Can anybody shed any light on this??

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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.

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  • Posted

    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.

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  • Posted

    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!!

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    • Posted

      Hi Jean, I was diagnosed with Lupus in May 2013. Mine is the mild type, discoid lupus, but still have some of the symptoms as everyone else ie painful joints, hair loss. As well, I have had fibromyalgia for 25 years so I have had to learn to adapt to this as well. The main reason for being tired and achy is that your body never goes into that stage 4 sleep where your muscles repair. When I am extremly tired, I take Zoplicone (5 mg) which helps. It has a bit of an after taste but for me it's worth it to get some rest. It doesn't make me drowzy the next day either. I also take Glucosamine 3x a day (500 mg). This helps with joint swelling and morning stiffness. You have to take it for a month before you see any improvement though. The one thing is try not to over due it otherwise it will knock you sideways for 2 days to recoup. Also, stress is one of the biggest factors exaberating it. Whenever I had a flare up, it hit my chest first, felt like I was having a heart attack. The worst part of fibro is the chronic fatigue that you suffer with it. You have to let things go. I do my housework at 5:00 am in the morning when I have the most energy. B12 shots also help to improve this. You learn these little tricks as you go along. The wet winter months can be the most painful as whether has a huge impact on you. Let me know how things go with you on this. Good luck.
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  • 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

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  • Posted

    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 smile

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  • Posted

    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!!!!
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  • Posted

    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.

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  • Posted

    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.

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  • Posted

    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.

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  • Posted

    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

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  • Posted

    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.
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  • Posted

    You too. Take good care of yourself. I will have my fingers crossed for you.X
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  • Posted

    Just to update everyone I have got my rheumatology appointment biggrin I go on 28 April so watch this space!
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  • Posted

    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.

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  • Posted

    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 biggrin

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