Hi All
I am new to this website.I have been unwell for some considerable time but only fully diagnosed with SLE a couple of months ago.I alreay have two other autoimmune problems (multi connective tissue disease). In addition to my existing tablets I have been given hydrocholiquine tablets. I understand there a long list of different symptoms and not everybody has the exact same list. For the very first time in a number of years I am not struggling with mouth and nasal ulcers. The one thing I am struggling with is constant temperature flares. Very embarrassing at times as I have to dress in layers so that I can frantically remove them to try and cool off!!!! My colleagues at work think I am in the throes of menopause - but I am way passed that!!! The nights are at night time. Sleep is the most diffiult to achieve at the best of times but this is making it worse. If anybody can throw any light on this I would be most grateful.
Hi Jean,
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.
Hi Sue, Thank you for your reply. I was extremely heartened by the visit to the Rheumatologist. He has now diagnosed Mixed Connective Tissue Disease with Fibromyalgia, which basiclaly means I have 4 auto immune diseases, one of which is Lupus, plus awful painful joints. He took a full history. Do not miss anything out!! I had bloods taken, urine test and he physically examined my joints. I have very little swellng of the joints, but they are painful nevertheless and he attributes this to the fibromyalgia. I like you had mouth ulcers and nasal blisters plus temperature flares. He prescribed me with Hydroxychloroquine
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!!
Hi all
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
Hi ladies,
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 
I got my diagnosis at my first appointment with the Rheumatologist. That is why it is vitally important that you remember all your symptoms. I struggle to remember stuff sometimes so I write things down so I don't forget. He kindly prompted me by asking me questions like ....does your hair fall out? No it doesn't but my hair is very dry and thin, my skin is also very dry. It is just remembering things to let him know. The more he knows about you the better is allows him to make a judgement.. I also know my heat flares are not menopausal as I am way past that. Some days I get maybe 6 other times I can that many I stop counting, they wake me up the night! I dont have the skin rash, which I understand is a big indicator so you may well get your diagnosis quicker. I am a little complicated!!!!
Its good to hear that you got an immediate diagnosis, I hope I do. I have noticed that I am loosing more hair than usual when washing/brushing which I knew was another symptom. Another of my symptoms is very sensitive legs, painful to touch can't put any weight on them, have you had this at all?
It is nice speaking to someone who has recently been diagnosed and you have answered many of my questions which gives me some hope.
Hi Sue
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.
Hi Jean,
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.
Hi Sue
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
Thanks Jean you have been very helpful. I will keep you up to date on what happens. I will be going back to see my GP on 4 March and will be chasing the rheumatology appointment with her. In the meantime look after yourself and I hope your medication improves things.
You too. Take good care of yourself. I will have my fingers crossed for you.X
Just to update everyone I have got my rheumatology appointment 
I go on 28 April so watch this space!
Hi Sue, Good luck with your appointment on the 28th April. I note that you have chest pain and difficulty
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 similar symptoms. 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.
Hi Teresa,
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
Hi Sue/Theresa
Good news Sue that you have got your appointment through. Just to let you know that my Physio referred me to a scheme whereby I can get an assessment done and a plan to help me with exercise to get my joints and muscles back!!!! Can't wait - really pleased - just the thought of not feeling 90+ is brilliant!! Is this something that would be good for you???
Hi Theresa
I have pernicious anaemia also and inject myself every 8 weeks. The chest pains I get are also not constant and are pleurisy which is one of the related problems with Lupus. I have mixed connective tissue disease and symptoms overlap with one another and it is very difficlt to diagnose. Keep a list of your symptoms so you don't forget to mention them when you next see your gp/consultant. My Physio told me that pins and needles and painful legs are also B12 related, so you may want to mention it.
I find perseverance is the key!!! Good luck.
Hi jean &Sue
Thank you for all your support. It is so nice to chat to others in a similar situation. I am suffering quite bad with aches and pains at he moment as the naproxen has been stopped for two weeks, it is getting worse as the days go by. Have you been on anti inflammatory tablets? I sympathise entirely, I too feel like 90, but felt great on the anti inflammatorys! Cannot exercise at all, and feel so unhealthy, so any exercise programme would be of benefit. Let me know how it goes Jean. I will ask my Consultant if There are any schemes for a personal exercise plan when I see him in April.
Your right perseverance is the key and being positive and keeping your sense of humour.
HI Both
Do you have Firbromyalgia?? I have this and although I have little or no swelling on my joints they are very painful as are calves, shoulders, elbows, ankles, hips etc. This is connected to auto immune - so I am told. Maybe this is something that you could ask. My Rheumatologist was very good he gave me booklets and suggested I look on the internet for information about this. My Physio also told me about pain receptors. I have learned more in the last two months than I did in the last five years!!!
It is a learning curve, but the symptoms are so similar for auto immune diseases, that at times I wonder. Having an M R I scan next week, this will finally put my mind at rest re MS which is neurological, and has constantly worried me, when I began having health problems at the beginning. The consultant hasn't mentioned fibromyalgia. I have found a lot of info on the Internet which has been helpful.
I will Keep you informed.
Hi everyone,
Just to update you all, I had my appointment with the rheumatologist. It was a complete waste of time, he read my notes then stated that I should not have been referred to him as I suffer with osteo arthritis and the rash on my face (which was not present when I visited the rheumatologist) was a false diagnosis by the spinal consultant. At that point I was practically dismissed without any tests being done. What a waste of everyone's time.
I wish everyone best wishes with their illness and hope you all get some relief in the future.