Can anybody shed any light on this??

Sorry to see that no one has responded to your post. I am going through a similar thing to you and awaiting an appointment with the rheumatology department. I have had many symptoms butterfly rash, skin problems, mouth ulcers, very painful joints, temperature flare ups etc. Although I don't think I can help you at this stage perhaps you can help me. What happens when you have your rheumatology appointment and what kind of tests do they do.

I hope you are feeling a bit better now and coping better.

and a steroid injection. I have to tell you the Hydroxychloroquine

was brill - in the six weeks I have been taking this I have not had one mouth ulcer - before I had lots of them all the tim!!! I have been referred to the Physio Dept. and am awaiting an appointment. The other problem I have is sleep.....or the lack of it. I am bordering on insomnia and I occasionally ask my GP for sleeping pills. They don't like to give these, but since sleep is a major influence on your well being - it is important. Tiredness is a major problem for me but I am told that the Hydroxychloroquine

improves this but takes some 6/12 weeks to get into your system. Don't know whether you have this problem? Take heart, I hope your Rheumatologist is sympathetic, but you need to give him all the details don't think something might not be related. Good luck and keep your chin up - keep me posted!!

I was diagnosed with lupus last feb and vit D deficiency, I was put on hydroxychloroquine in May when my vit D levels were normal again after taking supplements.The rheumatologist says my lupus is mild, thankfully, my Dad has sclerederma, so obviously in my DNA, which sowed up in my blood test.My initial symptoms were all my limbs were so heavy, felt like concrete blocks, I was very fatigued, and constantly napping, my arms were so painful, I felt like chopping them off! All My joints ached painfully and I ached constantly right down to my fingertips. (No rashes or mouth ulcers).Since taking the hydroxychloroquine my symptoms have gone, although I still get a little heavy armed and ache all over and occasional joint pain and hot flushes! No not the menopause either! It is so nice to communicate with other sufferers, as I feel so alone at times. My consultant has now prescribed Naproxin anti inflamatory to take two weeks on and two weeks off, because of side effects (stomach bleeds).Only took them for two days and am feeling so much better already. I would be happy to hear from any other new sufferers, it seems that Lupus symptoms are different for each individual, and this is what is confusing. Kind regards. Teresa

Thank you for your comments. I also suffer with lack of sleep, I tend to get really exhausted and then sleep. My legs are extremely painful and I find it hard to find a comfortable position to sleep in as the pressure on my legs makes me constantly change position (and I have a memory foam mattress). I am still waiting for my rheumatology appointment and the sooner I get it the better, at least then I can get a diagnosis or rule it out. Can anyone tell me how long it was from the visit to the rheumatologist to diagnosis?

I am glad to hear that the medication you have been given is helping

It is nice speaking to someone who has recently been diagnosed and you have answered many of my questions which gives me some hope.

Yes painful just touching skin, pins & needles, even tight clothes is not good! I have also had chest pains which he attributed to pleurisy..... another little joy that you can get!! I treat my hair to good conditioners to try and restore a little moisture.

Keeping as well as you can helps. I don't drink, am not overweight, rest as much as I can....not easy when you have a life to get on with. Be kind to yourself and don't overdo things. Your body tends to tell you when it has had enough. I feel much more positive than I did previously, although I do wonder some days what happened to me to get all this. Nobody in my family has problems. My youngest son has Raynauds which can be part of auto immune and I am desperately hoping it doesn't progress.

I have felt like this ever since I had a double hip replacement in 2011, and thought it was attributed to this but the consultants all say my hips are fine!! It was one of the consultants that noticed the butterfly rash on my face. I have put on an excessive amount of weight since my total hip replacements as I cannot walk any distance or stand for long due to pain. I like a drink but am not excessive. I don't like clothes touching my skin, also get pins and needles and I have chest pains - feels like someone is crushing my chest and I get breathless - do you?. The last three toes on my right foot go dead (Raynauds) I read somewhere that lupus can be brought on by trauma (which could relate to my hip replacements), stress etc. I hope yours doesn't progress either.

You appear to have had a rough ride following an already difficult operation. The joint pain and pins and needles are definately part of Lupus. The chest pain and difficulty breathing could be caused by pleurisy which is also something that comes with the pleasant disease!! You must mention these when you have your appointment. I have had pleurisy for the last three months.Try not to wear tight clothes around your chest area as this makes it feel worse. I have also read articles on this condition and am not sure whether anybody knows what the triggers are as people are affected differently. I do hope when you get your appointment you get a diagnosis which means you can move forward and get some type of relief from your symptoms. In the meantime take as much care as you can. X

breathing, I met up with a friend the other evening who has been diagnosed with B12 defficiency and her

Problems were chest and breathing difficulties and joint pain and heavy lead like legs. This made me wonder whether my Vit B12 has been checked, so might be worth checking this out also when you have your consultation, could even be a combination of the two. It seems these Vitamin deficiencies cause very similarsymptoms. I have just finished my two week course of Naproxin, when i felt wonderful, full of energy and free from pain.Now all my body is aching again and the joint pain is coming back. Can't wait to start them. again. Wish you all the best with your diagnosis.

Thank you for that info. My chest pain is really weird as it is not all the time, I can go weeks and then have the pain really bad for a few days and then it disappears again! I will let you know what happens after my appointment. I am glad to hear you are getting on ok and feeling much better