as in, they feel really heavy and like jelly and walking any distance really wears me out. Any exertion also makes me breathless, that doesn't help the walking. I had these symptoms out of the sun, but the sun exposure made it worse.

Before being on hydroxy, I started wearing factor 50 by accident, that is before I knew it helped with sunsenstivety. After I started wearing it, my symptoms were not quite as bad as some previous holiday, but didn't put it down to wearing the sun cream, I just used to say to my husband, I don't feel quite as bad this holiday. I only found out from being on this forum about sunsenstivety, it explained alot.

Ar home the symptoms sometimes settle down but it is short lived.

My ESR and CRP have always been high since I got ill, accepted for one time after being on 15mg of steroids for about 4 months they were normal. When they tried lowering the steroids, they gradually went back up. Off meds they are always high, so I can't wait to see what the results of them are now, see rhumy January.

Since being on hydroxy, I have my symptoms, as described above are on the whole under control. But I am still having some nerve and memory issues.

I didn't know you could be referred to the lupus clinic, I thought that you had to be diagnosed with it before you could go, thank you for the info.

Love Bev x


Hi Bev, how are you? Have you been successful in seeing a Rheumatologist in relation to your symptoms? Would love you have an update from you. I have had some uncomfortable symptoms recently but having been on holiday for a rest and I am now feeling somewhat better in myself. My next Lupus Clinic is towards the end of this month and I am going to show them photos of the dreadful huge bruising that Have been occurring on my legs and arms, not a pretty sight. I believe it is just one those luppy things and I am not stressing about it. I will post the answer about the bruising on my page to people can read it. I look forward to hearing how you are. Sending gentle hugs Dessi34 x


Hi dessi72,

Sorry I haven't replied earlier, I have not been on the forum for months.

My rhumy did lots of test, lupus was negative, but he did find antibodies for a condition called primary biliary cholangitis, this is an autoimmune condition that can damage the liver. I was referred to gastroenterologist, he said that although I have the antibodies, I have not yet started with the condition. Phew glad about that, but he says he has got to keep an eye on me. He says some people have the antibodies and never get it. If it starts I will have to go on meds to reduce the damage to the liver. For most people it is slow progressing, but in some can lead to liver transplant.

My rhumy has still not given a diagnosis, he said that he thinks I could have seronegative secondary sjogrens syndrome, because apparently this is one of the autoimmune conditions that often occurs in people with primary biliary cholangitis. But I haven't got pbc, only the antibodies, so quite confused about the sjogrens??.

My rhumy says I have mild dry eyes and I have a dry mouth. I have had a dry mouth for years and always had trouble wearing contact lenses because my eyes used to dry when wearing them, but I didn't know until recently that it can be due to dry eyes.

I know the dry eyes and mouth has been going on since being of 2000, because that is when I started wearing lenses. My mouth has been also dry for at least 20 years. Sjogrens can also give you symptoms similar to lupus so I suppose it makes some sense.

Having said all that I am not showing the antibodies for sjogrens, so the rhumy says he prefers not to diagnose conditions without evidence of the antibodies, but he does agree I have many of the symptoms. He told me it can take years and years before the antibodies show and until they do he will leave me undiagnosed, but continues to treat me with hydroxy has he knows it is helping because my inflammation markers are now normal.

I am still having flares but they are short lived and less aggressive. When they come, I take arcoxia ( anti-inflammatory drug), this helps to calm the flares down.

So all in all I have doing quite well at the moment thank you. Hope you are too.

Take care

Bev xx

1 like

Hi Dessi72

Thank you for sharing your story with this wonderful supportive community.

Best wishes


Chair Lupus UK


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