MYSTERY and MISERY

[Lauralulu]

Hello, I'm new to this and just wanted to share my story to see if anyone suffers with any similar symptoms?

I'm currently waiting to see the rheumatologist for my first appointment which is next week. All my childhood I've always been my mother's 'sickly' child. I would always feel achey, 'fluey' or just soo tired. When I was about 7 or 8 I was anemic and was given medication for this to help. When I was a baby I had abnormalities with my platelets and white blood cells, however these got better on there own. I used to suffer with extreme headaches at age 13 and was under he hospital but it was all a 'mystery'. At age 19 I developed my first butterfly rash but was told this was just a reaction to something used on my face. I was also extremely fatigue and having to urinate loads! Was tested for diabetes however came back clear. At age 20 I have developed a number of physical symptoms alongside the tiredness and aches. Butterfly rashes, circular sores that turn to dry skin, have been diagnosed with raynauds with my attractive blue fingers!, nail splinters, ulcers, spots on head, numb toe, still weeing loads and have now developed these strange horizontal white line across each of my fingernails?!! I have had an ANA test which came back negative however my doctor is convinced it could possibly be lupus and has referred me now to a specialist for more prodding!

At this time of my life I just feel like someone who complains of a new symptom all the time and now avoid telling people as I feel annoying! Im seeing the specialist next week, however even going to them I feel as though I'm bringing a long too much! He will sure have a field day!

Sorry for the long, boring post but I'm just interested to see if anyone else is in the same boat or experiencing similar symptoms? Thank you

[Peggy76]

So sorry for all your suffering hope a recovery will be soon.

Good 😊 Peggy

[GERY]

HI. I AM SORRY YOU ARE SUFFERING AND YES I TOO HAVE HAD SOME OF YOUR PROBLEMS. FATIGUE, ITCHY SCALP & HAIR LOSS, RASHES & WANTING TO WEE ALL THE TIME. I TOO HAVE HAD THESE SINCE MY TWENTIES & ONLY DIAGNOSED IN FIFTIES AFTER A BIOPSY. WHEREAS YOU ARE COLD I HAVE HOT TURNS WITH SWEATING & I AM 74. THIS ALL SOUNDS LIKE YOU HAVE LUPUS. I SEND BY BEST WISHES TO YOU

[Bebe76]

Please don't feel as you are being annoying! Autoimmune diseases can be very difficult to diagnose, due to sometimes vague but multitude of symptoms that are seemingly unrelated. It is important to give your rheumatologist a complete history or symptoms at your first visit, even things that seem minor like your finger nails may provide some clues as to what is going on. It might be helpful to write this all down, since you have had a long history of symptoms, and give a copy to the rheumy so he can really listen to you rather than trying to frantically write everything down. Good luck!

[Fennella02]

Sometimes too much emphasis is placed on positive antibody tests. Often they turn positive eventually but it can take years whilst others (mine) never turn properly positive. It makes unraveling the mystery more challenging! Persevere, don't be fobbed off, keep a diary and photos. Please keep us posted x

[Nikki246]

At least your doctor is on your side. Mine was dreadful and when I went to him and said I thought I had lupus he treated me like a hypochondriac. He did A blood test which came back negative so as far as he was concerned it was all in my head. It was only when I moved that my new doctor was brilliant and listened. She booked me in to a rheumatologist (although he was useless) I was then able to be referred to Guy's hospital lupus unit.

Go along with as much history of your symptoms you can as they will ask when it all started. As others have said they don't just go by blood results. The more info you give them the quicker you can get on the right medication to help.

[Lauralulu in reply to Nikki246]

I'm glad you have finally found someone who will listen to you. I to struggled with doctors, I actually went up the hospital out of hours department the first time I had the butterfly rash and the doctor there mentioned lupus. this was the first time I had heard of it. When I went to my own gp and told them they didn't want to know and said it was more likely a reaction to something used on my face (by this time the rash had gone-typical!) I had numerous other symptoms over time and actually never went to the doctor as I felt like a hypochondriac and that I was looked at as a nuisance. It wasn't until recently it was really affecting my work that I went to the doctors and with all the physical symptoms to show that a new lady doctor saw me and she was so lovely and actually LISTENED! I now hope my rheumatologist is equally as nice. There are so many brilliant understanding, kind doctors out there but also intimidating ones too, that I can only think of the poor people that aren't nervous to go to the doctor due to feeling this way that things get missed out on. I also think more help should be done for those people that may be experiencing problems that 'arent actually there', because surely there's an underlying cause as to why people feel anxious and they deserve someone's time and understanding too!

I wish you the best with everything

[Paul_Howard Partner LUPUS UK]

Hi Lauralulu ,

Welcome to the site. I hope your appointment with the consultant goes well next week. Please let us know how you get on.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...