Hi I'm new to this site, I have been diagnosed with lupus and I don't really have a lot of information about it. I believe I'm in the middle of a flare at the moment. I'm finding it very hard to keep going during the day due to fatigue, my muscles seem to be pulsating all over, I have blisters in my mouth, but what bothers me most is, I have a bruit in my neck which is a whooshing sound. I've been told that this is ok. Has anyone else got this problem, if so how do you deal with it

14 Replies

  • Hi Harold, sorry you are struggling but what is a bruit?

  • It's a term doctors use for this sound I'm hearing in my neck, they say it's harmless after doing a Doppler on it, but I find it seems to increase when I am sick. How long does a flare up last? I just find that my rhumy has not given me very much info, she just put me on plaquenal and said see you in six months

  • My understanding is that the average person might have between 3 -6 flares in a year. My experience is that I'm sure I've been in one for 18 months with flares of being worse still. But the point I'm getting to is that during the 'worse still' flare everything seems to be intensified so I'm sure that my heart is beating louder and harder and shaking my whole body when in fact it probably isn't. Depending on your symptoms, seeing the rheumy every 6 months is normal. My appointments were like that for several years, then they became monthly for 6 months and now they are 3 monthly. Everything adjusts depending on your needs in my experience.

  • Thank you for your reply, I suppose I just have to get used to it all, I am feeling a bit depressed with how little I can do every day

  • Go onto Lupus UK Website. They have a newly diagnosed pack they can send you. Also loads of free leaflets you can download. Did your Rheumatologist check your Vit D levels? If not ask for that next time. Can be very low in lupus patients and cause awful fatigue. Prescription Vit D can really help if you are deficient. Start of a long journey. Just take time to educate yourself from reputable sources.

  • Great advise Sarah! She advising you right Harold, I am currently taking vitamin D3, D2 is not the one you want to take. In addition to vitamin D3, you would want to take calcium and magnesium to allow absorption. I just learned from this site about a guy, whose name I forget, Kent something, but he advises to take coral calcium and I am looking into that still. Great advise you are getting out here though!

  • Make sure you can find a Lupus Savy GP who can back you up and explain things in between specialist visits.

    p.s. in my experience everybody has different patterns and lengths of flares. Don't give up hope of ending up with a mild version of lupus where you can live pretty normally between the odd flare.

  • Hi Harold123,

    Welcome to the community here on HealthUnlocked, i hope you find the forum helpful.

    Have you received one of our free information packs? Inside the pack are a few pieces of information on lupus and the symptoms along with the details of some useful websites and organisations. If you think this would be helpful to you, just send me a quick private message or an email and i will pop one in the post.

    Best wishes,



  • Hi Hayley, I'm new too first rheumy appt Friday. Scared stiff. Would you please let me have a newbies pack too.


    |Babs x

  • Hi Babs,

    Yes of course i can, i'd be happy to. Just send me either a private message or an email with your full name and address and i will post one out to you.

    Best wishes,



  • Hi Harold, I read your post and wanted to give you some supporting words. Though I do not have most of the symptoms you are experiencing, but I do have the fatigue during the day mostly, but sometimes at night also. My joints really ache during flare ups too. You have good days and then there are the bad days. My entire life has changed, mostly because I can't enjoy the sun as I use to. I love to walk and garden, but any short periods in the sun can cause me to feel fatigue and nauseated. I did some Googling to know more about lupus, there are many helpful sites.

    I wanted to tell you that even though it hurts, exercise is advisable, later than sooner you will begin to notice the difference. If you don't push past the pain and fatigue and get some regular exercise then you are risking getting worse and gaining weight. When you are tired, you must nap. I know if you are not use to this then it becomes a problem, but I have learned the hard way that the rest your body needs is a part of the healing process. I don't know what medicines you are on, but I am taking currently: Methotrexate (can't believe I know how to spell it!), prednisone, and folic-acid. The prednisone, which of course is a steroid is really punching me out, but each Monday that I have to take Methotrexate I also feel fatigue and nauseous, but all these things pass after a while and there are times when I feel great! As a matter of fact, I feel really good right now save for fatigue and tiredness. If you are on steroids then you are going to go through something, though everyone is different. I would suggest cutting out sugar, if you are like me this one will be a challenge, I love to bake and eat my sweets! But, if you are using methotrexate it can be hard on the liver, so pushing water, and cutting out sugar will help maintain liver health while you continue with the med's you need. Another trick I learned is adding two cap full apple cider vinegar to my water daily. Not the apple cider vinegar that comes in a plastic bottle, the chemicals they use on the plastic container can get into your drink. But the glass bottles and preferably Braggs brand.

    I can't advise you about your symptoms, other then to say I have done some research and what you are describing does sound like conditions and symptoms that come with being diagnosed with lupus, but you should always ask your doctor about these things. I can absolutely show you some love and support though, hang in there, it should get better! Just don't give yourself a pity party, nor hang with those who want to throw you one! Speak health into your life even while it is hurting, especially while it is hurting, mind over matter. Talk to you later and I hope this helps some.

  • Hi Helen, thank you for all the good advice, I like what you are saying, I don't want to go down the road of feeling sorry for myself. I just find it very hard to talk to anyone about lupus, my family seem to think it's a bit of a makey up thing, so your words have given me a bit of encouragement. I will try and keep up the exercise, and stay positive

  • I understand what you mean Harold. In the beginning my daughter acted as if it was all in my mind and the ER doctor backed her up when he said I had anxiety. I was like, to myself, man if I didn't have anxieties to the point where it affected me physically in 2009 then I should never have to see an ER physician for anxieties! (persona joke).

    Usually, people tell you anything simply because they feel at a loss of what to do, when we just want to be heard. But, you definitely don't have to make up symptoms of lupus, most healthy people don't want to be sick. I would have personally loved my symptoms to be anxieties that would have been easy to fix for me. Lupus, I am relying on God for a fixer. What man can't do he can. Take care and be healthy!

  • Hello, I'm so sorry to learn that your family are not too supportive. I wonder if they are really, but are afraid for you. Try to gently encourage them to understand that because you may look well, that isn't necessarily the true picture. Have lots of Lupus UK leaflets lying around for them to read. If it's any consolation, I have had SLE since around 1969 (diagnosed in 1979) and I'm still here, have experienced ups and downs but come through it. Hopefully with the right treatment and understanding from your GP, specialist and family, you will too. Good luck!

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