Lupus and flare up ...

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I have been unwell for the past 4 years with all sorts of bad health 😢 positive Lyme disease, skin cancer, ibs, bowel and bladder issues, optic neuritis and systemic lupus .. Do any of you suffer from flares 3 weeks out of 4 weeks??

I suffer before my period , whilst on my period and after my period to a few good okish days and bang I'm back in a flare! 

I'm awaiting blood results for q.fever, bartenolla, brucella and ebv as I have on and off Epstein Barr virus . Please help and how do u cope? I'm on no treatment at present till I see infectious blood specialist . My main pains r burning joints all over and severe costochondritis xxx

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  • Posted

    Hi Delphine,

    My lupus is discoid so I don't have as many flare-ups as yours. I do have Fibromyalgia, IBS, bladder issues and EBV. Unfortunately, when I have any flare-ups it's usually do to stress. I usually go to bed as soon as I get home from work and then rest on weekends to get my body ready for the next week. Hopefully you're getting lots of rest. Lyme disease mimics Fibro. What type of treatment are you receiving for that? EBV is definitely triggered by stress and fatigue. Hopefully the specialist will be able to determine exactly what is going on with you. Hope you feel better soon!

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    • Posted

      Hi Cheryl , 

      Thanks for replying smile if you look at Lyme it mimics every diseases in the book sad I believe my fibro is Lyme as nothing else .. So far I have tried every thing behind the counter abs I either feel suicidal on them or my body doesn't respond to others . I'm currently taking tramulief 200 mg which is another stronger form from tramadol and oralmorph but I can't see a change in my pains so I guess next will have to b morphine patches . They want me to go into dulloxetine but the side effects r huge and weight gain sad every time I go on those kind if depressant I pile on 3 stone and my moods become really bad. What r u on Hun? Hope you have a good day xx

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  • Posted

    Hi Delphine,

    Gosh you poor thing! You are on some heavy medication. I am on plaquenil. It is an anti-malaria medication but used in the treatment of arthritis and lupus. I also have to use protopica on my scalp to help with the inflammation. So far so good. I was on prednisone earlier but thankfully it was only for a short time at the very beginning. I gained about 20 pounds so I understand how you feel about the weight gain. I was quite depressed for months, especially with the hair loss, but lost the weight and feel a lot better. I am starting to develop headaches which might be from the plaquenil so will discuss this with my doctor on Friday. I may have to switch to something else. I am wondering if the plaquenil could work for you too. Also, what about see a holistic doctor. Sometimes they have some better suggestions and it's a more natural product.  Also I take glucosamine 3x a day. I started taking that for my sore knee and stiffness with my Fibro. You have to take it for at least a month before you see any improvement though. It might be worth a try too. Let me know how your medication is working and take care of yourself.

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    • Posted

      Hello Hun, I used to take planequil 400mg a day for about a year and it did work very well and my rib cage pain stopped but because I'm not positive for lupus but have all the symptoms they have stopped it since may this year and gosh the difference is unreal 😥 I'm awaiting a skin biopsy to b done to see if I carry the lupus genes , I'm seeing my rheumy in two weeks so will ask her to put me back on it as I also suffer from pleurisy and being on planequil I don't have it but saying this having Lyme disease can mimic lupus and it could b a co infections called babesios . Everything is such a mess and being like this for 4 years I'm waiting to see the infectious blood specialist . I can't work as I'm in so much pain and severe brain fog and ongoing health issues every where else . Life can b so cruel xx
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  • Posted

    Hi Delphine,

    OMG, it doesn't take 4 years to see if you have lupus. It's only a bloody blood test for ANA. I would ask my doctor to put you back on the plaquenil until they determine what you have. At least you will get some relief. Can you drink alcohol???(lol) I sometimes think the medical system is just one big merry-go-round. Your brain fog is due to all the pain messages that your brain has been receiving. I had that a few times with my fibro. You feel like a dunce sometimes I know. Also, what about medicinal marijuana? I would try anything if it gives me some relief. I don't know too much about lyme disease but I do know if it's left untreated, it can really affect your nervous system. Is there anyone specializing in lyme disease that you can see? I did have costonchondritis once and I know how painful it is. I can't remember what they gave me for this. Thank God I only had it once. Let me know what your rheumy says and keep me posted on anything else. Take care of yourself. Big Hugs to you!

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